autism and how it affects my family

Christmas with autism

2010-12-30T09:43:00.002-06:00

Was entertaining.
Gabe was the first to open anything. It was an action link set for toy story. Goes with the sets he already has, you attach them and they do a domino effect. He loves them, cause they do things and even better are toy story.
He opens it, smiles and runs to the playroom. I could see him from the sofa the whole time as he shreds the box and sets up the toy with the others that match it. He is in there for about 20 min.
Suddenly Gabe rejoins us in the living room, dives UNDER the tree and digs out another box that is the same shape and size of the first. Smiles again, not looking at anyone, rips it open and takes off to the play room again. We didn't see him for almost an hour this time!
Deze just wanted to tear it all open, no matter the name on the gift, and she didn't slow down to see what anything was unless we made her. We make them all open things one at a time to help relieve the stress of it. And we also take breaks while opening gifts for cleaning up so the clutter is not over whelming.
Deze stripped off her clothes several times during gift opening. She pulled down the tree at one point, was eating gift wrap at another.
But when she opened up her new bath toys...she stripped and went for the tub! Not a word from her, I caught up with her as she was turning on the straight hot water. For a fat lady I can haul ass when one of my kids needs me to!
We tried hard to make it as stress free as we could. Still ended up with more meltdowns then I ever want to admit, but such is life in a house with 2 kids with autism!

People suck

2010-12-24T01:00:00.002-06:00

No, not all people, but some. Lots of people express that they feel that Gabe and Deze are VERY high functioning. I really wish those people could experience my life for one day. Just one is all it would take to make it crystal clear that both these kids have autism. There has been question brought up lately as to weather Deze has autism or just ADHD. I am sick of being judged.
If you for one minute think that she is "simply" ADHD explain to me this. Explain the EXTREME need for sensory input. She bites herself daily, spins for HOURS on the swing, runs into walls over and over for the fell of it, does NOT chew on food so she chokes daily, stays up most the night and gets up in the middle of the night, is very far from potty trained or even starting to train, is hard to understand, does not have ANY concern for strangers, can literally break her own bones and not cry a tear. Eats things that are not food, including poop and toys....breaks toys, glass and drawing things (markers and crayons) just from pushing too hard for sensory input.
She runs infront of moving cars, would go home with anyone...and I have a very strong fear of someone taking advantage of her as she gets older.If she goes to a doctor she does not know, she bites them, or drops to the ground and hides under the chair. She has taken off from us in many stores. She has ran outside and stripped naked in the yard. She paints herself in mud or anything slimy every time she is allowed.
I often say that she would be awesome birth control to a teen. She does have autism, but we love her just the way she is....
To those out there doubting that she has ASD please understand that she copies people. If there are adults here to copy, she will do so and can appear normal for short periods of time.

Today Deze broke........

2010-12-05T20:15:00.002-06:00

Two ornaments, one book, one Santa candle and one coffee cup! Its been an interesting day here. Deze has been entertained by my vacuum alot....She also stripped herself naked and was dancing around the house. When I told her to put something on, she put on....SOCKS! And then started to slid on the kitchen floor....I guess I should learn to be specific, you would think I would know this by now!

On a side note, we had a baby mole in the basement last night. Jackson was thrilled! He chased it down...and now we have to find it before it smells!

Gabe has been hard core focused on buzz and woody lately, like more then normal. He digs them out and carries them around for HOURS.
Tajia is going to be 7 yrs old on Tuesday! Time sure flies! Nomuken brings the snack for her class tomorrow...she has talked about this all weekend...

its been a whlie

2010-12-04T15:56:00.002-06:00

So I guess its about time to let the world know we are still alive.That is assuming that someone out there still reads this. If not at least I can get my thoughts down.

First off our family has very much been put to the test of strength lately. One of those sink or swim type things. I am not going to air it all out on here....but to make a VERY long story short, Geromy has quit working for now to get things together and hopefully attend college. I went through surgery 2 weeks ago for my gall bladder. It was really bad, had gan green in it, ended up in the hospital overnight. Just now getting back to "normal" from that.

Deze is finally in a class at school that the teachers are willing to admit that she has "issues". They try to keep her going there with sensory things, although she has been biting the other kids lately. Good news is that her teacher knows its not a "normal 5yr old" thing to bite! She is VERY far from being potty trained. As in we can get her to pee in the potty about 3 times a week at this point.
On a good note, she is picking up on words, I just started to notice this about a week back. She is learning to read! Forget math, colors and shapes...she is going to read!

Gabe is sporting a red mowhawk. He loves it! And he allows me to cut his hair without sitting on him, literally! He is doing wonderful in math. Just last week he broke the SCHOOL RECORD!! He did 40 2 digits on tops, 2 on bottom, both adding and subtracting math problems in 1 minute 34 seconds! And he got them all right! I am so proud of him!
He is writing and spelling his name without help. Past that he is not a speller...and thats ok.

Tajia is reading at a 3rd grade level, in 1st grade. She is ahead of the class in nearly all subjects! Her 7th birthday is Tuesday....she is learning to communicate with Deze much better.In some ways I feel like she had to grow up way to fast, due to autism in the family, yet at the same time I know that she is still allowed to be a kid.

Nomuken is 6 now. She got her ears pierced for her bday! She is starting to listen better. We had to step up on time outs with her. And she has come along way in the last 2 weeks. She is actually starting to be less shy at school. She talks there now...although she still will not speak in front of the class, and she may never, but its not really something I am worried about!

We have a new dog named Scholar. He is a shar-pei. He is lots of fun, really smart too. He is lose all the time at 4 months old, fully potty trained for about a month now. He loves the kids!
Sadly our other dog, Tank was put down on August 1st. He had something called rage syndrome, he started to bite random people. Including the kids.

Christmas is 3 weeks away, we have lots of snow. Deze went sledding for the 1st time yesterday. She lasted longer then any of the other kids...the farther she got tossed off the sled the harder she laughed!
Signing off for now, pics to come in a while...I will try to keep this up to date more! Thank you for reading!

Summer time!

2010-07-05T11:37:00.002-05:00

Summer time is here full force! Its nice and hot out and the kids are having fun in the pool almost daily. I would love to be able to take them to the lake, but with Deze who drinks the water, its not going to happen.
Between the school and some other people (not doctors) telling me that they think that Deze is normal, I was starting to doubt my own instincts for a while. I was starting to think that maybe I was just a bad mom, and didn't deal with her in the way I should....
Then it hit me. EVERY doctor, shrink and professional that has ever seen her sees that something is off within the first 3 min. The last one literally asked me "how the hell does the school NOT see this!" In the first 2 min of her seeing Deze. She works with GIRLS with autism.

On the outside she does appear normal. And she even mimics things enough she can fit in for a while. Till she starts to chew on her hands, or pull out her hair...or bit someone, scream and fall to the ground while scratching her face and head butting the floor. NOT normal things for a child that is 4yr 9 months old.

Dezire HAS autism. Dezire is NOT a normal kid. She is a hell of a lot of work. She needs to be watched around the clock. She sleeps 2-3 hours a night, and its not in a row. She bites herself, and other self harming things. She runs from me not knowing there is danger. She is a handful, but she is MINE, and I love her. I don't care what on lookers think. If they think that she is a "very mild" case, they can kiss it. Please people stop judging till you walk a mile....don't come into MY home and see her for 30 min and ASSume that you know what is going on. If you want to be a judge, where a black robe and a hammer thingie, then leave me alone!

In need of advice!

2010-06-30T12:52:00.003-05:00

So last night we went to subway to eat. Deze, who is now 4yrs and 8 months old, choked on a salad, and threw up. This is very normal for her, she does not chew well at all....I have NO idea how to help her more. I remind her over and over to chew, I chop things up...and she still chokes, 4-5 times a week at least.
Anyone out there with any ideas?

Dezire ran away!

2010-06-12T13:45:00.002-05:00

Let me first set the scene. Geromy was at work for the day, I had plans with a friend for the afternoon and the kids alone, I NEEDED a shower....We are talking day 3 of no shower!
So I turn on toy story 2, the kids all get glued to it....I sneak up and get a change of clothes and such for a shower...a VERY fast one. I turn on the water....and peak on the kids again, they are all fine. As I step into the shower I hear it, the front door unlock......fear goes thru me as I jump out and grab the robe.
I run to the living room and Deze is NO where to be seen. I go to the door and there she is taking off across the yard at full speed toward the busy road, already out of our fenced yard.
I took off after her and caught her less then 10 feet from the busy road. I get her back to the house, while she is screaming and biting me, and of course everyone within distance of hearing her scream is watching me.....
I ask her what she is doing....to which she smiles and says "NEED a slushie from target"
So I ask her, "were you going to target? and if you got there how would you pay?"
She replies "daddy work target, give Ray Ray money"

So she had this all figured out, except for the obvious safety of a 4.5 yr old child walking 2 miles alone in the rain for a slushie! I love her!!
Our friend then came over and sat with her while I got in my shower.....From now on I guess its night showers while Geromy is here or before 5am when Geromy leaves for work.....

about time to update again!

