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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

New to the community

Posted by on Apr. 4, 2013 at 2:52 PM
  • 16 Replies

Hi,

I am new to the community. I am lookinf for support and for people who can understand what I go through on a daily basis. When my son(now 6) was 2 years old we found out that he had a condition called VPI. That is where the soft palate is too short and greatly affects speech. At the age of 2 he had no non-verbal communication and very little verbal. He never babbled or cooed. Started smiling at 6 months and even then it was rare. We meet with a speech therapist who recognized the VPI and said possible Aspergers. We all kinda brushed off the Aspergers and blamed everythin on the VPI, which I really can't separate the symptoms of the two. When he was 4 the Dr agreed to do surgery. Now my son could talk understandabley. However we were still having problems and last summer they got worse to where we wanted to seek help. He has major meltdowns at the drop of a hat, spazzes out if things change, is super literal, doesn't get sarcasm or hummor. He has also started baby talking and mumbling lately, when I know he can soeak clearly. He had 4 years of speech therapy to do so. Mostly this is when he is nervous, shy, upset, sad... He chews on stuff when he is upset. Mostly his blue blankie and T shirts. He also dosent seem to understand certain thing and I have to phrase in a positive manner if it is something negative. He is high functioning, so I know it's not near what some deal with. That's a little background on my son, of course there is more. Over all he is a smart, cute little man and I love him like crazy, but at times I feel like I am hanging by a thread and at a loss at what to do. I also have an 8 year old daughter who is ADHD and I would rather deal with her than my son at their worse times. I know it sounds bad, her stuff is just easier.

Please feel free to leave your thoughts, suggestion, question or whatever. I am an open book. ;-)

by on Apr. 4, 2013 at 2:52 PM
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Replies (1-10):
Charizma77
by Carissa on Apr. 4, 2013 at 3:04 PM

Welcome to the group!

KatyTylersMom
by on Apr. 4, 2013 at 3:11 PM

Welcome! I am the opposite in that my daughter and I can drive each other up and down the wall in one second flat but my more affected autistic son and I get on like peas and carrots.  People have personalities regardless of autism and sometimes, particularly with kids you see all the time who are well versed in the locations of all your buttons, it's harder to stay calm and supportive with one or the other. 

lml07
by on Apr. 4, 2013 at 3:19 PM

I guess with my son it's the constant meldowns over small things and his freak outs and such that are hard for me to handle. I can handle my daughter saying she hate me better. It's also likelt that because I feel that I have to be the one to take care of my son that maybe it wears on me a little. My husband finds it extremely hard. Esp with the freak outs and meltdowns. I also think my husband is in denial about it too.

mypbandj
by Jen on Apr. 4, 2013 at 3:24 PM

So are you now starting to think that he may be on the autism spectrum? Does he have an IEP at school? 

lml07
by on Apr. 4, 2013 at 3:46 PM

We are seeing a therapist currently. She says that he has alot of the symptoms of Aspergers and is leaning that way. He has been dx with a Sensory disorder, So I guess a combonation of the two. The therapist has 4 other boys with Aspergers and says that Logan falls in with them. They tell me that he is deffinantly on the spectrum, butt it is often hard to pin point where. His speech therapist does IEP for him, but nothing education wise. His grades are average right now, although I do worry about when he enters 1st grade. He doesn't do well when people other then his teacher administer his tests, PALS, SOL..... or when they do group testing. The teacher lets him sit up off the ground in a chair because carpet time is hard for him. He gets restless, he tells me he doesn't like the kids crowding him. He is big on that. He can't have people on both sides of him. His teacher is awesome and noticed it, she did one one with him on the same tests and he did so much better. There are sepcial education classes in our community, but not at the school my kids go to. Recently I have been getting notes, weekly, that says he has trouble stay on task, keeping focus, and talking when he's not supposed to. He is often very confused to why he has to do his color changes. He knows why his teacher said, but often doesn't connect it to his actions, if that makes sense.  Sorry, I know a digress.

amonkeymom
by Amy on Apr. 4, 2013 at 4:21 PM

Welcome to the group!

My son has a hard time understanding consequences as well and why certain actions have negative consequences.  It can be frustrating, but in our case it means a lot of discussion.

dustykitty
by on Apr. 4, 2013 at 4:32 PM

Welcome.  It sounds like your sound is on the specturm.  It would be a good idea to have him formally diagnosis especially for when he starts school.  That way you get all the services he needs. Also I know in the state of IL, I am also pretty sure in most states, if service can not be provided to your child so they can get a free and safe education, then the school has to pay for his transportation to a place that can handle his education needs.  I know the wording is wrong about the free and safe education, but I can't think of the right wording right now.  Anyway, it just means that what ever services your child for his education, the school needs to fine a way to provide it.  You as the parent may need to push them some, but it will be worth it in the end.  Good luck.

lml07
by on Apr. 4, 2013 at 4:36 PM

Yeah, My son has to have everything explained in explicit detail, does not matter what it is. He's not a whole picture kinda person. We use calendars and timers to help him understand time and when events are going to happen. He always wants to know how many days away an event is. Can be annoying but also cute.

LostInLove2002
by on Apr. 4, 2013 at 4:37 PM
Hello darlin' and welcome! I'm fairly new here too. My ds who is 10 was recently diagnosed with Aspergers and SPD. Initially the SPD was misunderstood as ADHD and it's easy to do. Your son has MANY of the same symptoms as mine. Right down to the T shirt chewing. He says it makes him happy. :) It's a self soothing technique he has learned. I'm reading a book that I think will help you. I know, READING. Where to find the time, how to sort through what will help and so on. This is an EASY read and you'll see your ds in the pages right away. Very early on you'll get an education. It really sounds like he's got SPD with a side of Asperger's. ;) That's what I call it here. Please find and read "The Out of Sync Child" by Caol Stock Kranowitz M.A. You won't be sorry. In fact, within a few pages you'll be willing to break the arm of anyone messing with your book. HUGS to you and if I can help you in any way I'd love to. Like I said, reading about your child was like reading about mine.
dustykitty
by on Apr. 4, 2013 at 4:40 PM

About the color changes, your son may not be making the connection between the color changes and his actions.  Austic kids don't.  They don't understand body language and how their actions will affect someone or something.  It also sounds like the teacher is not helping either.  If it is a pattern, then something should be said and someone should figure out how to deal with it better.  They use the color changes in my son's classroom too.  If my son has to change colors, the teacher makes sure he understands why, in his terms.  Your son's teacher does not sound like she is doing that.

Also, denial is part of life especially when you have a child with special needs.  It took my husband longer to accept it then me.  Once he did, he has been biggest cheerleader when it comes to both of my sons.  Give him some time to absorb the information and process it.  Most men think that produced a "defective" child, when their child is not like everyone elses.  Once they get pass that blame stage, things usually flow a little smoother.

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