DownSyn Forum

Helen

Hey up

When Matt regressed and was later diagnosed with autism, I joined the DS-ASD Yahoo group. But have since left. But one thing stuck with me.

When I joined, I told them my story with Matt and about his regression. A number of people responded, and a few said they understood as they'd been there too. However, one really stood out to me, and, at the time, just increased my feelings of hopelessness. And as I enjoyed Matt's developments, recently, I remembered what she wrote.

She told me her child had regressed, similar to Matt, when he was around 4. He went to school and despite of his autism, he learnt to read, write and communicate. Then something significant happened in his life, and he regressed again, and lost those skills. A few years later, he learnt these things again, then had heart surgery, and once again, he lost them. She told me it's not uncommon for a child with Matt's regressive form of autism to regress time and time again in their life.

Matt is doing so well, and I love it. I love his reading, his knowledge and fascination with numbers and letters, etc. But most of all I love his new-found interest in communicating, and his signing beginning to emerge once more.

However I feel like I have to numb my excitement and joy, because all the stuff that happened before MAY happen again. I loved Matt and who he was SO much before his autism, and it was so hard the way he changed. Now I see that personality once again emerging, and his love of cuddles and his wanted to communicate and have attention, it's great. But I have to stop myself getting too excited.

So, I guess, I'm kind of asking for help. In one way, I just want to celebrate his successes and love Matt's emerging personality and fully embrace it. At the same time I feel I have to hold back so I can avoid being hurt so much as it did last time it happened. (Just have to say here I love Matt regardless of what he can or can't do - it's just so nice to be able to have a bit more of a relationship with him again.)

Do I sound confused? Hmmm, maybe I am!!!

x

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

PJ's Mommy · Posted: January 10 2009, 10:16 PM Post subject:

Helen, not having any experience with autism, I'm certainly not the one to offer any advice, but am sending ((hugs)). I think it's appropriate to celebrate every milestone, regardless of how many times he achieves it! I can't imagine holding back they joy you feel for Matt coming 'round, imagine if he felt you WERE holding back? Just my 2 cents, if that.

_________________
Kathy, wife of Daniel since 2001, and mother of Danyse 4/85, Rebecca 9/96, and PJ (DS) 9/12/07
(seems I have a baby every 11 years)

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LinMac · Posted: January 11 2009, 3:43 AM Post subject:

Quote:

Do I sound confused? Hmmm, maybe I am!!!

You sound normal to me Helen! Very very normal.
You're trying to negociate 'new ground' with Matt.
First with the DS, then he is high functioning, then he regresses and you get an Autism diagnosis, and now you see him making wonderful progress again.
Can he regress back again? I don't know! But I do know that you have managed 'new ground' before with Matt and you'll do it again, if you have to!

I'm afraid I have no direct knowledge of Autism. But your question is very specific so I'm sure you'll get some answers.
Its wonderful that Matt is making progress. Its also wonderful that you have hope right now....Hold on to that hope Helen.....and live in the moment with Matt.
Love to you my Friend.

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

ecki · Posted: January 11 2009, 1:16 PM Post subject:

Y'know, all I can say is celebrate today and don't worry about tomorrow.

Be excited for all that Matt does now. It's normal to have those fears of "what if?" but no one knows but God, right?

_________________
Ecki

MomMom of Kayla (Ds/Autism 4/5/04) and Laurie (PDD-NOS 7/12/01)

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pookeymom · Posted: January 11 2009, 1:23 PM Post subject:

my heart sank a little bit when I first started reading your post as I know you were just bragging about how well Matt has been doing. I think that you should celebrate today and not worry about tomorrow. I certainly know disappointment about regression, but when my boys start something new I really try not to think that we may lose this.

I am going to make a point to ask my boys TSS (autism teacher) her thoughts on your post and ask her if this is something that can occur whenever and at any age with our guys. I'm certainly interested in hearing what she has to say. I don't know as much about Autism as I do Down Syndrome as I've chosen to take on the Down Syndrome diagnosis and take the PDD as it comes. Each child is so different and what I may read in one book or hear from one parent may not be the case for me so I kinda shelter myself from the worry. Do you know what I mean? Instead of worrying about it I would rather just wait and see....

The constant changing of stims is what gets me. One week we can be chewing on anything rubbery in the house, next week we're twirling anything and every circle we can find, now this week Caleb has an infatuation with his sippy cup, he holds it, shakes it,hums to it, rubs in on his forehead, and doesn't drink from it. Kinda weird...