2010-06-04T20:09:00.002-05:00

We have been very busy lately so I have not been able to write on here. Deze goes to the university of MN autism center at the end of July. We were on their waiting list for 8 months. So this is wonderful! Its a 3.5 hour drive each way, 4 appointments, 3 different days, and one is a week from the other 2 days......but all the same we are doing this!
Gabe has become obsessed with Toy Story...big time. He is always asking to go to the store for more toys...and can tell you when Toy Story 3 comes out. We will be seeing that on opening day!
He did super good in school....still not spelling things and does not know his letters, but he can do math like there is no tomorrow in sight!
Yesterday was his and Tajias last day of kindergarden. They are now 1st graders! Gabe cried when he told his para goodbye, so did I and so did she. She will not be at the same school next yr. We will miss her for sure, she was great with Gabe. I worry about a new para, but its just life.
Gaydin starts kindergarden next yr, I am not 100% sure she is ready socially, but time will tell. She can spell and add and write very well so that is a non issue. She just needs to learn to talk when strangers are there!

Deze has been approved for SSI!!! And is down as disabled thru the state now. We have a lawyer ready and willing to help make the school help her! She is still not potty trained or even close for that matter. She had an appt. a couple weeks back and I am noticing they make her nervous, she chews on her fingers till they bleed after appointments...She is still waking up at very odd hours and getting into things all the time, its like having a 15 month old all the time...

Tajia is well Tajia, she said she misses school cause she does not have her friends here. She is going to be the one that runs up my phone bill! She is in 3rd grade math already and is ahead of the class on other things too. But her downfall is that she is a perfectionist. Everything has to be just so. If she writes the letter just a little wrong she erases it and redoes it....over and over....
Summer is here, and we are out in the sun almost every day....the park, the beach, the pool and just going for walks and picnics. Hope everyone out there in internet land is doing good!

Chicken Pox?

2010-04-25T11:03:00.002-05:00

We gots them...The day after the last fever broke from the nasty sickness I notice Tajia has what appears to be pimples on her face. The next morning they are on her arms. I thought she had impentigo (spelling on that one?) again so I took her in. And we have a doctor confirmed case of the chicken pox! We have already had friends over to share them with lol!
We are happy to be getting them done with while they are sill young, and this morning Deze woke up with 3 on her face and some on her tummy too!
We are non vaxers so the kids getting them on their own is a very good thing.....we are excited about this!
So if you are in the northern MN area and your child needs the pox, we are willing to have a pox party, just speak up! Seriously :)

The sickness that knocked us out!

2010-04-25T10:58:00.002-05:00

We have all been sick for more then a week. Feeling better now, but it was bad. Endless days of high fevers, and barely moving. And if we did move we threw up. Shakes and chills, headaches, horrible, horrible headaches. But we all lived and made it through it. I am not sure how, at some point in time I had such a high fever that I was seeing things that were not there, that is when I called Geromy home from work to help with the kids....well that and the fact that I could not walk.
I am happy its done here, at least I pray its done here. I have been cleaning and sanitizing things like there is no tomorrow.

Time just keeps on going....

2010-04-02T20:57:00.002-05:00

I feel like the hours in the day are melting away. Like there are no longer 24 hours. I don't even know what day it is anymore sometimes, between kids, appointments, watching other peoples kids and therapies.
We have been trying to get to parks and walk every day that it has been nice so far. It is helping Deze some, but she is still my wild child. My child that takes out a jello cup and says "ray ray hungry" then instead of eating it she mashes it in her hands and paints herself in it. She will not let it touch her mouth. One of the few things that she will not eat!
She chowed down some sunscreen just this morning. And Wednesday night bathtime was hell. For me! She says to me "ray ray paint" and I turn from the dishes which is a straight shot into the bathtub where she is (I could see her and hear her the whole time) and there she sits, with a ball of her POOP playing in it. Painting and mashing it. Thank god she was in the shower so clean up was not the end of the world!
Tonight she painted herself in honey....which by the way, is hard to get out of hair. In case you were all wondering!
Gabe is loving being able to go to parks again. He loves the outside, so long as he does not have to get dirty. I have to bring extra clothes with everywhere for him cause one spot of mud and he has to have it off NOW! He has been sleeping better with the activity.
We all walked 4 miles the other day and Deze was STILL up half the night. 2 hours of parks last night and she was up till 2am again. I am thinking she does not wear out!
My one frustration right now is when people attempt to compare kids with autism. There is no comparison, not even to another kid with autism. They are all severe, just in different ways. People assume that since both of mine with autism talk that they are very high functioning. I had someone tell me that the reason Deze's teachers say she is normal is cause they are used to kids with severe autism.....nice theory. But that is about as far as that goes. They are comparing her to 3yr olds at 4.5 yrs of age....and they LIE about what she does and doesn't do while there. (I have stayed with her more then once!)
I actually almost had a breakdown after my kids were compared to other kids, and I was told mine were "very mild cases".....I started to think I am just a bad mom and my kids are normal.

selling everything I can right now.......

2010-03-20T21:13:00.003-05:00

In order to come up with the money to get a special tomato push chair for Deze...it is 474.oo shipped. Craigslist is my friend right now...
Here is hoping I can sell enough to get this for her. The state will not help at all and she is down to not being safe in a parking lot. I cannot go on walks with her at all this summer...I literally fear not being able to bring her home in one piece.....

She has WHAT in her EAR?

2010-03-13T10:18:00.003-06:00

So Deze has been screaming and holding her ear since Thursday night...Friday I took her into her normal doctor. She had taken a red color crayon and busted off the end of it and jammed in into her ear! Well no wonder it hurt. The doctor distracted her with candy and pulled it right out.
She has an ear infection now because of the liquid that was trapped in there behind it!
I would have paid good money to have one of the school professionals there that say she is normal. While on the exam table she is repeating over and over "RayRay like candy...RayRay like candy"
She didn't feel the pain or notice that there were 4 nurses in the room with her...We call her RayRay as a nickname..and she calls herself that too. Not I, or me....RayRay. Somehow they think that is normal at 4.5yrs old!

Special needs stroller needed

2010-03-10T14:52:00.002-06:00

So my child that is 4.5 yrs old (Dezire) has been turned down for a special needs stroller for a second time as of today. We have done the doctors script thing,and the doctor even CALLED the state medical office and told them that she needs this stroller or is going to injured if not killed by a car. They said NO! That she can walk and does not need a stroller.
She is 65lbs and cannot fit into a normal stroller any longer. She runs infront of cars and buses all the time, she has no fear of anything at all. She undoes the harnesses. I don't know what to do with her!
So I am asking on here, hoping someone somewhere can help us! I live in Minnesota and am on state medical. We are looking for a way to get her a 5point stroller that can hold her....like I said she is 65lbs. She is 44 inches tall. If there are grants out there that can help us or anything at this point in time I would love to know!

Curious George 2

2010-03-09T22:31:00.002-06:00

We bought this movie on release day....1 week ago. I have seen this movie NO less then 4 times a day every day since then! Gabe knows the movie word for word. He calls it "monkey elephant movie" I love it!
The kids are going crazy waiting on it to warm up! I don't blame them. They wanna go out and play!
All the kids have been sick for the last week, not your run of the mill cold sick. In and out of ER 5 times in 3 days with pneumonia, and varies horrible viral infections. They are getting better, but we are keeping them out of school for the week to allow their immune systems to build up.
Today we got the therapy swing put up! Gabe loves it.

Monday Deze goes in for hearing testing yet again...I am looking forward to this and not all at the same time. I am not really sure I wanna know anymore.
The one good thing that came from all the sickness is that we learned why Tajia has been having a hard time breathing in gym class. The xrays showed she has asthma as well....know that we know what it is we can start to treat it!

Valentines....

2010-02-09T20:50:00.002-06:00

Today while daddy is working we are filling out Valentines for the up coming class parties. Now 2 kids need 26 of them and 2 kids need 32 of them.....that is over 100. The kids have to fill them out. Well Nomuken did just fine it, little to no help. Same with Tajia. Deze on the other hand just scribbled randomly. I had to help her alot with hers. Gabe wants nothing to do with telling random classmates that he loves them. That is all he thinks you do on Valentines!!

On Thursday Gabe will be 7yrs old. 7....Where did the time go? It is hard to think of him as 7. Where as he looks 7 or even 8....he cannot write his own name. Or count to 10....and he only knows a few colors. When tested he comes out at a social level of an 18 month old and a verbal level of a 19 month old....but he understands things at the level of a 13 month old child.

It kills me to know he is growing up in body...but yet seems trapped at a younger age. He wants me to hold him all the time. He is 68lbs. There is only so long someone can hold him. I fear time as he gets bigger and stronger......So a birthday with him is bittersweet. It is wonderful to celebrate him....yet it reminds me of a nagging fear all in the same breath....

Deze is doing good. Going in to check hearing again soon....she is in the same social therapy as Gabe is now. So we drive 2 hours each way once a week for a 1 hour therapy session....and it is worth every penny in gas to have my kids feel like they have friends. They interact with the other ASD kids on their own levels and terms...and there are no people to judge us there. Its like a safe zone for the parents and the kids!

Gabe had his first 2 full days of school...He takes off on the playground when the bell rings to go in. It took 3 paras and the principal to catch him....both Monday and today. I am thinking its going to be a normal thing for him. He really hates that bell!

We are back online!

2010-02-06T18:20:00.002-06:00

Ok I have decided I don't care if nobody ever reads this...its still something worth keeping up with.
We are finally back online after months with no computer. The kids are doing good.

