I feel so lost and I need encouragement or answers (DS w/ SPD, AS, XXY?) - Mothering Forums

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#1 of 6 Old 01-28-2009, 09:03 PM - Thread Starter
 
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I wrote a post the other day because we were supposed to get in to see the neurologist and I didn't know what to expect, but it snowed that morning and we had to cancel (we live a few hours away from the neuro and have to drive over a mountain pass to get there).

So I was nervous to see the neuro, but glad to get some guidance or help understanding my DS. Now we have to wait until mid april for an appointment and I'm already so desparate.

A little background on 3.5 year old DS:
He was born 4 weeks early and had I a terrible time getting him to nurse, plus he had bad reflux. He wasn't a very high need baby, but he tended to get upset around alot of people (at a party or shopping). At 13 months he started drawing--he constantly carried a little notebook around with him and would draw shapes, mostly circles. He didn't speak until around age 2 (that's when we started speech therapy) and then he was diagnosed with apraxia. At age 2.5, we underwent a daylong autism evaluation, and though he had certain autism-like behaviors (lining up toys, ritual behaviors, and the speech issues), they "couldn't place him" at that time (on the spectrum) because he interacted well, had great eye contact. He also has a very slight intention tremor.

He goes to preschool through early intervention and does well, but over the past 6 months or so I've noticed some behaviors are getting worse/more noticeable.

-greater sensitivity to clothing textures, light, sounds

-greater need to move, bounce, bang, spin (he could spin FOREVER and never gets dizzy)

-Exhibiting an increase in echolalia (I think I kept telling myself that he was only repeating so much because he was so delayed in speaking, but now I can't deny it), probably 85% off what he says. If asked a question he rarely comes up with his own answer, just repeats what I've said.

-He recites shows that he watches when he tries to fall asleep. He memorizes everything and could spend hours reciting.

-Going to bed is a huge struggle. I think he's anxious.

-His behavior is very often unmanageable. He screams, he can become physical, he seems unable to handle any change in routine. He has a meltdown multiple times a day.

-Tends to interact less with peers, but enjoys older kids or kid's his same size (he's very tall for his age).

I just don't know what to do. I just need a diagnoses or some understanding or some more help for him. My DH is an incredibly easy going type of person that never seems to worry, but he also has an autistic brother so I think he might be dreading the idea that there is something going on with his own son beyond apraxia. And I have a young cousin who has Asperger's and her mother, my aunt, is always telling me that she's sure that DS has Asperger's, which scares me to hear. And I keep losing my patience with him and end up feeling HORRIBLE because I feel he can't help it. I just feel alone and would love reading suggestions or any advice.

Oh, and he is obsessed with Thomas and loves to lay on the floor and roll the trains right by his face, loves that perspective.
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#2 of 6 Old 01-28-2009, 09:45 PM
 
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Originally Posted by Rowan Tree View Post
And I have a young cousin who has Asperger's and her mother, my aunt, is always telling me that she's sure that DS has Asperger's, which scares me to hear.
Why? It's ok! What makes you scared of AS?

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And I keep losing my patience with him and end up feeling HORRIBLE because I feel he can't help it. I just feel alone and would love reading suggestions or any advice.
I have lost my patience w/ my Aspie a million times. He's going to be 9 in April and we still have our issues sometimes. All you can do is keep moving forward. It DOES get better, I promise! I found ds1's toddler and preschool years to be most difficult. (Couple that w/ our then-undiagnosed dd who is 18 mos younger than ds1 and you can spell CHAOS. She was recently dx'd w/ ADHD, Sensory Processing Disorder, anxiety, and dysgraphia.) It gets better w/ time. Just keep remembering that.

I'd recommend getting involved w/ some Asperger's groups (yahoo groups is good for that), local or not, just so you have a place to vent, seek advice, whatever you need. The more support networks you have the easier it will be to get through each day.

I can't tell you how many times I had to get through the days just an hour at a time. But it does get better.

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Oh, and he is obsessed with Thomas and loves to lay on the floor and roll the trains right by his face, loves that perspective.
Ds1 never played w/ cars and trains the way most kids do. (He collects and sorts.) My 14 mo old Ds2, however, will "drive" anything he can find! He was driving a piece of bread the other day.

You'll get through this.

 upsidedown.gif  Please see my Community Profile! energy.gif blogging.jpg about Asperger's Syndrome!

