Hi

We had a review at school yesterday, and it was kind of OK. But pretty depressing I guess. We foudn out a few things about Matt that showed he's continuing to regress.

Whereas he always used to love messy play, now he won't touch messy things - doesn't even like playdough. Sensory-wise, things like that were never a problem, but it appears it's getting more so.

Also, he bit his teacher yesterday, just for the hell of it. And he's started putting everything into his mouth, or licking them. And is fixated with licking his hands and then touching his chin.

They said his obsessive behaviour has got worse. Holes seem to be No 1 on the agenda at all times! He no longer sits nicely at lunch as he's looking for holes/gaps. He won't sit on the toilet for them, so is having accidents every day - they tell me he has no concept of his toilet needs (he's better at home, but he's getting worse!)

He used to know many of his phonics (letter sounds and signs), but we did them last night. He used to sign and say about 15 of them (about 6wks ago), now he appears to only remember 2.

I've accepted that he has a dual diagnosis (although it's not confirmed yet) but how much more will he regress? Is he going to lose all his skills, and just go back to being a baby/toddler having to wear nappies again, mouthing everything, climbing all the time, etc?

It's hard enough seeing the regression thus far, without thinking there's more to come.

He was in a show at church last Saturday, and it was so sad to watch him. Last Christmas he was also in a show, where he stood independently at the front and signed all the actions to some Christmas songs, and a load of nursery rhymes - and I was SO proud of him. (Here's what I posted at the time .....

Yesterday, we had a Christmas party for all the little children in the area. And at the end all of them went up on stage to sing some songs - Matt too. I was so proud as he stood there with the others as they sang, confidently signing and doing the actions to the songs. He looked so small but did it perfectly - and got the biggest clap as a result!

However, fast forward less than a year ..... This time, he stood there with a helper, and just gazed into space, and licked his hands. Talk about a completely different kid.

Anyway, there's no point getting down - alhtough it's very easy!!! I know no-one will be able to give me a definitive answer, but anyone got any ideas?

Thanks

I'm so sorry for what your going through right now. I have no information, but looked at this thread because I've been wondering how Matt was doing. I think your story about the Christmas show was touching. I remember when I first had Sadie and the topic of knowing a diagnosis and knowing something was wrong but not having a diagnosis would come up in parent support group. Of course for me, knowing that diagnosis and not being able to change it was heartbreaking. But as I read through your journey... I am full of sadness for your uncertainty and frustration. Good luck. I wish I could say this is only a stage.. but I have no knowledge of what you are going through. My prayers are with you.

(((((Helen)))))

I can't help with advice but just wanted to offer my sympathy and support. I can't imagine what you must be going through. Did Jackie have any ideas or thoughts when you saw her at the speech therapy?

It does sound like a really fast regression to me, and nothing like what happened to my nephews who are on the autistic spectrum. Their symptoms gradually emerged and there was no regression at all. When are you seeing the ed psych again?

Sarah

Oh Helen I'm sorry, I just want to give you the biggest supportive hug a friend can give. You know I'm going through the same as you and Matt. Katie's obsessiveness gets worse also, First she was just flipping anything, such as a napkin, toiletpaper, cloth diaper. now she squints her eyes over and over, she takes her hands and like the motion of a duck quacking with the movement of her fingers she does it over and over. People I have told about Katie's Autism, their answer is thats o.k. Well its not o'k' she's my baby D.s is enough damit. But as you have told me hang in there be positive and I will fight for everything I feel my Katie needs. We have a school board meeting in Dec. Her dev. dr. wants a sedated hearing test done and a sedated visual test also. So a whole new round of Drs. and test. But I have good news Katie was dismissed from her Neurologist no more seizures no more meds.!!!!!!!Hang in there friend we'll get through this.....

I so know what you mean Nancy, when people say, 'Its OK'. It's not OK, and I don't think it ever will feel its OK. I don't want Matt like this, I don't like Matt so much like this, and though I never questioned God why Matt had DS, you can bet I have a hell of a lot of questions now. Why let a little boy come on so well, be doing as well as his non-DS peers and better in some areas, just to lose so much and become this other little boy? It makes no sense. But ultimately, we're never going to get the answers, just have to learn to accept it. But that acceptance is a very hard thing!!!