Gabe is in public schools....I am not really ok with this all the way, but I was not really given a chose in the matter. So I will deal with it the best way I can. He on the other hand is loving it. He has a wonderful para who helps him out alot. She is really good with him, and trys very hard to keep in the main class room most the time. He is not really picking up on anything yet.....even the teachers are worried about this. We just had the IEP meeting last Tuesday. They are going to remove him from the room for 2 hours a day to work one on one with him with letters.....He knows 4 of them right now. He will be 7 on Thursday, so we are planning out a big party for him!
Tajia is doing good in school...at home she thinks that she is 6 going on 16. She has alot of attitude! We are trying our best to nip that in the butt now. She is reading short books on her own already and being helpful on the days she wants to be!
Nomuken lost her first tooth a couple days back. She is doing good, but her teachers are worried about her. She does not talk at ALL at school. They are trying to figure out why. However at home we cannot get her to shut up for anything! She has always been our shy one, so I am not all the way in shock on this one.
Deze is well Deze. She is into everything she can get into. She is having lots of asthma issues....one trip to the ER this week already for not breathing well. May be in for another one tonight at this rate. The meds are not working like they should....it worries me. Anything that messes with my kids ability to breathe scares me.

Tomorrow is Geromy and I will have been married for 7yrs....where in the world did all that time go? Yet at the same time it seems like much longer then 7yrs.....
I hope that everyone out there in internet land is doing well....there will be updates almost daily from now on! I am so happy to have a working computer again.......

If you read this.....

2009-11-23T16:23:00.001-06:00

Let me know. Leave a comment. If people are still reading this I will continue to update it....if not then I will stop.

Hotel in Duluth

2009-11-03T22:55:00.008-06:00

These are the pictures from the hotel/waterpark. The kids also got to trick or treat at stations through out the hotel. They loved it! Keep in mind you can click on a picture to make it bigger....and ENJOY!

Marine Museum in Duluth

2009-11-03T22:13:00.007-06:00

The kids thought that this was the BEST part of the trip! And I have to admit I had fun too....and the best thing was it was all FREE! There were things indoors to look at, a light house and water to look at outside. It was cold and windy, but the kids didn't let that slow them down. I think this will be a place we go to often, from here on out.
They also got to see a barge up close. It was HUGE, they were shocked at the size of it.

Deze's 4th Bday!

2009-11-01T13:56:00.007-06:00

These are the pictures from the party! They are backwards....I forgot that they did that when uploading them. So its the end of the party to the start!

In Duluth now

2009-10-24T10:28:00.003-05:00

For the next hour or so. Deze had her hearing test yesterday. She is just below average in her left ear, but she cannot hear high pitches in that ear. Her right ear is non responsive.
There is alot of fluid in her ears, not ear infection type, just fluids. They are not draining like they should be. The next step may be ear tubes, but they want to find out if she can hear from her right ear at all. So we come back in 4 months for more testing.

We also talked about the possibility that maybe she has sensory integration disorder and adhd too. I am not sure how to take this. I have thought all along that those were issues. But as normal I was ignored, and now its brought up a yr later.

I want to go home. We had fun at the water park last night, but this morning has been hell. Geromy is in a bad mood and its all "my fault". It gets old after a while.....but that is a whole other issue at the moment. I just want to be able to process yesterdays blow without being yelled at.

Tajia met a girl at the water park that she became instant friends with. They played together for 4 hours in the water park. When it was time to head upstairs to go to bed, they both cried! It was cute, but I felt so bad taking her away from her new found friend. So I took a picture of the 2 of them so that Tajia can always remember her!
Gabe had to be carried from the water park last night, he lost it. He was not happy and didn't understand why we could not stay the night there. They leave the lights on in there overnight so that didn't help. Nomuken is silly....she had a blast last night too. She passed out within second of being tucked into bed! It was super cute.
Deze is well Deze. She has no idea of anything going on. I did watch her more last night and noticed that she turns her head to where her left ear is toward you when you speak to her. My next step is to learn sign language. Even if the tubes help her, she will not be hearing 100% ever.
I feel so bad for her. She has so many things "wrong" with her. I want to go inside her head for one day. I want to know how she thinks and processes things. I need to know how to take care of her and how to make her feel loved.

48 Hours..

2009-10-21T23:27:00.002-05:00

from now we will know if Deze can hear...and just how much. They may have to make her sleep to do the testing, and I am very nervous about that. She is just barely 4 yrs old had I need a second sheet of paper to list "health concerns" about her!
I almost feel numb. I hate the waiting, and she has no idea.

Tajia has a staph infection in her broken finger. The splint got wet and I was very sick and forgot to dry it....so she got a staph infection. She is on antibotics and a steriod cream.....It is looking better now. The ped was VERY close to just sending her over to the hospital to check in when she saw it! Her finger was BRIGHT red, hot and swollen badly.

Gaydin is reading! She read a book to me today....granted it was easy things like "the towel has sand on it" but I don't care!! I am so proud of her, and she is proud of herself too.

We are getting snow now. It started as rain, then changed to snow. The dogs rolled in the mud...I had to wash them each 2 times to get the dirt of them! It was gross...

I am tired right now. We will be staying the night in Duluth...not by choice, but because IF they put deze under for the testing she has to be watched VERY close for 24 hours....and a 2 hour drive in the snow with no help near just in case does NOT seem like the best of ideas.

In pain

2009-10-18T02:11:00.002-05:00

So I have pictures to upload...just have to find the thing that hold the SD card and goes into the computer......

Today Deze was climbing on a tall stool we have. They are heavy and wooden. Well she started to jump on top of it. The stool started to fall. I caught Deze...NOT the stool. The stool landed on top of my right foot. The swelling started right away. I literally had a problem seeing for a minute due to the pain.
Once I could see again I made sure Deze was ok. And got ice on my foot. It has been 12 hours. Its still hurting bad. Even a blanket is too heavy to put on it.

On a side note I have decided that my house will NEVER again be clean to my OCD standards.....I get one room sorted and picked up and things where they belong only to find more dishes in the sink or clothes in the hamper. It never stops! Its just the way it is.......

The pain killers are kicking in...and Gabe is finally sleeping (at 2:30am) so I am going to try to get some sleep!

Sickness

2009-10-13T21:58:00.002-05:00

So we have been struck by the sick bug. For the last 2 weeks......I think it may be the piggy flu. Just a guess, they are not even testing for it anymore. We have been struggling to keep up with the house work and the kids while sick. Its no fun.

Deze was evaluated by school again. They stated that she is fine, no worries about her at all. I would think a kid diagnosed with autism would be reason to worry, but what do I know?! They claim she is normal at school. Yet when I was there for the day with her she was not. Its just that the teachers do not pay attention to her....and the fact that she is 4yrs old. Most the kids in the room are barely 3yrs old or still 2. So she fits right in with them.
It makes me sad having to fight for her like this, its like they don't care about her or they think we are making the autism up. This kid drinks albuterol.....at the age of 4...and super glue and paint....she bites her fingers till they bleed, and pulls her own hair out. She has to have a 8lb blanket on her to sleep....if it falls off, she wakes up! She chews on toys, books, puzzles and chalk.....anything not nailed down......she breaks things alot....she scratches herself till she bleeds cause she cannot feel how hard she is scratching. Normal? Give me a fucking break!

Tajia is loving school. She can read some of the Dr. Seuss books all the way through with a little bit of help! She has class picture day tomorrow...that should be fun. She can now spell her name verbally and on paper correctly. I am not sure how they are learning so fast, but its fun to see her learn new things!

Nomuken is having fun at school too. She finally started to talk in class as of last week. She is a turkey and was mute all of last yr for them....and this yr too till now. I am happy that she is starting to feel comfortable with them and is speaking! She talks nonstop at home, so we were not worried about it, just waiting for her to come around. She is learning to write things very well. Its cute to watch her absorb things.

Gabe is still homeschooling. He is doing wonderful with math..but not so much with the writing and knowing letters thing. We are having a really hard time getting that down with him, he does NOT know the letters in his own name. Its just a matter of time and work though...it will be done. On the other hand he is in 1st grade math....I am thinking he will be doing something with math as he gets older :)
We will love him all the same either way!

We have a PCA for the kids, but at the moment its almost more work then help. I am not sure what to do about that right now. Our medical is canceled so Gabe missed a counseling appointment today.....we have been without medical for a week now. Its frustrating.
I have been getting things on clearance as we go for the kids for xmas and bdays. They are coming up fast (Deze's was last week!) and we are going to be really bad off money wise soon.
Deze and Gabe are going to be seeing specialist in Duluth every week. Its going to be hard to afford, but its worth it to help them.......I will post pictures of Dezire's birthday party as soon as I can....

2009-10-08T17:17:00.038-05:00

These are random pictures from the last month. I have lots more pictures to add, but the computer is only loading the one at a time, so its taking a while. Will have pictures of the water park and 4 wheeler rides on here tomorrow....as well as a long update. Off to bed thought as I have to be up for the day in 5 hours!

Tajia's hair

2009-10-08T16:28:00.005-05:00

Tajia had her hair highlighted with purple for the start of kindergarden. She loves it as do the other kids in her room!

