Hey. I hope most of you know me, cos I may be a moderator, but I need help! Basically, it's this ...

How do you, as mum/dad, emotionally cope with your child's regressions? Cos I don't cope well and need help! Matt is 9 1/2... 7 years ago he was sociable, out-going, talking, signing, playing, toilet-trained, excelling and keeping up with his 'typical' peers. Then autism... But he progressed and when he was 6 or 7, he was again keeping up with his peers academically, though not socially, but though a little fussy with food, he joined in, he took part in stuff, he was happy... The years since then have just been a downward slide. He can't do half what he could before in terms of academic stuff. His behaviour is hard, he runs away, he poos himself, he self-harms, he eats just 3 foods, he's unpredictable, he crashes all his toys and breaks them and door frames, etc, he cut and broke my nose a week or so ago. TBH, horrible as it sounds, he feels like a burden and I find it hard to enjoy him as I watch him regress more and more... We've asked the paediatrician for help, the OT, the ed psych. But they all say its behavioural. He had to leave his old mainstream school and now goes to special school but he's getting worse. He's now re-learning how to write single letters - when he used to write and spell out sentences. I find it all so frustrating. And gutting, if I'm honest. I hate it. I'm scared for the future, though I've never been before...So how do you guys handle this stuff? I don't want to feel low and down. I want to find positives and focus on them. But I'm struggling. Help? :-/

_________________
Helen

Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!

Helen,
My heart goes out to you. You are asking for help and the professionals around you are just giving you a quick answer (it seems) and sending you on your way. I am so sorry because I know how hard you have tried to look on the positive side throughout your son's regression. It just sucks. I wish a whole group of us from this site could be your neighbor and just give you the break that you so need.
Does Matt qualify for respite care? If not, can you fight for this?
I hope that other posters can really answer the questions you are asking. You are being thought of...
Hugs to you, Helen.
˜Lauri

_________________

It is hard, I know because my Matthew has much in common with your Matt. They are even the same age. Except we don't deal with regression...he is just very slow to progress. You could try to focus on the bright side of regression...at least he made that progress and had those skills for a while...some of us haven't got to experience those skills at all.

All I can do is sympathize. Dealing with behavior issues is the worst. And progress is always so slow. Matthew is on tenex, and that helps some.

Back in May he escaped out a 2nd story window and spent the summer in the hospital. He has recovered and is back at baseline. It has been a real miracle, but when people are all excited that he is back to "normal" I find it hard to really appreciate it because his "normal" is not all that great of a place to be.

It is often hard to relate to people on this board because I say that if you couldn't see the ds in Matthews face, you would never guess that he has ds.

I guess none of this is particularly helpful for you, but I just wanted to let you know I understand many of your feelings because I am there, too.

_________________
Heather
Matthew 5-21-03 DS, PDD-NOS and Ryan 2-14-01

Can you call Dr. Capone at Kennedy Kreiger or even bring Matthew to see him? (I know that you are in England and this may not be possible.) I know he specializes in DS with autism and Tom and Leah have both had great success using him.

I feel like I have known Matthew forever and I am heartbroken for you.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]
[img]
[IMG]

I was going to suggest Dr. Capone too. Even if you couldn't come here for an appointment, I've heard he's willing to consult with other doctors. Perhaps one of Matthew's doctors would be willing to speak with Dr. Capone on the phone?

I don't know any quick answers.
Sending hugs.

Kim

_________________

Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)

So sorry that you are going through this Helen. I don't get how his paed can just write it off as behavioural b/c even 'behavioural' stuff needs intervention and sometimes medication. Give yourself a huge hug....be kind and patient with yourself. Sounds like you are going through hell Sending you masses of cyber hugs, prayers and positive thoughts <3 Keep us posted.

I just finished reading your post about the awesome experience Matt had at summer camp - it's probably not fresh in your mind right now as you deal with the disappointments and stress of daily life. There will be good days in the future too. Hang in there.

I just came back from a parent training on Autism Resiliency. They said that when levels of stress hormones were measured in a variety demographic groups, mothers of children with autism fell in with combat soldiers and holocaust survivors. So feel free to vent when you need to and take care of yourself!

_________________
PJ's Mom

Oh Helen....ever since I joined this site I have always seen in you just awesome things, always admired how level headed you seemed, and how positive and encouraging you were despite Matt's issues. I am so relieved and glad that you, too, are human!!
I feel awful for what you are going through and cannot imagine your pain and frustration. I pray that you and Matt will get the help you need quickly and that his behaviors improve.
Sending hugs over the ocean.