Oh Helen, I don't have the right words for you, I want to say something, and so.... I could only think that God trusted in you to take care of a boy like Matt 1st by seeing a dramatic change and wanting to FIND ANSWERS and then 2nd fighting for him and others with the same issue. God knows you can do and WILL! You know how Matt was, you know this is happening FAST and you need ANSWERS! Maybe this road God has put you on now will help so many people beyond Downsyn. I know it is not OK and you want him to be better, I do too. All I can say is keep the faith, fight the good fight and one day Matt might be able to reward you with a hug and an I LOVE YOU MOMMY!
My heart breaks for you and Matt. And I am praying for answers.
HUGS to you!

Has he seen the Hearing Doc? Has things been ruled out yet? I am always thinking about you guys.

Helen,

I don't have any words other then to let you know that I think of you often and pray for you. I am so sad for what you have to go through. I read to keep up to date on Matt and I keep hoping there is a turn around. I asked Larkin's therapist about him and all of them told me that there usually is a turn around and they begin to learn again. They just have to figure out how to reach him.

Love to you with big big virtual hugs and thoughts.

Thanks you guys.

Yes Matt's seen a hearing doctor, and he's got his hearing aid. It obviously does make some difference because Matt is happy to wear it when it's switched off, but as soon as it's switched on, he hates it.

But no grommets (tubes) for the time being. To be honest, the way he is now, I think it'd just freak him out, and he'd go more wierd. He can't cope with the clearer louder sounds he gets from the hearing aid, and grommets would do the same.

For the moment, I guess, we just focus on other things. School have set up a reward system so that if he chooses something from a choice of adult-chosen activities and does it, then he can choose something he wants to do from his 'special box'. His favourite chosen reward is an empty pen tub which he can rub his fingers against the grooves inside!!! But at least things are moving forward, and the school is trying to help him move on.

Today he's had a very obsessed day, with most of his day spent feeling things with his hands - grooves in chairs, squishing his hand under the rug, finding any hole imaginable, and humming/groaning continually. Hate seeing him like that, but I'm aware that's more who we're going to see as time goes on. It's just so frustrating, and for the first time in my life, I feel I have no control as this bloody ASD takes over.

GRRRRR!

Helen, my heart has just been aching for you these last few months as you've talked about Matt's regression. I've watched Angela make regressions in behavior, and those tear me apart, I can only begin to imagine how you must feel watching Matt slide backwards. We're here for you, and praying for him to hit some swich somewhere and bounce back into making progress again. Somehow, someday, something will turn around. Hang in there Helen. We all wish there were something we could say or do to make everything better.

I've been thinking about Matt....a lot. How are his motor skills? Are they regressing too?

Hi Shea. Thanks for thinking of us. It is tough, but I guess it's becoming 'normal' now, and we just take one day at a time. And I've learnt not to 'torture' myself watching old videos of him!!!

Anyway ...

No his gross motor skills are still coming on fine. He's still doing lots of climbing, running, etc. Fine motor skills have always been his weakest point, but he hasn't regressed there either, particularly. I guess I see less evidence of his fine motor skills now, as he refuses to feed himself, or draw a picture, etc.

It just seems to be the social and language skills that are going. But there have been a couple of improvements - he now comes to the window every day, with a lot of cajoling from the other kids to say goodbye to me when I leave him at nursery. He doesn't wave or say anything, but he does smile and sometimes bang on the window, which is lovely, and makes my heart melt!

And he signed 4 of his Wiggles signs yesterday out of the blue. So I know it's all in there - it's just a matter of how to bring it back out again.

Hi Helen, You sound good, I'm glad Matt is making progress. Like you said you know it's in there. Happy Holidays to you and your family.

Helen I am at a loss for words. It's like this cannot be happening and WHY? I am just floored at this news. I still have stuck in my memory all of the things that Matt was doing and I always thought that he was one of the few that could do so many things way ahead of the others. I know there are a few other children with Ds/Austim diagnosis, but it seemed so gradual, this seems like it's happening so much faster. It must be so confusing and frustrating for you. We will keep your family in our prayers and pray that things settle down a bit.