Exhausted

2009-09-26T03:29:00.002-05:00

I have pics to upload. I just need the energy to do it. It is 3:30am here. Deze is awake. She was sleeping, but she woke back up about an hour ago. She is bouncing off the walls. There is no way she is going to sleep anytime soon.
We have all been sick here. Some sort of respiratory thing. I have no idea what it is, but its not fun. Deze is having asthma issues as well. We are still fighting the school system to get her help. They have finally agreed to retest her. We did the written test already, anything above 74 is considered to be autistic. She scored 129, that should tell them something.
I will update tonight (Saturday) since Germ is off work I should have the time. Off to get Deze out of the bunny's food again!

Its been a long week

2009-09-15T17:52:00.002-05:00

We got back from the waterpark last night. It was a blast!!! I have a few pics to share in a while....have to get all the kids to bed first.

In the appointment at the speech place we learned alot of helpful things. We learned how to speak to Gabe and Deze to get things across better. They were stunned that both of them are not in speech. And even more shocked that the school is not helping Deze. It was also stated that they think that Deze may be "worse off" then we thought. The doctors suspect hear loss. She goes in Oct 23rd for hearing tests with a specialist that knows how to deal with ASD kids.
I am not sure how many more diagnosis I can deal with on her. She is going to be 4 in less then a month and has a list of things "wrong" with her longer then most adults do. I feel bad for her......
She will be starting school as of next week, headstart. They are not giving her any services. We have contacted PACER to help us with this. I am not going to let the school refuse to help her out.
Friday there is a conference in town to help other parents with autistic kids...its the doctors we saw yesterday that are doing it. My kids are the main subjects of the talk. They were taping them yesterday at the appointment. We are also getting a "sack swing" for the kids. It hangs from the ceiling and it like a cocoon for them to sit in. It was very calming for them to play in the one yesterday.

We have our finalization meeting for the PCA on Thursday...if I remember right. I will put it this way....Gabe has 5 apts in the next month, Deze has 4, and we have 1 with the pca thing and 2 with school...I have been mixing them up lately. It is hard to keep it all straight!

Tajia is loving school and doing better. Things are getting worked out. Gabe is homeschooling still and doing good. He does not sit there and listen, actually he sits and plays on the floor with legos while I read the story or whatever to him. Then he hops up, does what he HAS to do and is back to playing....shocked me as I didn't think he heard a thing I said!

We have 2 more kittens and a bunny. You will see pics of them at bedtime too.....

Gaydin and Tajia go to school in the morning, Deze to the doctor to fill out papers on allergies and asthma for school. It never ends....there is no such thing as sleep in this home.....its just coffee and breathing to remain calm!

And it continues!

2009-09-10T16:32:00.002-05:00

So I think today will be better. But NOPE. First off the lights were shut off cause we were a DAY late on paying them....got that taken care of.
And then I get Tajia from school. And in comes the wonderful email, from the teacher. She wants us to have a healthy snack for 30 kids tomorrow morning. Germ has the car. I don't have the money for healthy. So at 6am I get to go to the store to get a snack. And then I am going to be requesting a change of teachers.
It was not the snack request...its HOW she did it.

Today was Tajia's first full day of Kindergarden

2009-09-09T20:58:00.002-05:00

And it did NOT go so well.....well the major part of the day was ok. Drop off was GREAT! There was a little boy that she was crushing on last yr that is in her room this yr too. He got there on the bus and waited for her in the hall....he held her hand and helped her find a seat. It was so stinking cute!
Snack time however was not ok. Milk is free to all kids in MN. Its a state law in kindergarden. Well they have to raise their hand for a count of how many milks to get....well 2 boys didn't raise their hands. And when the milk got there one of them changed his mind. He got a milk. Tajia got shorted! And to add to that she was not allowed to get her water bottle from her lunch box.
She was VERY upset that she got animal crackers with nothing to drink. She followed the darn rules and got shafted!
I emailed the teacher...she replies telling me she is sorry, but that miscounts due to mind changing will happen.....OMG NOT ok! I am going to be talking to the Principal in the morning. There is a mini fridge in the room....there are 27 kids in the room. Get 27 milks and if a kid does not want one then put it in fridge...How hard is this?
And if you are going to screw over a 5yr old......don't do it to the ones that followed the rules and raised their hands!!!!!!!!!!!!!!!!!!!!

I think Deze was just seeing if they were doing their job still

2009-09-06T11:24:00.002-05:00

This morning we wake up to Deze with a kid vitamin bottle in her hand. Child proof bottle. It was on the top of the cabinets in the kitchen. I ask her how many she had of them...and she says "deze likey them lots"
So on the phone to poison control we go. And as a heads up if you are buying kids vitamins, get the super cheap store brand kind. Why? Cause they are generally iron free......good thing for no iron too or we would be in the ER room right now......

I have a secret

2009-09-04T09:47:00.003-05:00

In the middle of this month we have to go to Duluth for a big doctors apt for Gabe and Deze. Its at 8am on a Monday....The place had a 7 month waiting list. So this is a big thing. We were going to stay the night , but we told the kids that the only hotels that we can do are ones with no pools. The kids are not happy about this, but still happy there is not a 5am wake up call to make the drive...ok it would really be 4am....
So here is where the secret comes in....I made a reservation. It costs the same as any hotel. It has 2 queen beds and 2 SETS of bunk beds in the room....as well as a fridge and microwave and internet....all the goodies.
BUT the BIG BIG thing is.....

http://www.duluthwaterpark.com/

ITS A INDOOR WATERPARK!!!!!!!!!!!!!!!!!!!!

We are not telling the kids this! They have been one time 3 yrs ago and loved it so much. We are dragging the PCA with us for extra help there. I can hardly keep my mouth closed!!

Update on the appointment

2009-09-03T01:58:00.002-05:00

Just a fast update tonight as its 2am...
Nomuken's eyes will remain intact, untouched by laser or knife.
Her right eye showed a 2% improvement from the apt 1yr ago in Oct. She has a new script. And goes back in 3 months......
I am more then relieved on this one....

Nervous about what tomorrow will bring

2009-09-01T14:58:00.002-05:00

Tomorrow morning at 10:45 am Nomuken will have her eye apt. This is the big one....the one where we learn if she needs eye surgery. She has had glasses for a yr in oct. They would prefer to do the surgery before it gets too cold here. I am nervous about this, the idea of eye surgery scares me.
I will update after the apt...but if anyone reads this before the update, please say a prayer, keep us in your thoughts....or whatever it is you do...that she does NOT need this surgery.
If she does it would be the first of 3 or 4 depending on how bad it is.....
She has no idea..She will not be told till we know for sure. No reason to worry her too...

Good morning world!

2009-08-31T08:14:00.002-05:00

Its 8am......Deze passed out at 5am....was back up at 7:30am. Gabe and Geromy are still out cold. This is going to be a very long long day. We have Deze's teacher meeting today, so its not a good day for so little sleep.....

Its 3AM

2009-08-31T02:53:00.002-05:00

and I just got Gabe to sleep. Turned off the lights and locked up the house. Only to turn around to see Deze wide awake.....Everyone else is sleeping. I just started more coffee....its going to be a hell of a long day. I am up for the day.
This is not going to be fun. Geromy works today at 3pm so I refuse to wake him up. He needs the sleep. At least she is cute....its her survival tactic!

Counting down the days.

2009-08-30T20:59:00.002-05:00

Till the Tajia starts Kindergarden on sept 8th.....This Friday I am taking her to get her hair cut, new shoes and a new outfit...then out to lunch. A special day before she goes to big girl school. I have a new worry about her going to the class she will be in. One that sounds to most like I am a bad person.
A friend of ours is going to have their autistic child mainstreamed. The kid will be in Tajia's room. I fear this will affect her and the rest of the room. He is loud and stems alot (very much like Gabe does) he cannot sit in one place for any length of time. I worry about her and the other kids being able to hear the teacher and learn like they need to.
Now before I am judged I have to say, its a blessing and a curse having both neurologically typical and autistic kids. I tend to see things from both sides in a different light. We are homeschooling Gabe for many reasons. The main ones are for his safety, for the safety of the other kids, so he can learn at his pace on all subjects, and so the other kids can learn without him screaming and jumping around the room as a distraction.
So yes I get that it sounds bad, and I get that his mom wants him to have things as normal as possible......

Gabe has been chewing on his hands and other things alot lately. I think he has another loose tooth or one coming in....I am not going to check as he will bite if I get near his mouth!! We got in his homeschooling materials...and wow there are TONS of things. They supply so much. Everything from color workbooks to counting blocks for visual learning of math. Its so nice!

Nomuken goes to the eye doctor again this next week. Its the day we learn how bad her eyes are and if surgery is needed. I am nervous about this....
Deze's teacher is coming here tomorrow for the first home visit. She has NO idea that Deze is autistic. Should be lots of fun....We will know in the next week if they plan to put her in a special needs room.
We have located a PCA for Gabe and Deze. Its a friend of Germ's that is sick of working at target and wants the 3 dollar an hour raise! I cannot wait for the paper work to go through...I would love to be able to wash the laundry without Deze breaking something...again.
She broke the cookie jar yesterday.....Nomuken was very upset...it was in the shape of a monkey. Nomuken loves monkeys!
Its time for the normal bedtime fight with Deze now so I must run!