I have an Autistic Son- and Regression is the most frustrating part of his Dx for me as well.

While it is NOT the same as Ds+Autism, I have empathy for you and I know what it is like to watch your son be able to do something- even be ahead in a skill- and watch it vanish for no reason at all.

I am often left with a feeling of defeat when my 9y/o son has poo in his pants (Not skids-poo) or I find the hoard of poop balls behind the dresser because... well... that was I guess preferable to wiping his butt.
Or He talks to people about Pokemon (a animated show/card game) and they have either said they don't know anything about it, or they are trying to talk about something else and he ignores the redirection.
I also understand about the self harming. (Sometimes, over literally nothing.)

But your post has done one thing- it makes me thankful.
We have been going through A LOT with him behavior-wise, and none of my friends deal with anything like this; and really do not understand that this is NOT a discipline issue. I have a constant fear for him in the future.

Sorry if this was a thread-jack, HUGS to you!!

_________________
Monica, Mom to Ayden (Aspergers) (2/03), Zavien(12/04) and Jackson DS (12/10)

Helen, has all the change with the new school triggered his regression?
How is the new school going for him? Do they have access to specialists who could help? Even doctors that you could consider going to privately?

The medical system here is pretty poor, under funded, long waiting lists, etc. If you want to go private you'd see a doctor next week!!!! Man its madening....but sometime needs must!

My neice has PDP-NOS, Selective mutism and OCD. My sister had to get a private assessment with a psycharist (sp) and she's on meds.
After a pyschotic episode over four days this doctor took charge of my nieces ongoing medical care.
There must be doctors in the UK that would try medications for Matt.

BTW....the doctor that treats my niece is English and has settled here.
I know she charges about 350 euro for an assessement and around 120 euro for subsequent visits.
Just mentioned this so you have a guide for the costs involved privately.

I know you got some counselling help for yourself a few years ago. Could you get a few more sessions....the thinking being you can't change the Austims but you can change yourself!

I wish there was more I could do for you! I wish we lived closer to give you more practical support.....like make you a cupa, give you a day off to do your own thing!
I had a few hours shopping for a dress for a wedding last week, all to myself, and things seem so much easier on my return!

Things are very quite on Downsyn these last few months. Wondered where are Tom and Jeff, and Amy and loads more members who used to hang out here.
I think everyone is on 'bookface'! LOL!

I hope you get more advice Helen!

_________________
Linda & John
mom to Hannah Kate (Age 13 ), Robert (Aged 8 - DS)


First day at school

Thanks to everyone for replying!

LOL, yeah, I definitely am human! Good days and bad days!

Don't worry about thread-jacking. It's good to know (in a bad kind of way) that I'm not alone, and someone totally understands the frustration.

I never thought of myself as having the same level of stress as a soldier, though I probably do feel it from time to time.

Someone else said to me to get counselling, but I really don't think it will help. It's watching my child deteriorate that I find hard, and handling my emotions when he does make progress. I want to get excited and I feel so happy when he strides forward, but it kills me when I have to watch all that progress disappear. I can't disconnect and not care. I'm trying just to accept it does hurt, and always will, but I can't not celebrate his achievements even if they only last a short while. And, for me, I've always had a son who's excelled in something. Early on it was speech and signs and sociability, with Autism it was jigsaw puzzles and his knack of doing pretty complex ones at 3 years, then it was the fact that he was only just behind average for reading, writing, maths etc when he was 6 or 7... Now, he's lost all those skills and I'm having to learn to accept my child is just very, very delayed, and though when he joined his special school for kids with severe to profound disabilities I didn't think he 'fitted' there, now I'm having to accept that he very much does fit there, and it's me living in the past and under the delusion that he's still where he was developmentally a few years back. And he just isn't.

As before, it's all about acceptance. I guess it's just not a quick and easy thing to do.

Anyway, as for Facebook, you're probably right. I'm on both, but I still love it here. I know Tom was badly affected by the hurricane and only just got his power and electric restored this week, after 12 days or something. I haven't seen Jeff post for a while on FB. Amy liked one of my pictures though, so they're still around - just in the 'wrong' place!

I'm

_________________
Helen

Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!