I know. It's horrible that it's happened so quickly. If only I'd known this could happen, I would have spent my life videoing all those precious moments. Like when he used to sign along to his nursery rhymes or Christmas songs, or something as simple as when he looked at me and waved, or said Bye Mummy. But, I guess you just think that once a child's got a skill, it's there to stay.

Having read up on Dual Diagnosis, I found out it can manifest itself in 2 ways - either that the child is, from the start, slower to learn things, and shows some obsessive behaviour, lack of social interaction, or often sensory issues, early on which just becomes more apparent as time goes on. OR they can develop completely 'normally' then just start regressing, losing skills, start obsessive behaviour, etc. And this typically happens around 2-5 years of age and can be quite a rapid regression.

It's scary.

And the sad thing is I can no longer get excited about our other younger kids (downsyn kids) achievements, as you don't know who it could happen to. There was nothing apparent with Matt early on, and everyone used to say what a sociable little guy he was. At 2 he scored at 3 1/2 yr old level for social skills! Now, at 3 1/2, he's regressed to 18mth level!

It just makes zero sense to me.

But at least I've got those memories of how Matt used to be. And I've still got a little Matt to love and enjoy in a different way. And I believe one day he will relearn some of his skills, and new ones too. OK, this time they won't come naturally to him and they will have to be 'learnt' but he can't stay like this forever. With the right help, I have to believe, we'll get Matt back .... somehow.

(Can you tell I'm on a positive day today!!!)

Helen have BIBIC got in touch with you, the sooner you see them the better, I know that December is a busy month for you but if you could see them before christmas you will have things to work on before christmas and it will give you something different to focus on other than the regression ( which can totally take over your thoughts, as this is what happened with me and Hannah, - all I saw was the regression )

The nutritionalist was very good at BIBIC she said that sometimes autism can be bought on by allergy and diet so she gave me lots of things to give Hannah and things to cut out too which I can see a little bit of a difference in her. Today we went to a swimming party and as i was saying "quick quick " to her as we were trying to change her quickly she repeated it after me

I have noticed since seeing Jackie and going to BIBIC that Hannah has done alot more imitating of sounds which has really encouraged me. Before I used to see others immitating sounds and Hannah would never do that but now she does sometimes which is an improvement to me

also BIBIC will give you an overall of where Matt is progressively which I think will help you too

Hannah for instance ( yes it was depressing ) in some areas hadn't even progressed more than the 3-6mth stage but at least I know what it was and I can work on that. We didn't progress past 2years on the top area

Please try and make it to see Jackie this Thursday. Its the last Thursday before christmas break and she is taking a break in January so it will be February before you can see her again

Seriously she is really concerned for Matt and she really wants to help Matt and you all she can.

You can stay for tea if it helps and feed Matt before he goes and bring his pyjamas ( I can let you have some of Hannah's again ) so you are all set for bed when you get back, hey or you can stay as it is our housegroup that night and I am having it here as Mark isn't around!!!

Hope you can make it and I hope I have a car that works by then too, instead of the back breaking courtesy car, which i don't even know if i have that after tomorrow

big hugs

Hey Jo

Cheers. I'm booked in for the January clinic with BIBIC, so that's sorted.

Re Jackie, I'll have to see if Andy can bring Matt down this time. I can't miss PCC again as it's my job, and there are important things we have to discuss. So will let you know on that one. All depends if we can find a baby sitter I guess.

Hope you sort the car soon!

Hey Helen,
I have a friend who has works with autistic children ages 3-5 in an IU classroom here in the states. She has been working with this age group for at least 4 years. She's loves working with kids with autism so she may have some really good insights I asked her if she would be open to answering questions via e-mail . She said that would be fine she'll help in anyway she can. She maybe able to give you some ideas on how to deal with the stim stuff. If your interested Pm or E-mail me and I'll send you her e-mail. .
Good luck on you evaluation on the 14. Your in our thoughts an prayers