One of those weeks

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Registered: 02-20-2001
One of those weeks
8
Fri, 01-27-2006 - 10:53pm

Well I am having one of those weeks where I am really worried about Bobby.

 


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iVillage Member
Registered: 08-26-2005
Fri, 01-27-2006 - 11:49pm
Tina,
(((HUGS)))
It must be something in the air because Jake is being really sensory lately. I just spoke about it yesterday with the OT. For the last 2 weeks around the same time every day he just runs in circles through the living room, dining room up the hall and through the kitchen. I've tried redirecting him but it's not working so the OT thinks he's seeking movement and suggested a bouncing castle or a mini trampoline. This is the kid that would avoid movement at all costs(LOL).He also now seems to be becoming more tactile defensive which was never an issue for him before. If any food gets on him while he's eating he freaks out. I have to feed him again just so he'll eat. It's so frustrating because he seems to have gone from being undersensitive to over, it just makes you want to scream. I know with Jake I see a lot of anxiety now because I think he has become more aware of things that are difficult for him. He has at least one meltdown every week during PT and ST.I notice a lot of repetitive play with Jake when he's about to make a leap in his development. Does this happen with Bobby? Could that be what's going on? As far as speech goes I know where you are coming from. I often wonder if I'll ever get a sentence out of Jake that dosen't include at least one Thomas the Tank character.He has a huge vocabulary and can say just about any word but putting into a meaningful conversation is just to difficult for him right now.
I always question if I'm doing enough.I am certain you are doing everything you possibly can for Bobby so try not to doubt yourself on that.
Teresa
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Registered: 06-09-2005
Sat, 01-28-2006 - 10:28am

I have an observation I wanted to share.. It is just something that I noticed with my son, it may or may not apply to your kids.. but I just wanted to pass it along. Maybe it will help, maybe not.

Ryan has always had alot of "sensory" issues, in fact it's those issues that first prompted us to seek help from professionals. With time and therapy, the sensory issues are not a big deal anymore. But ever since Ryan was little, I have noticed an increase in his Aspie or Autie behavior, as well as sensory stuff, in Jan and Feb. I'm in PA, so it's typically really cold in these months. We are not a "winter sports" kind of family, so we don't get out for physical activity much in Jan and Feb, and my unofficial theory is that Ryan (6 AS) does not get enough physical exercise to keep him organized or satisfy his sensory needs. His old OT gave me instructions for a sensory diet.. so we really try and follow it in the winter and it does help. As you know, the weather in PA has been pretty mild so far this year.. so we've had more opportunities to get outside. Today we plan to do some hiking at Hawk Mountain.. and then try helping Ryan ride his bike (he still is still struggling with riding even with training wheels). Another problem we have with trying to get ds some exercise is that although he needs a lot of activity, he has gross motor problems and is clumsy and uncoordinated, so it is difficult for him to participate in any kids sports activities.. he can't keep up. His does take swimming classes though, which he loves.

Anyway, before I start to ramble.. that's my story.

Kate

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Registered: 06-25-2003
Sat, 01-28-2006 - 11:21am

Tina,

Sorry, this will be short. I am rushing, but wanted to add my 2¢.

I have a strong feeling that the "downside" and "upside" you mentioned are related. Bobby is mastering a new skill, and a big one. We observed a pattern in Peter: Whenever he gained a new skill, he regressed in other areas for a short while. Then those other areas normalised again, and he was improved overall. A graph of his delelopment would look like the stock market: Lots of ups and downs, but the trend over time was steadily upwards.

Also, politely tell that teacher to back off. You are the mom. Medical decisions regarding your son are your decisions, and only yours.

HTH
-Paula

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 02-24-2004
Sat, 01-28-2006 - 11:39am

Tina,

I just wanted to let you know that Nathan has had his ups and downs too. Alot of what you described Bobby doing...is what Nathan did when he was younger.

I also wanted to say that with speech therapy Bobby will progress, you will eventually be able to have some conversation with him. Keep helping him with his speech at home....he can never get enough talking!! For him, its practice!!! Nathan still doesn't tell me everything that is going on at school, but if I ask, I do get bits and pieces from him. Sometimes he will just start saying something about school and what happened, and I'll keep questioning him. It turns into a little conversation. We're still working on the whole "give and take" though in conversations!! But he's doing ok with it. And when having "conversations" with him, it needs to be quiet and not so hectic. I get better responses from him this way.