Summer is coming an end.

2009-08-26T12:35:00.002-05:00

Tajia starts Kindergarden in 13 days...on Sept 8th. She is starting to freak out about this, I am answering questions the best I can. Kinda hard since I have no clue about how it works here. She has the backpack and all the things she needs....except the haircut and the 3 pairs of shoes! Yes 3. One to wear to and from school, one for gym to stay at school, and one that is for inside school only and never to go outside! These were on the school supply list. Kinda over the top if you ask me!

Gabe's homeschooling things are coming via UPS and are due here tomorrow. He is going to be homeschooled with the MN virtual academy. They are even allowing his IEP to be used. We get daily meetings online with a special needs teacher and tutoring when needed. They supply it ALL down to the computer, lesson plan, books and worksheets....
I think he will learn better at his own pace.
Tajia will be in public school for this yr, next yr we pull her out and homeschool her as well. The deal is that when we pull that social out let we give her a new one. So she will be starting gymnastics.
Nomuken will be in headstart in the kindergarden prep class this yr.....Deze well we are not sure yet, they want to toss her into the normal 3yr old room. This is a new teacher that knows nothing about autism.....I want her in there and in the special needs room.
We will be fighting the school to the bitter end on this one.
Today I mailed out the application for Deze to get a service dog! It is up to a 2yr wait.....This would be wonderful for her.

Stressed

2009-08-24T23:01:00.002-05:00

Most parents love bedtime...that time when you tuck in the kids and read a book, do the simple cleaning then get alone time with your mate. I hate bedtime. Its nothing but stress. Its Deze running from room to room ripping things up. Its me in tears from chasing her and trying to remain calm with her for hours on end while trying to get her to sleep. Its her sucking her toes and biting her fingers till they bleed and laughing at me.
Its me knowing there are lots of dishes and laundry waiting for me to get done....and a trashed living room from her waiting as well....Its things I cannot do with her awake safely, its thinks that I alone do. Its making me feel like I am nothing, like I am a nobody who just lives to try to remain calm with a child that pushes every button she can, and once she does that she makes some up. I feel like I fail cause nearly every night she is still up at 11:30pm when germ gets home and he has to put her to bed.
During this time I do the dishes, laundry and general pickup of the house. Then Gabe goes to bed about 3-4am....and then the days starts all over. My worry is soon I have to do school as well. Tajia has to be there at 8am....means leaving here at 7:30am. I am not sure I can do this....hell I am not sure I can keep doing what I have to do now!
I know it will be ok...but I had this feeling.

The song

2009-08-24T15:55:00.002-05:00

That feels like it describes my life:

http://www.youtube.com/watch?v=CZXHYItXWqE

For Grandma!

2009-08-23T00:21:00.004-05:00

Today

2009-08-22T03:36:00.002-05:00

It is 3:40 in the morning...I am tired...its been a very, very long day.
I will simply put it this way. The top shelve at target that holds the paper towels can hold a child. A 68lb child, named Gabe. I was in target alone, with all 4 kids. Gabe bolted. I went after him. Was just about to have them lock the main doors when I see a pack of paper towels fall to the floor. I get there to see him laying down on the top shelf...then he starts screaming, very loudly. This gathers a wonderful crowd of people. Which means he is getting attention for what he is doing. So he gets louder.....this goes on for nearly 5 min.
I get him talked down...ok bribed down with an icee. I know this seems wrong, but I didn't know what else to do. All I wanted to do was melt into the floor of target.
The rest of the day goes on ok....we go to the park and walmart then home.
While at the park Deze was going onto the outside of the slide and leaning back. A friend caught her midair. She would have been hurt bad, it was a 9-10 foot fall.

So we get home, and I bathe all 4 kids. I get Tajia and Nomuken to bed and clean up the house, and then it starts. Gabe starts to scream, I can see him getting mad. I try to step in, I get bitten and kicked. I give him some space. He starts to pick up anything not glued or nailed down and throwing it. Pillows, tables, cups, toys, stuffed animals, chairs, cups, diapers, the bunny food. You name it.
It was a full melt down. Once it was over about an hour later I made him help with the clean up. I need him to know its not just about making the mess its about owning up to it. I get that this may not be the best way to deal with this, but I am unsure of what else to do.

The fair is in town here. I would love to be able to go, but we cannot. Its not the money its about safety. Deze undoes the buckles on the rides. One time is all it would take and it could kill her. I am not risking her for a few hours of fun. So we are going to the lake and doing a picnic.
I am down to getting about 3 hours tops of sleep lately. Its becoming the normal anymore. I try to make sure that Geromy gets the sleep he needs as he has to work. Me I drink coffee like water. It is my drug that keeps me going. I need it, and I am ok with that.

I could seriously puke from......

2009-08-19T09:54:00.002-05:00

lack of sleep... Went to bed at 5am, was jumped on to get up for the day by Deze at 7:40am. I am making another pot of coffee as I type. I just feel drained and hollow, yet so calm its not even funny!
Geromy is still sleeping...which is great, he has to work, he needs the sleep. Gabe is still out too...for the next few minutes I can already hear his stirring. My house is a wreck at the moment. The girls got into things before they woke me.
They are cleaning up as I type...just papers on the floor I could really care less about the toys.
I did however find a game on facebook to help me stay awake for the moment! Eventually I have to get up all the way and deal with life....but for the moment while Deze is ok with sitting next to me and coloring while watching spongebob....I am not moving more then I have too!

sometimes....

2009-08-18T15:34:00.001-05:00

about the time we are ready to toss in the towel, something works out. We now have a working computer!!!
So there will be updates very often and pictures as soon as I can locate the darn cord!

Still no computer

2009-08-15T22:31:00.002-05:00

The one I am using is borrowed for a while....as in him and Geromy are playing a video game for the moment! So I am taking the chance to update this....

Deze is approved for PCA help..we have our PCA person picked out just need to get all the paperwork in....the same day we had our interview I took the kids to the park and Deze walked off the side of the play platform. So much for going down the pole that was there! She Hyper extended her elbow...she is ok, one would never know she was hurt. She does not slow down at all...for anything.
We found out from school that they did nothing over the summer to get her in special ed. They put her back into a normal room. We are fighting this at the moment. I am sick of them thinking they don't have to help her. She needs all the help she can get.
She was only approved for 1 hour and 45 min a day of PCA help, which is not enough, but it will help.

Gabe is doing good...I got a bread maker from a yardsale for dirt cheap and found out that Gabe loves banana bread and cinnamon bread! He also learned a new wrestling move that he uses on daddy.....if you have seen Madagascar 2 you will know it (he is in love in with this movie and knows it word for word) He does something called..."Tune in tokyo" It invovles the pinching and twisting of a nipple....gotta love what movies teach! The good news is that he tells daddy what he is doing first. So daddy has learned to cover fast!!!!
Gabe will be homeschooling this yr....and most likely forever...he is terrified of school. I cannot even take him in to pick up another kid!!

Tajia starts in kindergarden Sept. 8th. She is excited to be in "big girl" school. She is learning to spell more things daily....so much for spelling out the word park and the kids being clueless!

Nomuken goes to the eye doctor in the beginning of Sept. We will know then if she is in need of surgery. If she is its a 3 days stay in Minneapolis for us. She has no idea and I refuse to tell her tell its confirmed. She is learning things daily...she is like a sponge!

Gabe and Deze are headed to a specialist next month...we were on a 7 month waiting list and the doctor reviewed our case and bumped us up to the front! Its at a place called the Scottish Rite Center. From what I know they help kids with Autism and speech issues to learn to talk...and express feelings...I am looking forward to this big time! Will mean going about an hour and a half each way to the specialist on a weekly basis....but I am willing to do whatever it takes.

As a family we are doing great... We will be without a computer for a while...as in until taxes come back assuming that there is enough after bills and medical things are paid to get one. The xbox 360 died too Gabe is upset about this cause he cannot play his CARS game or spiderman......It will be fixed some day.
Right now our worry is to get Nomuken a new carseat as she is outgrowing hers fast....she is only 36lbs even thought she is nearly 5yrs old...so we are getting a 5point harness for her. We are also saving up to be able to get her new glasses and for the trip in case of the surgery.

Update on life

2009-07-20T01:25:00.004-05:00

As you will see below I have updated on the pictures. They are of parks, petting zoos and the lake. Gabe, Deze and Nomuken all went tubing and in the boat. Tajia refused to go.
As you may have noticed Geromy is in very few of the pics. this is not because he is taking the pics....that would almost always be me. He has been working alot, so the park and lake time, its just me and the kids. Sometimes I meet a friend there.
We have gotten another new kitten, its name is Diego. I do not have a picture of him, as my memory card is full till today. Our computer is dead, so my updates will not be often. I am on a borrowed computer at the moment.

Gabe is having issues with anger. He is starting to throw things more and more. He tells me that he is mad that daddy is not here all the time, I wish that I had a fix for this one! Over all he is doing good, he is obsessed with numbers lately. He can tell add big numbers and subtract them, but he cannot count to 10 when items are placed in front of him and he is asked to count them individually.

Tajia is well Tajia! She is started kindergarden in a month, she is nervous about it. She is afraid of meeting new kids. But when we go to parks she has new friends within minutes of being there, so she will be fine.