But I will reply to this again after I've talked to teacher....if you dont mind.

Great question and sorry my reply turned into a book about my boys. Smile

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Stacy, Mom to Tristin 12, Camille 8, Elijah 6, Caleb and Isaac 4

pookeymom · Posted: January 12 2009, 1:41 PM Post subject:

Helen,

TSS said the great thing about the story that replays in your mind about that other child who lost his abilities several times is that he could then rebuild them. That is a great progress and something that some children do not have the skill to do. So if your child regresses, as they will, the great thing is that they still come back. One reason for regression is transitions.

So the big key to minimizing the impact of large transitions, such as surgery, is to focus on transitions during daily routines. Prepare for things before they occur, expose them to situations they dont prefer by using systematic desensitization to unwanted activities. These are things she does with my boys all the time. As a matter of fact as I'm typing Caleb wants a cheese curl, he doesnt want a Sunflower chip, so she offers him 2 cheese curls and when he's done he has to eat a small piece of the chip before he's allowed another cheese curl. She shows him the cheese curl and tells him that once he eats the chip he can have the cheese curls again. She said its building trust and its showing him that there are other things to eat in case we're out and have no cheese curls.

I hope this makes some sense to you and that it may have answered your question a bit.

Give Matt a squeeze for me Smile

_________________

Stacy, Mom to Tristin 12, Camille 8, Elijah 6, Caleb and Isaac 4

Helen · Posted: January 12 2009, 6:35 PM Post subject:

Mmm, think I understand! I'll read it again in the morning. My fault for reading last thing at night before bed! Lol. But thanks, really appreciate you asking her and getting some info, x

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

samantha's mom · Posted: January 12 2009, 10:22 PM Post subject: Just wanted to say

Helen,

I do not know if you remember me or not, but my Samantha also has a dual dx of Ds/ASD. What the professionals told me is that when she regresses it normally means she is developing another skill and the skill she has regressed will come back. I know all too well that feeling and just wanted you to know that.

Elizabeth

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Elizabeth & Samantha Nicole

KatieB · Posted: January 13 2009, 10:02 AM Post subject:

Try to see Matts accomplishments that he does today. Our kids put so much effort into what they do, and when it's a step back it hurts, becasue we love them so much and want them to thrive and thrive, and not lose what they have gained. I try not to think about the "what if's", and just enjoy what my Matt has done today.
Katie

Helen · Posted: January 13 2009, 11:01 AM Post subject:

I guess that's the only way, I suppose. Besides I'm doing a prett crap job at not celebrating his successes and I'm really excited how well he's doing! So I'll just enjoy it!

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

LinMac · Posted: January 13 2009, 6:01 PM Post subject:

Helen
Wooh! That's a very interesting point that Samantha makes about the regession.
Perhaps the regression phase will be marked by phases where he requires new skills! It would be worth seeing if this pattern is emerging with Matt.
That said you'd need a few regression phases.....but you don't want to go there right now Helen.
If nothing else it might help you understand why he regresses and to understand its not a full stop in his development but rather a resting period.

I find that explination amazing!! I find if I can understand the 'why' of something it makes it easier to accept it! What Samantha said fills in the 'why' for me! Does that make sense Helen?

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

Helen · Posted: January 13 2009, 7:26 PM Post subject:

It makes sense. But, for example, with Matt's signing, he regressed. He didn's sign at all for over 1 year, then started signing using our hands, and now he's started signing alone again after regressing almost 3 years ago.

What did he learn in those 3 years?

I know all our kids stall while they learn something else, but regressing? The lad I was talking about in the initial post had to compeltely relearn the alphabet and start right from scratch three times with reading. And what was he learning during that time?

3 years is a long time. This lad initially regressed at 4, then again around 11, and then at 16 - and I mean big regression.

I guess it's just a worry to me. Thanks for all your answers guys, x

PS - Of course I remember you Elizabeth! It's been ages. How is your gorgeous Samantha doing now?

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

Tom · Posted: January 14 2009, 9:28 AM Post subject:

Subsequent regression is pretty rare. Most kids with autism go through a regression early and then slowly develop skills from there. Mikey has been slowly but steadily developing skills and we have not seen him lose any that he developed since his diagnosis. We have seen behavioral changes but no loss of skills.