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#3 of 6 Old 01-29-2009, 12:38 AM - Thread Starter
 
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Thanks so much for the reply. :

I guess I'm scared of the challenges at hand and of what will come. I'm worried that I won't have enough to give, or that every time I loose my patience, I makes things worse for him.
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#4 of 6 Old 01-29-2009, 02:12 AM
 
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Is your son officially diagnosed with autism? What was the xxy in your title? Is he diagnosed with KS or are you just concerned that he is showing those symptoms? Sorry - I wasn't sure what to respond to. My son has SPD and XXY (KS). He has a lot of the same behaviors that you mentioned although your son seems to have more of the repedative behavior. We always say that he is "autistic-ish". He exhibits so many autistic traits but he is NOT autistic. The lining up, the social issues, etc. He was also diagnosed with dyspraxia recently, didn't walk until 2, cries, screams anything you can think of.

We got him into OT and a preschool program and we really saw his biggest improvements with OT. It seemed that his SPD was causing a lot more issues than I thought (I thought it was simply a clothing issue but the more I learned I realized that those sensitivities carried over into everything including the way he plays with his siblings).

My son does wonderful now. And yes there are days when I lose my temper and I feel absolutely awful and I'm sure that there will ALWAYS be those days. But it improves. It really really does. And I'm telling you this after he screamed for an hour earlier and I had NO idea what it was about. He even ran out of the house. And I still have no idea what it was about.

But then earlier his school director told me how much of a pleasure he is and how he has this infectious laugh and then DS saved a grape that he teacher handed him on the way out for his little sister. Melts your heart.

And the thomas thing.......he lays on the floor for hours and watches the wheels and use to turn his highchair over to spin the wheels as a baby. The specialist tells me that he needs to find a way to destress and that is just his way so I've learned to leave him alone at those times....and lining up toys and sorting. The other day we were in the store and I told him he could get a car (he doesn't play with anything without wheels). Well he kept screaming and screaming and pointing and I had NO idea what he wanted. Turns out he wanted this white car that was wayyyyy in the back that I hadn't even seen. Ok...whatever. We get home and he goes in his room to play. When I went in to check on him he had that white car and two others that matched it that he already had lined up in a row. He wasn't even "playing" with it. He just wanted it because it matched and he wanted to line it up!
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#5 of 6 Old 01-29-2009, 02:32 AM
 
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Ok - I just saw another one of your posts where you said about your worry about XXY. Your son does have a lot of the same characteristics as my son. A geneticists can give you a confirmation because there are no "typical" KS behaviors. Only 25% of KS men are ever even diagnosed and I believe the statistic is that 1/4 of those are diagnosed simply because of their infertility. The behaviors range from maybe a simple learning issue (maybe not so great at reading) to cases of ODD and bipolar.

The first step would be to see a geneticist. Is your son flatfooted? That is another physical symptom.

Like I said - my son is doing wonderful right now. They even believe he has a higher IQ than average and the specialist thinks he is ready to learn to read (at 3.5). The thing is about these kids is that they tend to be extremely loving and many parents have talked about how friendly they are with others in school and that everyone just loves their kids. I look at the way my son reacts to others now and I think that just simply isn't possible but its something you hear over and over again.

Oh...and a lot of his behaviors are attributed to the dyspraxia. The way the specialist put is is that our son is extremely bright and it must be extremely frustrating for him because people tend to talk in baby talk to him and yet his brain isn't at that level. We've started signs to try to help with that. Repeating what others have said is his own form of therapy and trying to make the connections in his brain. The more he has learned to talk the more those have lessened.

And my son NEVER answers a question directly. That's part of the dyspraxia (which is very very common in KS boys). I have to keep giving answers and he will eventually answer yes to something.

Not being able to handle a change in routine is a BIG thing for him as well. To the point that I really thought he had another diagnosis in there somewhere. We had to go through the same door at school, put our shoes on in the same manner etc etc etc. Everyone has told me I can't give into those behaviors. I talk to him more and tell him each step that we are doing. I don't give him the option on NOT going in the door I choose etc. I think that with OT has really helped in that area. Some days are worse than others but some are wonderful too.
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#6 of 6 Old 01-29-2009, 04:26 AM - Thread Starter
 
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Originally Posted by 4imprints View Post
The other day we were in the store and I told him he could get a car (he doesn't play with anything without wheels). Well he kept screaming and screaming and pointing and I had NO idea what he wanted. Turns out he wanted this white car that was wayyyyy in the back that I hadn't even seen. Ok...whatever. We get home and he goes in his room to play. When I went in to check on him he had that white car and two others that matched it that he already had lined up in a row. He wasn't even "playing" with it. He just wanted it because it matched and he wanted to line it up!
That's great! That is SOOOOO something my DS would do.

I never knew about XXY/KS until I googled "intention tremor & SPD." Things just really seemed to click. I'm going to ask the neuro for chromosone testing for sure.
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