Nomuken is doing really good. I am pretty sure she will be getting eye surgery in september as the minute her glasses are off her right eye wanders. I am nervous about this. She is getting brave about swimming and writing.

Deze is well wild....she has been pulling out her own hair more often, I have no idea what to do with her. She hurts herself alot. It hurts me to see her do it. I am looking for a PCA for her at the moment. The issue is trust.....I am not sure I can trust someone with her. She is alot to deal with.
We got back her official diagnosis forms finally (only took 4 months) and she is down as Pervasive Developmental Disorder/Autism: moderate to severe. As well as phonological disorder (its a speech disorder where they will always leave off the beginning and ends of words). She was dropped from OT cause they do not know what to do with her.
I am not sure what to do with her either, other then take her home and love her. I laugh at the messes...or I would loose it on her, and that is not ok. Gabe and her fight alot cause they both parrot words. They also parrot each other! Gets interesting to say the least....

I have a feeling we are going to need a lawyer when school starts for Deze. They are telling us over and over that she is normal.....and they are refusing to help her at all. They want her in a normal 4yr old room, with normal kids.....18 kids to 2 teachers. Its not going to go over well with me. School preaches about early intervention....yet we have 2 diagnosis on her and they refuse to help her at all.....
We are without a computer for a while. Our modem is not working. I will update from the wii and friends computers when I can. I miss being able to vent on here! Hopefully soon we will get it back up and going....Hope that everyone as a good summer...

Edited to add: I did get a comment a while back asking how we were ok with allowing Deze and Gabe to break things and make messes like wild kids. I did delete said comment. They are my kids and I love them just the way they are. I do the best that I can do. And until you walk a mile.....just shut up....if you don't like it don't read it!!!!
To those of you who read this blog and like to see the updates and the pictures, thank you....and feel free to leave comments!!

Pictures, Pictures and more pictures!

2009-07-19T23:51:00.015-05:00

Todays ER trip

2009-06-21T00:49:00.004-05:00

Was with Deze....yet again. She got ahold of a butter knife. I was in the room with her. Trying to get it from her before she was hurt. I cannot just run to her or she will run, that would have been much, much worse. She started to stab the wall. The knife slipped. It caught her a fingernails depth from her eye. Right on the bottom eye lid.
She went in to be sure she didn't damage the eye. She is ok. But it gave me a good scare. I swear I need to lock her up to protect her from well HER! The doctor said that she was VERY lucky. I will post pics when I can get some. She is sleeping now....I am on a borrowed computer, still no cord for ours.
I have been busy following Deze like a hawk lately. I am not sure what to do with her, there is only so much I can do.

How Gabe "plays" with toys

2009-06-21T00:42:00.002-05:00

Yes this is him playing with toys. Yes all he did was line them up. Yep that is all he will do with them. His favorite is the tonka truck. He pushes it around all the time. He will get a drink and push it to where he wants it, same with food. He will not allow his plate to be carried, it MUST go in the truck. And by this I mean if you don't put it in the truck you will hear about it for HOURS.

Please join us in welcoming..........

2009-06-21T00:34:00.003-05:00

Frosty midnight into our home! Yep you read the name right....its what happens when the kids fight over a name. This sweet kitten is about 9 weeks old, he was born on Easter day. We came across this kitten on Thursday. He was found by a sign in a yard that said "free kittens". Yes we are suckers. He lets the kids do anything to him and he sleeps with them at night. He fits right in.....Harlow pitched a fit about him....yet today we came home to find them sleeping snuggled up. Game over, we know they can get along!
So to bring you up to date we have as follows:
2 6 month old puppies (born on xmas) siblings. One boy, one girl, named tank and tina....

1 male bunny, Hamlet (he is fixed. the puppies not yet) we were told by a local pet specialist that the bunny is under the age of 2yrs!

1 spayed female cat named Harlow, we thought she was older. And have recently found out that she is young. Born sometime last summer.

1 new male kitten born on eater day, named Frosty midnight!

random pics!

2009-06-20T23:32:00.006-05:00

The pics you have just seen are random ones! There are some of injuries, others of markered on kids. And of the wonderful cat (Harlow) letting Gabe put hair bows in her fur. The kid with the hurt back is Tajia. She jumped from her bed and got the headboard. The toe is that of Deze's, it looks way, way worse in person! Hope you enjoyed!

trip to Senic national park with friends

2009-06-20T21:51:00.008-05:00

The kids had a blast! We walked the trails and had smores!

The stomache flu

2009-06-12T23:59:00.002-05:00

So on Wednesday Geromy started to feel sick....so he called into work while I took all 4 kids out alone for 3 hours....we went to cub foods and target. (I will post the details of that in a moment) I thought that he was the only sick one....that night about 10 pm Gabe vomits all over the place....I am up with him till 4am. Just as I get him to sleep I hear Tajia. She vomits all down the steps. And within minutes I hear Nomuken. It was a long night of little sleep and a long Thursday of cleaning up and doing laundry. Deze didn't get sick at all....guess that whole theroy or eating dirt keeps you heathly may be right on!
Thursday night I had a fever and was up with Gabe till 6am....at 6:45am Deze got up for the day. At which time I sent her in to wake up daddy....he was feeling better and running on lots of sleep. Gabe has not thrown up today...but then again he is afraid to eat.
They are all getting better slowly but surely. I hate it when Gabe has a fever. It seriously scares me....its hard to explain why. The main reason is cause he goes from wild and moving all the time to laying still for hours and only getting up to pee and puke. It is just not him at all...it seriously makes me worry that he is "near death".
I get that sounds odd to say....but when he goes from one extreme to the other it is odd to see. He is back to being wild though....
Wednesday morning we got the fence put in. I love, love, love it! Gabe and Deze are now trapped!!!! There are 2 gates to it, one is padlocked and the other has a hook lock on it. Once they figure out the hook lock it too will have a padlock.

So back to the trip to target and cub foods while letting Geromy rest on Wednesday. It was hell to say the least. I spend half the time prying Gabe off things. He wanted legos...and he was holding onto anything soild and dropping to the ground. He is 60lbs so not light. I would pick him up and walk and Deze would jump from the cart. I bet we were a sight to see! And the best part to it all is that through all the screaming and grabbing of things, I stayed calm. I didn't yell or respond to the other mother in cub foods that approached me to tell me how to make my kids listen......I wanted to, but didn't. We made it out of both stores with everything on the list....except for the dish soap....
I was happy that we all lived to make it home! I would love to take a shopping trip with 4 NT kids one day. Just one time, I want to see what it is like. I love my kids just the way that they are, I really do, but I wonder what things are like on the "other side" sometimes.

We got a letter from the school today. They are refusing all services for Deze. They do not believe that she needs any intervention.....ummm yea all kids jump off the fridge at 3.5 yrs old and break bones and keep on going without tears...so, so normal (where is the eye roll smiley face when I need it?)
They are saying her speech is normal....she does speak. It is all repeating. She calls herself Deze....she does not say "I" or "me " unless it is repeated? She says things like "Dezire want lunch?" its the same thing I ask her. Its her way of saying she is hungry.
I have also noticed that she is not eating any food that needs to be chewed....she is living on applesauce, jello, popsicles and ice cream. I am not sure what to do about this. She will chew on anything.....rocks, cig. butts.....you name it....but not eat it.
We are still on a borrowed cord......so I will update as a can....fighting warranty to get one....and on a side note, the puppies are potty trained!!! Now if only they would teach Deze!!!!

Here for a moment

2009-06-10T01:19:00.002-05:00

We have the computer back....it is far from fixed. Matter of fact its missing more keys then when it went in, and it didn't come back with a power cord. I am going to be on the phone with warranty all day if it takes it. They are going to fix it or send a new computer, up to them.
I am on a borrowed cord for a moment.

Deze's toe is doing better, not as infected....but it smells and looks horrible.
I have caught her on top of the fridge 2 times since then and on the top of the cabinets more then that. She does not care about pain at all...I have no idea what I am going to do with her. Even our friend who has a ASD kid says that Deze gives her a "run for her money" She is a hand ful, but we love her.
I cannot stay on here long. Its 1:30 am, I want to get Gabe to sleep. Have to be up at 7am or before with Deze. We are doing a huge yardsale this weekend......

posting update from the wii

2009-06-05T16:10:00.001-05:00

In the last week we have been to the ER 2 times in one day and the ped. 2 times. Last Saturday Deze jumped off the fridge. I was in the basement doing laundry. There was lots of blood. I called Geromy at work. Then took her to ER. The doctor was not nice, she said Deze was ok cause she was not crying. All she did was bandage the bleeding toe.

2 hours later Deze started to throw up. I took her back to ER. Same doctor. Said it was nothing to go home. Deze limped all day Sunday, went to ped. Monday. Ped. did xray. Deze has a surface fractue in her foot. And the toe is infected bad.

She was given oral antibotics and we soak the toe in epsom salt 4 times a day to draw out infection, Went back to ped. foday cause she will not take the antibotics. They are considering surgically taking nail to get infection, they will have 2 if she rips it.
She has not cried about the pain at all.She is still climbing and jumping off things. I don't know what to do with her.
I will update again soon. Takes forever to type on this thing.....

