Christmas with autism

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

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........

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

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!

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!

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!

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!

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?

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!

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....

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.......

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?

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

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

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....

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!

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.......