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Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
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moody216 · Posted: January 14 2009, 1:45 PM Post subject:

We see Nick regress but only behaviors not things he learned. For instance, he will start feeding himself nicely and not throwing food. Then he gets sick or in the hospital and afterwards is back to refusing to feed himself and throwing it.

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Jen (mom to Nick, 6 with DS and Joey, 3)
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momofrussell · Posted: January 17 2009, 7:09 PM Post subject:

Well, for whatever reason, we sometimes learn things but for the most part, we learn stuff then they drop off, we may not see them again, regression is common still for Russell. After so many years of the "disconnect" we see we are use to it Wink

It's funny, when we started with our new district a few years ago I was explaining this part of Russell. There were things he had learned but then everytime we learn something new, he looses the other stuff. We had multiple placements and teachers over the years that sometimes I wished that was it, but to be honest, it always wasn't. We also never knew if he knew it and didn't care about it anymore or there was a true disconnect. To me there was a disconnect and from what our devel ped told me, that is common.

So, the first IEP meeting with the new school district 2 plus years ago, we talk about this. Then they set up goals and Russell learns them so they build on them... and try to move farther along. I was not too thrilled and kept reminding them about WHO Russell is/was... and not really knowing Russell nor I, stared at me like I had two heads and didn't know my son!!!

Welllllllll fast forward to recently... teacher is bringing this all up!! She DOES see that there are things Russell use to do that he doesn't do anymore....(didn't I mention to them I knew Russell?) Now, we still can't figure out if it's lazy boy syndrome or this true disconnect or both... I am going to bet the farm it's both because I have been observing my boy for 10 years Wink

You can tell there are times he just doesn't know the "answer" anymore and he use to. Other times, he doesn't give a hoot... (when lazy boy syndrome kicks in LOL).

Also, I remember one time he was out sick for a week, a few years ago. He regressed BIG time in that week he was gone....

So, for us it happens all the time.... this is why we are on a merry go round......

I don't mean to sound depressing or whatever.....there is PLENTY CAN do and has been doing constantly!......and even if it's for a few months or few years, I relish the things he does...even if it does go away later.....

A.

_________________
Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 10.

DSAGSL 2009 Buddy Walk

Helen · Posted: January 17 2009, 9:00 PM Post subject:

Thanks Adrienne. I know I shouldn't be negative, but that's the kind of thing I'm expecting with Matt - that it will be stop, go, stop, rewind, go, etc all the way with him.
It sounds like that's what you've had with Russell all the way, even though his autism isn't regressive.

So I guess tbh, to predict or worry about the future is futile ... Hmmm

_________________
Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

momofrussell · Posted: January 17 2009, 9:20 PM Post subject:

yep... futile.

That's why Russell is my enigma.... there are things he can do I never dreamed he could do, like follow 1 step directions or pay attention to us even for a moment.... but other simple things he can't do anymore, like point at his nose....it seems so silly but sometimes I fixate on this. It took him years to do the "where's your nose" game... then, one day it stopped and he hasn't pointed to his nose again if we say "where is your nose". It's like it's gone... or he doesn't care... either way.... he doesn't do it anymore "on command".

Now that I think of it, that's part of the disconnect. If we ask him things he has a hard time connecting and remembering or WANTING to do it. Recently his new thing is if we say "what do you need" when he needs help, he can answer with the sign "HELP".. which is a GREAT task for him... but other things like "where is your nose" or "what do you want" when he just handed me food, he can't answer anymore. He use to answer by signing "EAT"... but he can't do that anymore either. Sometimes he just stands there, then other times he blinks and grimmaces (this is how I know he truly CAN'T answer me, the disconnect thing).

BUT.... if he can't answer and then we show him or prompt him, THEN he can do it again... but recall things? That's where the big hiccup is. So, I don't know if it's truly regression or Russell's brain is misfiring in such a way that recalling and answering is a stuggle even though it's in there. You'd have to see him in action to understand...it's truly like it's all stuck! Then other times he stands in front of you blank..... like he doesn't know or regressed with it........ or is it lazy? LOL

Yep... futile!!!

A.

_________________
Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 10.

DSAGSL 2009 Buddy Walk

Helen · Posted: January 17 2009, 9:33 PM Post subject:

We have to meet you guys! Russell sounds like one amazing/interesting/enigma kind of guy. Next time we visit US!! .... Question

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Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!