MIA

2009-05-28T01:21:00.002-05:00

To anyone that reads this blog we will be gone for a few weeks. Our computer bit the dust tonight....it is heading back in tomorrow to be fixed....it powered on long enough to get the pictures off of it. I am on a borrowed for 5 min computer at the moment. I am going to go nuts without internet for 3 weeks...or however long it takes to get fixed. I will update when we are back online, and of course have lots of pictures to share.
Thanks for reading this....hope that all is well with everyone for the next few weeks..

The newest addition to the family

2009-05-26T23:54:00.002-05:00

Nope its not her...just had to share the pics of how she passed out!

His name is Hamlet the bunny....we didn't plan on this ball of fluff....but a friend had him and he needed a home... and well I am a sucker. The kids love him (the bunny is fixed) and he loves kids. They carry him around, and yes I now have 2 dogs, 1 cat, 1 bunny and 4 kids running loose in my home. I have lost my mind.

Pics, updates and a funny story!

2009-05-26T12:01:00.012-05:00

There are the pics for the last few weeks. I have been lazy about uploading them....I need a new camera bad....its starting to not focus well. There are pictures of the tomato plants we are growing (all 45 of them!) The animal petting zoo they had on the last day of preschool, and some of the new lake/park we found. There are even a few of the kids husking the corn.
If the background in the picture shows a messy house and you don't like it...don't look!!!!!!
And if it really makes you mad, I would be ok with a fully paid for maid!!!!!!
Also wanted to update more about the kids.....Tajia lost her first tooth a few days back. And Gabe lost his second tooth. They are getting big fast!
Gabe had a huge melt down in Target while I had all 4 of them alone...its hard to push a cart and carry a 65lbs screaming kid....loved the looks I got on that one. Tajia and Nomuken were so embarrassed....Tajia did something that brought me to tears..
She turned to the lady that was talking very loudly about how HER son would NEVER act like that...and going on and on....and said to the women "I would hope not....but my brother has autism and if you know what google is, it would be nice if you learned BEFORE being so rude.....you really need a time out!"
Thats my girl! She is 5yr old...I think she has heard me one too many times!!!

Sleepless child

2009-05-26T11:52:00.002-05:00

Ok. So yesterday morning Gabe was up at 8am...he slept for 4 hours. Then he went and was up till 4am this morning....I had to lay down with him to get him to pass out. I am so tired...and the fact that its a dark raining day does not help me!
Deze was up till midnight....and up before 6am. Got to love that...the good news is that she helped herself to cereal. And since we are out of milk she ate it dry. So a vacuum was all that was needed.
I hope everyone had a good memorial day. We stayed home. And did nothing...we are used to not being invited anymore. Geromy gets invited out seperate of us alot...or one of his friends will come over at night. However he only has one friend that is ok with Gabe...and by this I mean that Gabe loves to wrestle. You walk into the house and he jumps you.....well one of Geromy's friends goes along with him...Gabe was thrilled!
I will be MIA soon. Our computer is going in for repairs. Its a piece of crap gateway. Thank god for the extended warranty we bought....its getting fixed for free!

Going to start eating coffee beans for meals

2009-05-25T02:36:00.002-05:00

Ok, so I am not really going to eat coffee beans for dinner. But it is tempting. It is 2:40am...Gabe and I are the only ones still up...last night he slept from 3am to 9am.....
I am not sure how he is ok with these hours. Geromy has been sleeping well over 2 hours.....and the girls have been out since 10.....I just want to pass out sitting up. I know I cannot cause he is not safe alone. If it hits 5am I will wake up Geromy and make him take over for an hour or 2.
Before anyone asks. We have been offered sleeping meds for him. More then once. I worry about mixing sleeping pills with the sezuires. I don't need the sezuires getting worse. So for now its like having a newborn....for the last 6yrs!!!

Yard sale prep

2009-05-24T19:10:00.002-05:00

So for the last few days I have been sorting things....what to sell and what to keep. Most the kids toys are going. Gabe only plays with legos....the rest of his toys are displayed on a shelf...this kid has spike that he does not touch. I cannot sell spike though cause he looks for him everynight to tell him good night.
Deze has 3 baby toys she will "play with". By that I mean throw to make light up...or stomp on them.

Nomuken and Tajia love toys.....so we will just get rid of the outgrown ones for them. Its sad having all these cool toys and 2 kids that could care less about them.
Somedays I just want to have 4 normal kids for one day....just one, I want to know what that would be like. For them and me, and Tajia and Nomuken.

Update:

2009-05-24T02:04:00.001-05:00

Gabe sleeping was short lived. He was back up at midnight....its now 2am and he is bouncing...I am so ready to sleep.......

So...

2009-05-23T20:45:00.004-05:00

Last night...or this morning however you want to look at it. Gabe went to sleep at 3am...got up at 8:30am....I am tired .....Nomuken has the tummy flu and is puking with runny poop (tmi) all over the place...
Gabe just fell asleep on me...at 8:45 at night. The bad news is that all the girls are still up and backup is not here to help out.

We found a tick on the girl puppy tonight (Tina). I hate ticks...

The people (if we can call them that) that live next to us are rude. Very, very rude. Loud music at all hours....tons of cars in and out of there all day and night. There is a 2yr old that lives there. We watch out for him, they just send him out to play. He comes in our yard. Which would not be so bad..if we didn't live so close to the river. You walk through our side yard...there is the garage, then the woods about 15 feet deep. Then there is a drop off into the river. The Mississippi river, its fast...and it scares the hell out of me.
I don't claim to be perfect...but I do watch my kids....and I am respectful of others!

On a side note....while I was helping Nomuken clean up after a vomit episode earlier, Tajia helped Deze....sweet you say? Did I forget to mention what she helped with? Tajia unlocked the medicine cabinet for Deze. Deze ate some Excedrin migraine, and used 3 boxes of bandaids on her stuffed animals.
She threw up 4 times from that....poison control said she would be ok...and so far she is. Tajia on the other hand........served her time out, and had to clean up the bandaid wrappers. She has been warned to NEVER do this again.....lets hope she listens.

Today has been

2009-05-22T01:00:00.002-05:00

Insanely long. It is 1am. Gabe is up and running still. I am not sure how much longer he is up for.
Deze has been picking at the scar on her back from the cuts a month or so back. She managed to break it open and made a good mess with blood on the wall.
The puppies get to live. They are mostly potty trained. We have been keeping on top of the potty thing with them. They are still going inside but only about once a day...rather then 5-10 times a day!
School is out here. As of last week I have all the kids all day long! If I have hair left at the end of the summer I will be lucky. I feel like I repeat myself 100 times a minute.
I am not sure what I am going to do with Deze. She is down to climbing on top of the fridge. As in she scales it, no chair or stool involved! Is it wrong to cage her? I would never do it..but I cannot say that I have never thought it!
I finally broke out the summer clothes today.

Something to read

2009-05-19T20:41:00.001-05:00

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Pictures from the conference!

2009-05-14T19:25:00.005-05:00

there were 3 on the sofa..........

2009-05-11T00:14:00.002-05:00

Happy mothers day...

2009-05-10T23:28:00.004-05:00

We planted flowers in the yard today. And Deze busted her lip open. Enjoy the pics, Hope all the mommy had a good mothers day!

This is a vent feel free to skip it!

2009-05-06T21:30:00.002-05:00

I know that this is supposed to be about autism all the time. However right now I need someone to talk to and all my friends are in bed. I really don't expect a soul to read this....
I am at the end of my rope. The house is a mess. There are piles of things that never get gotten to. I cannot deal with this. I am tired of having to pick up dirty socks all over.....and they are NOT the kids socks. I am sick of being the only one that knows how to do the dishes, cook and vacuum. Not to mention the laundry and sweeping/mopping.
I seriously feel unwanted right now. I am ready to just scream. I feel like I could just vanish and nobody would notice...except when the food was not on the table on time. I am stressed. About money, about possible eye surgery on Nomuken, the amount of fits that Deze has in 10 mins. lack of sleep, and so much more.
The girls were tucked in at 8 pm and they are up there playing and screaming that I am mean making them go to bed. For the last hour and a half.....I just want them to sleep. And I want a freaking bed to sleep on. Ours is ruined. Some how between all the packing and getting out the door I forgot to leave the cat with a liter box. She peed all over the bed.
The puppies are making me nuts. They are still not potty trained...and I don't think I have the time to do it. Geromy is down to less then 18 hours a week at work. And I still have to ask literally 10 times to get the trash taken out.

We made it

2009-05-01T20:32:00.001-05:00

We made it to Minneapolis. All in one piece, have to pay for the net at the hotel....so not able to update much. The kids are having fun. We are learning tons of info! We will be home on Sunday and I will have pictures to share!!

We are on the way......

2009-04-29T12:31:00.002-05:00

Out the door in about 5 min. to the autsim conference in Minneaoplis. If you read this please wish us luck, it has not been a smooth start. We woke up to a flat tire and leaking oil. They are both fixed....but it took a chunck out of the money for food at the hotel. So we are flying by the seat of our pants at the moment.
Gabe is freaking out. He wants to bring his room with us. Deze is doing nothing but screaming. I am on 4 hours of sleep....
I will update this tonight to tell everyone that we made it in one piece. I am worried about this drive. I am worried if Gabe has to pee on the way...he will NOT use the side of the road or a gas station, has to be something he knows (McDonalds, hotel...)
I am also worried cause last night Deze ripped the scab off her back....she is started to self harm more...and I am worried about her or Gabe making a run for it from the hotel.