And I also agree with Paula, medical decisions regarding YOUR son...should be left up to you, not the teacher or the school. I'm not one for confrontation, so I usually try and say something politely to let them know where I stand.

michelle

iVillage Member
Registered: 10-03-2004
Sat, 01-28-2006 - 7:17pm

Michelle,

Yes on the constantly working on conversations give, give, give, demonstrate both sides, draw him out, keep it always fun, have dolls and stuffed animals have funny conversations in front of him. My dh has been doing the stuffed animals as a TV game show for Malcolm (age 8, PDD-NOS) called, for no reason I can ever figure from the content, "The Paddington and Burry Show!!!" for many years now!

and, Yes on the quiet times one-on-one now being the absolute best. I can just weep for joy while we are having these AMAZING conversations at bedtime --- about other kids, things that happened today, things he wants out of life and things he is thinking deeply about, what makes him angry, and the meaning of the universe, etc. When noone else is there, after long soaking bath and story and snuggle, the floodgates often open up. And slowly, year after year, his reciprical conversation is improving, improving, now even when life is noisy and chaotic around him.

I even had this late night talking happen when one of Malcolm's best, best buddies slept over and all 3 of us started talking. Why do I never think to just hide the tape recorder in there and hit it every night as I crawl in in case one of these treasure conversations happen? I just know when I am very old, I will want to relisten. HMMMM.

I remember wondering if I would ever get to have conversations with him when he was little...

And one more note, I do believe it is actually ILLEGAL for any school personnel to try to push on medication, that teacher could be brought up on charges... I would either gently inform her of this or possibly just photocopy the paragraphs out of IDEA (I think it's in there, but I know this is the law, others here will know where).

yours,

Sara
ilovemalcolm

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Registered: 03-26-2003
Sat, 01-28-2006 - 9:15pm

Big hugs to you. I hate regressions no matter what. Been there too often but I have to totally agree with Kate. When we lived in Massachusetts we noticed a marked difference in Cait's behavior over the winter months. There are a number of things that add to this but one is definitely weather related.

I am sure you have heard of Seasonal Affective Disorder? Well I think the same things are at play here. You have sensory kids who typically have issues with clothing, light, temperature and need regular sensory input. Stick them in a situation where for months they have to wear heavy clothes, go through changes and putting on heavier clothes everytime they go outside, they don't get as much sensory input because they can't go outside as much and not at all without all those dreaded clothes. They can't go swimming, or play on the playground.

Add onto that a nice healthy dose of holiday overstimulation that suddently stops and BAM. You have a kid who just can't take it anymore. Oh and don't forget that there was a full moon about a week ago too. Yup, that affects my kids. I have noticed it.

One of the reasons I agreed to move to S. Cali was because of how much Cait regressed each winter into a much more autistic individual. She had severe clothing issues. It is some better but we still notice that from January to about April are really really tough.

Renee

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Registered: 04-06-2005
Sun, 01-29-2006 - 12:41am

Tina!!

Kiki has been acting really odd lately, too. But he is also beginning (crossed fingers here) to use declarative language and he has even used a few complete sentences this week, both at home and at school. But I was so freaked out about his behavior at breakfast on Tuesday morn (he was just acting goofy and not making good eye contact ) that I called Hillary at the close of day just to see how he did. She said that he had a tough day, but she chalked it up to first day of a cold (which it was) with runny nose and eye rubbing.

But I do know with Kiki that twice before in the past year he has had two to three weeks of what seems like regressive behavior (poor eye contact, tons of stimming, etc) that was followed by big leaps forward (first time was when he began to talk and second time was when he actually began asking for things verbally), so I'm hoping that this latest phase is the regressive before the big jump forward again. Who knows....?

But, I will say that Hillary was so supportive on the phone. She was positive about Kiki and most importantly, she assured me that if she saw anything that concerned her even a little bit "in the data" (they take tons of data in Kiki's class) that she would let me know right away. I felt so much calmer after speaking with her. I felt like we were a team, which is what you want to feel like with your son's teacher.

Maybe you can conference with S and the aides one of these Fridays and see what you can resolve with her face to face. I can tell she's beginning to really piss you off and not that you want to move Bobby---in fact, since he loves the class so much I think that would be a bad idea---but just to get her to chill out. You see the medication working in his behaviors at home, so there is a new result to taking the meds. It's not the result that she perhaps would like, but too bad.

I also read the Susan Senator book last week, and that TOTALLY freaked me out. It is a beautifully written and thoughtful book, but the stories of the behavioral problems she had with her son, Nat, just scared me stiff. I kept thinking as I was reading, "Oh my God, could this happen to Kiki? Oh my God, could this be my life in 10 years? Have I been fooling myself that I've been seeing improvement in him? Is he really regressing and how far will he regress? Will he develop behavior problems? !!!!!!!" It just freaked me out.

I think there is such a thing as reading too much. And I've had to, as my hubby says, "Put DOWN the book, maam, step AWAY from the BOOK!!!" :?>

I've been meaning to call you...will have to call you tomorrow.
Take care!!
Gemma

iVillage Member
Registered: 10-03-2004
Sun, 01-29-2006 - 10:05am

Gemma,

Oh, I am totally stealing that one, thank your hubby for me. "Put DOWN the book, Ma'am, Step AWAY from the BOOK." Too good. LOL alot.

Sara
ilovemalcolm