I know my Ethan, who just turned 10 has been going through some really hard times all of a sudden the past few months. It is so hard to not know what is going on or try to help. Sometimes I just cry. His behaviors of yelling, plopping down and hitting himself or banging his head have all escalated. Sometimes he is so emotional and just starts sobbing.

Does Matt communicate? I am thinking for Ethan part of it is he can't get his basic needs or wants across, and we are working on trying to get a new aug com device, although who knows if that will work. Another one of his teachers mentioned to me that alot of this behavior will come around puberty also, with all the hormones and emotions they are going through. I don't even like to think about that, and they are still pretty young, but sometimes you never know.

I know how you feel about it sometimes feeling like a burden, the bigger Ethan gets and the days his behaviors are so bad I feel that exact same way, worn out to the bone emotionally and physically. Its a rocky road with lots of ups and downs, I hope you have some more "up's" soon.

_________________
Carrie- mom to Olivia, Ethan (8 y/o with DS/ASD)and Cole 10/17/08

Sending you hugs, Helen. Melly is on the spectrum, too, but she doesn't deal with aggression issues. I am so sorry you and Matt have to go through this. I wish these doctors could see that they are doing more harm by NOT treating Matthew.

You've been given a bigger blow with this diagnosis, because you can see how much it has robbed Matthew of who he is. I can't even imagine what you have gone through, watching your intelligent little boy lose all of his hard earned skills. Not only that, but the doctors are not helping you and Matt with this.

I wish there was more I could say to make you feel better. I do think that what you are feeling is normal. I do believe you LOVE your little boy. You can love your boy while not loving the diagnosis. I don't like Autism. I don't embrace it. I just deal with it, but I don't have to like it. But, I LOVE Melissa.

Sending you more hugs.

Michelle

I'm still here!
Just in your same boat Helen. Not a lot to say. I feel frustrated for you because I KNOW behavioral meds could help your son. It made a world of difference for Austin. I have found that Austin regresses when there is something physically going on with him.. fluid on his ears, constipation, Sinus infection or insomnia. He can be very single minded. Once he feels good, then he does well at school. I don't know that he's EVER going to be social.

We just had a dismal heart appointment for Austin. And I think it put it in perspective for me. As odd as my little guy is... I'm going to enjoy who he is and stop fighting the whys... I can only love him as he is now and let him progress at his own speed. I am looking into alternative behavioral therapies for him. But after today, I guess I realized just how fragile and short life is. When I saw his enlarged right atrium on the ultrasound. I knew... I didn't need a Dr to tell me what I was looking at. Another open heart surgery. We are waiting 6 months.. watching and praying we don't have to open his chest again.
((((HUGS)))) Life is hard. It's hard to watch your child struggle. But you have to focus on the good moments and take the good with the bad. And hold tight, my sister in Faith, in Romans 8:28.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

Helen - I too feel like I "know" you after having spent years on this board with you. I remember when Matthew was doing so well AND I remember when things turned and you got the autism diagnosis.

Something that occurred to me as some of you are experiencing the same thing with boys the same ages. Have you considered they might be entering puberty and the hormone changes might be affecting their behavior? When I had Grady at the Endo. a couple months ago the Dr. asked me if I'd been seeing any signs of puberty yet (I haven't). I asked her when I should expect it, since I knew it came early for our kids. And WHAT exactly to expect. She told me that at age 9, if it happens, they are "ok" with it. They don't consider it early. And one of the early signs of entering puberty is attitude and behavior changes.

Anyway, just a thought. Probably not much to be done if it is puberty. But something to consider none the less.

And Amy - my heart breaks for you and Austin. So scary to be facing another huge surgery. I'll be praying for you all.

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Evan 7/27/10

Thanks guys. All of you!

Amy, gutted for you. So not the news you want to hear, especially when he probably appeared absolutely fine. Will be praying!

We went to school parents evening last night, and Matt has slipped back further. Whereas, at 7 he was less than a year behind his age academically, now - at 9 1/2 years - the teacher tells us (on the evidence he's seen) Matt is working at a 3 or 4 year old level. It's just soul-destroying.

And what annoys me most is that the professionals just blame it on one thing or another, and never actually bother to look into it. If a 'typical' kid regressed this much academically, they'd do every test under the sun to find out why, not just put it down to a bad year, or stress, or whatever. To lose so many skills is horrible and I hate it, with a passion.