NO sleep tonight!

2009-04-28T02:04:00.003-05:00

It is 2am. Gabe is up....and wide awake. I am ready to fall over...I am on my last soda. And we are out of coffee! I have to be up at 7 am with the girls, we have appointments all day long. I just want him to sleep. Everyone else is sleeping...but me and Gabe. I cannot fall asleep with him up, or he will get out.
So here I sit, fighting to keep my eyes open. Hoping that the sleep fairy visits him soon, very soon!
I never realized how lucky I was to get 8 hours a night before Gabe regressed. Now I am lucky to get in 4 hours in a row....

Update: he passed out at 5:20 am...so I got to sleep from then to 8:20....I slept through the darn alarm, the girls were late to school. I have a horrible headache. I want to sleep, but have appointments to go to and things to wash and pack for the trip tomorrow!

I may be MIA for a few days.

2009-04-27T22:50:00.002-05:00

I am not sure that the internet at the hotel will agree with our computer.
We are leaving this Wednesday for a 4 day conference in Minneapolis. It is all about autism. How to play with the kids to help them to learn. What to do as they get older. How to handle the meltdowns better. Toys that can help them to learn.
TONS of info! I am excited. I have started to get things ready now as the next 2 days are full of meetings and doctor appointments.
The kids are thrilled they get to go swimming, I found the life jackets. So I can take all of the alone while Geromy is at the night conferences. We are hitting up the dollar store to buy cheap toys for there too. Ones I don't care if they break, and hope they don't make it home!!!

When Deze wants kool-aid

2009-04-24T20:37:00.003-05:00

She helps herself!

Tonight I was tucking in the girls. When I hear Gabe say "mommy kiss miss come" (christmas) Not understanding what he means I told him just a minute. I get to him and ask him again. He drags me to the door and starts to jump up and down....saying "santa!"
This is the view that greets me:

a day at the park!

2009-04-22T23:56:00.002-05:00

random pictures!

2009-04-17T17:55:00.008-05:00

What happens when mom gets sick of high prices?

2009-04-17T17:48:00.002-05:00

We make tortillas at home! We made 20 of them for less then a dollar....and the kids had fun helping....
Tomorrows task is laundry soap....and planting of the tomatoes.

We got answers.....

2009-04-16T15:57:00.002-05:00

Dezire was diagnosed today. She has moderate to severe Autism. She also has a severe speech delay, I don't remember the name of it, and a major lack of understanding of facial expressions.
We will have the report in 2 weeks. I am happy that we have answers, and sad all the same breath.
The reason she does not respond to pain is not a lack of feeling, it is a lack of knowing how to react.
They say that you are never given more then you can handle. I either under estimate myself or someone of greater powers over estimated what I could handle.

In 12 hours

2009-04-16T01:18:00.002-05:00

from now...so at 1pm we will be in an appointment for Deze. It is with a child psychologist and behavioral therapist. We may have answers soon. They may not be what we want to hear, but we need to know how we can help her.
This may be a bitter sweet day. Where as I know that something is "not right" about her, at the same time I would prefer to think I am insane and she is fine! I hate this feeling. I did the same thing with Gabe. I know what was going on with him, yet I WANTED someone to tell me I was nuts and the kid was fine.
Deze's back is doing good...a little blood today, I caught her itching it. I will get a picture of it tomorrow.
Wish us luck with the appointment! I will update as soon as I can....

So I spoke way to soon about it being a bad day.

2009-04-13T23:33:00.001-05:00

I was doing the dishes after dinner and the girls were all tucked into bed, or so I thought. Deze comes downstairs and is telling me she wants a drink of water, I tell her no and ship her back up. Then she comes down 2 min later and says her back hurts. I look and see a small scratch and tell her to go back to bed. She reach into her pullup under the small scratch and gets blood all over her hands.
I investigate and find 2 very deep scratches. So deep that they are barely bleeding. She is not crying, so I give her Tylenol and call Geromy to tell him to get home from work so I can get her to the ER.
Long story short we have no idea what caused the boo boo. She has 3 tubes of liquid stitches and a bandage strip that holds it together.
She didn't cry, we have no idea what happened to her. She didn't cry at the hospital when all the docs cleaned it....or sealed it up.
She got a piece of gum and 3 stickers out of the deal. There are 15 min left of the day. I am praying that the worst is over....I am not sure I can take anymore for the day!

Stressful day at its finest

2009-04-13T20:53:00.002-05:00

I ran downstairs to change over the clothes. I was downstairs less then 3 min. As I get up stairs I hear someone running across the floor to the top of the steps. It was Tajia. "Gabe left, he went to the park mommy"
The words that make your heart simply stop and panic shoot through you.
I grabbed my keys. Told Tajia to stay in the house. Do not leave...and do not open the door. I had no other choice.
To those of you that don't know we live right next to a river. That was my first thought. So I ran to the river and looked in there, not seeing him, I started to yell. I took out my cell and started to call 911, just as it connects I hear the girls yelling out the window that he is in the park, they can see him.
Sure enough he was about 2 blocks over in the park. On a swing. I got to him and he just looks at me and says "Gabe go swing mommy"
I carried him home, in tears...It was terrifying to say the least. I got him home and held him, told him it was not ok. He cried saying sorry over and over. He thought I was mad.
He is sleeping now. There will be alarms on that door in the morning, I have been asking for them to be put on for 2 months. I am doing it myself now.
I has been a long day....

Tomorrow ..

2009-04-12T20:41:00.002-05:00

We get to buy a pair of glasses out of pocket for Nomuken. Hers are broken. They lasted for 4 months. At nearly 150 a pop this is going to be expensive! I know that is cheaper then most kids glasses...but we don't exactly have a high income. That is more then half of what is left after rent and utilities.
On a side note I am frustrated with the world for the moment. I am sick of people judging my kids. I know they are loud, I know that they get wild. I know that my son looses it alot. And I am sick of loosing friends over this. It hurts that people are so fast to judge a kid with autism....it kills me that they can say and do such hurtful things. I know that he is too much for some. Same with Deze. It is not something he can help.
If you cannot deal with him or her, walk away. Please don't be my friend for pity reasons.
My fathers side of the family does not believe in autism, thought Gabe was too loud. We cut them from our lives for a reason. If you cannot accept him, then I cannot accept you.
Unless you live my life, walk a mile in my shoes or however you want to word it....please do not judge.
For those of you that love my kids just the way that they are thank you.

HAPPY EASTER!

2009-04-12T18:00:00.017-05:00

Preping for easter...so pics is all you get for the moment!

2009-04-11T12:00:00.004-05:00

what is play dough for you ask?

2009-04-09T23:50:00.002-05:00

Well if you were to ask Gabe he would say for hitting.
Tajia would tell you its for making things and having fun!
Nomuken would tell you its for her!
Deze would tell you that it fits in her nose nicely! Causing the other nostril to bleed. I did not take pics (sorry) it was a good sized piece she stuffed up there....hot pink in color. I got MOST of it out...hopefully the rest comes too or into the doctor we go in the morning!
Got to finish boiling up 10 dozen eggs....I will post again tomorrow!

update on appointments!

2009-04-05T01:34:00.002-05:00

We have an appointment for Deze to get into a childs behavioral therapist and shrink on the 16th of this month. This is a good one, one that her neurologist recommended. I am hoping to get some answers. I want help for her. She needs it.

We also have a state autism conference we are going to a the end of the month. Its a 4 day long event. Should be...interesting!

Meltdowns suck

2009-04-05T01:22:00.002-05:00

Today we braved it and went to McDonalds....for the first time in months. And now I remember why we didn't go. I want to make a billboard that tells people to be nice. Gabe lost it. I mean lost it big in there....he was screaming, biting me, and kicking. A mom (of one of his classmates that is "normal") says very loudly that "people with spoiled kids should not take them in public"
She knows Gabe has autism....I was trying to pick him up (Geromy took all 3 girls out to the van) and he grabbed a chair. He threw said chair across the play area. It was loud....we had about 30 people staring at this point.
I stayed calm (I have no idea how) and pried him off of the things he was grabbing and carried him screaming out to the van. Once in the van I buckled him into his carseat, got into the front seat and cried.
It was bad enough that the other mother was mean. It was worse that she knows us, she knows and she was mean.......

To whom it may concern:

2009-04-03T17:26:00.004-05:00

In case you are wondering, Easter egg dye tablets are not harmful when eaten ...in groups of 6. I had them on top of the kitchen counters...WAY up high. Went to the potty and came back out to a mess and dye all over. No pics this time sorry....was busy calling poison control.....I think that my "case" is going to be the joke of the day there!!
Glad someone could find the time to laugh as it was going on. There are not enough padlocks in the world for this child!!

So it took me a month...

2009-04-02T21:01:00.002-05:00

But I finally got the basement done....there is a mini trampoline down there, a ball that Gabe can sit and hop on, a yoga ball and lots of sensory things. Going to make a sensory wall for him....and getting mats for him on the floor that are textured. Its a touchy feely area. He loves it! I will post pics when done...I want to paint it eventually, but it is a one step at a time thing.
The negative is that he is a 5 am kiddos for a week now. 5am to bed....I am wore out..