I've got to the point of thinking no-one is willing to take Matt's disabilities seriously. I know Matt's diet is awful, and so restrictive - just 3 things - and because of that he must be lacking in nutrients which, in turn, could be partly why he's not doing so well, but food is such a stress for him, and causes him so much distress that until he's on a totally even keel and not self-harming or feeling anxious, it's not something we can tackle, cos he'll get too anxious to even contemplate new foods (even if they used to be part of his regular diet). And they won't give him meds to keep him on an even keel, so it's a catch 22, vicious circle.

Anyway, I've been looking into why Matt had such a huge, dramatic regression at 3 years old, and why I've not met anyone with a regression similar. And I think we may have 'discovered' what Matt may have...

http://www.patient.co.uk/doctor/Heller's-Syndrome.htm

http://www.minddisorders.com/Br-Del/Childhood-disintegrative-disorder.html

The prognosis isn't good, and nowhere seems to have any documented evidence of how a child progresses after their initial regression, and whether further extreme regressions are normal. But it seems so Matt, at least a few years back. I know Matt will never regain his social skills, but watching him losing his academic ones - the one thing he was really good at - is horrible. And sometimes I wish he'd never done these things, rather than me constantly yearning for something he lost and may never get back.

Oh well. It just adds a whole new dimension to life. DS is such a non-issue!

_________________
Helen

Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!

Oh, and as for puberty, I'm pretty sure we're not there yet. Matt is 118cm tall and weighs 43lbs. He's just grown into 5-6 year old clothes. He's 9% on the DS charts for height, and 2% for weight. He's still not lost a single tooth! And he's very much still a little boy physically. I can't see him ever growing, but hey! I can't imagine puberty coming, but I know it will be here soon enough. But I'd be amazed if we could attribute any of Matt's issues to that - at the moment!

_________________
Helen

Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!

The onset of puberty is a good theory to consider in terms of his most recent regression. The actual hormonal changes are going on months before physical changes are noticeable to to the naked eye. Axel started noticeable puberty changes almost as soon as we got him (he had just turned 10) which means the hormonal changes were happening well before that. Now at 12 he is in full-blown puberty.

Asher just turned 8 and while he is physically still so much a baby, there are tiny changes happening. Based on the other boys I've raised I expect we'll be seeing dramatic changes over the next 12-18 months. I hate that when he is developmentally 2!

The tanner scale is really helpful
http://www.fathermag.com/health/puberty/timing/tanner/boys/

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Helen - Grady seems to be the same at Matt physically. Same size and has not lost a single tooth. Still very much a toddler body.

_________________
~Kathy
Grady (DS 5/26/04)
Hailey 9/20/06
Evan 7/27/10

Austin is huge! He is only 3 inches taller than MAtt & Grady, but he wieghs 70 pounds. He looks stocky! He has lost several teeth and has permanent ones coming in... He is actually blends physically in with the other second graders. Just his behavior singles him out!

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

We had some behavioral problems lately...now i am wandering if this is the hormones acting up...i thought it was too early..he is 7, he did spiked in height lately ( 119 cm ) and lost 4 teeth and got permanent ones....i read the sings of stages of puberty...we dont really have any...except occasional erection mostly when he is taking a bath ( but i wouldn't see any other times...) . And he is like a toddler. But now i am wandering if physically ,there are any changes happening to him...ok, now i am freaking out...

_________________


Oksana, mom to Andrew (17/07/2005) DS

7 is too early. And FYI, little boys, including babies, get erections on occasion throughout the day.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

I tired to post on this thread last night but had problems!

Amy I sorry to read that Austin may need more heart surgery! Very scary stuff!
Your post is a timely reminder for me to meet Robert where he is at and not where I'd like him to be! And most of all to enjoy life with him!
I understand that you are taking a wait and see with the heart problem....will you keep us posted.

Robert will be 9 in April. We're having mood/ behavior stuff right now. Shouting, banging doors, emotional meltdowns, difficulty with daily task transitions! Man is been a tough few months. I think one of the main causes of the issues is lack of quality sleep and hormones.

John and myself are going to see Behavioral Psychologist who might be able to help us next week. Essentially an assessment and Functional Behavior plan for the home. I'm praying it will help make home life a bit easier for Robert and us!

He now weights 60 lbs, 119cms in height and has lost four teeth.

_________________
Linda & John
mom to Hannah Kate (Age 13 ), Robert (Aged 8 - DS)


First day at school