Hmmm What to do, What to do.....

[christie]

K, I am not even sure how to word this I just know something is not right with Chris and I am sure (or mostly sure) its nothing to do with DS. I am actually thinking maybe Chris needs therapy, not OT or PT, I mean Therapy like a Shrink and I say that cause I don't know how to spell Phyciologist (sp?) I would hate to think I am overlooking something because I just chalk it up to DS, know what I mean??? But how would that work with his speech delay Hmmmm

Geeez how does one know when something may be an issue due to an issue and not DS

CC AKA up late and thinking toooo much

[Sherri]

Hey Christie,

Was just curious if I'm missing something in your post Is there a particular behavior or something that comes to mind when you think that Chris might need therapy

I also wanted to say that I always read your post with great interest!! I love your words of wisdom & hope that some day it would be possible for my family to meet your family!! Do you happen to know where Oklahoma is, lol ;D

Take care & have a great summer!!
Sherri

[rickismom]

If you think that this is a possibility, get it checked out. I have friends whose nearly non-verbal children (with DS) did very well with play therapy. But not play therapy as a way to improve skills, but done by a trained therapist of emotional problems. Good Luck!
Kudos to you for facing the problem rather than ignoring it.

[christie]

Hmmm SHERRI, its kind of hard to explain, BUT I will try...

When Chris had his tonsils out it was a true nightmare for us Now I have read over and over bout kids hear of all ages that have had them out and did just fine, Hmmmm But Chris OMG he just shut down and would not eat to the point they almost had to put a feeding tube in him K, we got thru that but then just recently he had a gum infection and then a lose tooth and 2 new ones (12 year molars) coming in, that I guess hurt him and again we are going thru the NOOOO eating Its like he gets something in his head, like its gonna hurt and then just shuts down and won't eat Not sure I am sharing this sooo it makes sence I just think Chris has some issues that no other one with DS has had, So I sit here and wonder is it from his DS or just an issue that needs to be dealt with, Hmmmm

Where to start to find out, I have nooo clue

I guess it could be a behavior thing but then again it seems to me when we don't know what is what with our kids with DS we all tend to think first its behavior when it very well might be something else,

If you have a clue what I am saying, you are way better then me LOLOL as at this moment I am not sure what the heck, just that something seems not right

BTW Yes I know where Oklahoma is, some where over the rainbow, RIGHT, LOLOL

CC

[Jackie]

I know where Oklahoma is too...going there soon to spend some time in the North East corner ...Ft Gibson Lake near Waggoner....long old drive from Texas.....anyone on here near there?

What are his issues Christie....? Lots of kids go thru changes as they hit their teens....and you are right...as a parent many of us wonder if psych therapy would help. I will share this.....

Years ago here in Amarillo I went to an ARC meeting and the speaker was a child psychiatrist. He had done part of his residency at the Lubbock State School...so understood lots of the issues surrounding individuals with mental retardation. He said he felt most individuals with mental retardation at some time in their lives experience depression and unlike those of us who do not have MR are unable to express their feelings or even understand why the feel the way they do. He suggested that people who do have MR involve a 'third party' in their lives....someone who is not a parent or a caretaker....who can facilitate expression of these feelings.

This is easier said than done as I found in searching for a competent person to talk with Emily in her teens. I even tried to get someone to facilitate a sort of "Bob Newhart" therapy group for peers her age who had developmental disabilities. I thought it would be wonderful and serve two purposes ....to get together weekly with say....8 others in her situation....first of all to learn to get in touch and recognize their feelings (cuz the DO have them) and secondly have a facilitator who could help them 'tune in' to what is age appropriate and timely.....you know....learning to be a teenager....slang....movies...music....clothing styles....so that as a group they would learn to talk with each other the way other teens talk with friends. I thought it would help them fit in to the mainstream better...

Maybe you could start something like this eventually...I know this is not exactly the issue of not eating...but maybe it is part of something bigger as you seem to be saying

Jackie

[DereksMom]

Could he possibly have an anxiety disorder??

Hugs

Allison

[cindylou]

CC- If you can get some referrals from your ped I would think shrinking him might be good. I know from my viewpoint-when I have a concern (even if it seems silly - or unclear) I stress about it until I can be proactive and do something. I would move forward on it just so you can feel that you're looking into some answers for him. If nothing comes of it - at least you'll have more peace of mind knowing that you looked into it. When you joke around with him and play--does he perk up at all?? Can you 'distract' him out of his mood??

Please keep us posted...

[PaigesMom]

CC - I'm sorry to hear about Chris.

This is only my opinion, but I think you've got a good handle on what is going on with him. He's had so much go on with his mouth that involves pain recently that he probably thinks if he eats it will hurt and he avoids it.

I know even as an adult if I have a toothache that gets repaired when I go to eat on it, I sort of wince as I take my first bite for the "fear" of it hurting again. Same thing with other things that cause pain - the thing is that we can realize we have to try and we can realize that if it's not better we can get it fixed, it will cause more pain and then eventually it will be gone. Maybe Chris is just stuck in that pain cycle and is not reasoning that it is now gone --------- or maybe even on a different aspect, he might be afraid of having to go to the dr. or dentist again and he relates eating causing pain and then to the dr.

I think you can work thru it, obviously if he starts to lose weight it becomes a huge issue that might involve counseling or something.

Can you get him to eat anything - how about water ice or crackers - just so he can realize it wont hurt and then move forward with more chewy things?

I know it may sound silly, but it's just a thought.

Good luck.

[shellk]

CC,
There was an older lady at the scholl that Kourtney first attended when she was an infant, her daughter at the time was 13 DS, and she was having problems with her and they were not behavior, she ended up taking her to see a phychiatrist and the girl was also speech delayed and what they discovered is like what Jackie said she was suffering from depression, they put her on meds for this and w/in a couple of months she said that she had never been so thankful as to have her daughter back ..Maybe he is getting that pre teen jitters...I have an almost 12 year old and a 12 year old boths girls and they are really starting to reach that age of independence and want nothing but what they think is right..Twitching the neck rolling the eyes refusing to do certain things and thinking they are always right butting in on conversations they don't belong in and so the list goes on..Maybe Chris is reaching this stage in life but with being delayed inspeech he shows it in a different way..I am not shrink myself, although I see one once a month, I wish you TONS of luck with this and hope that things get worked out. I would go with my gut instinct becaue no one knows him better than you do

Good luck sweetie
Michele

[updowns]

I say go with your instincts Christie. That's what I tend to do and I have been proved right (tho I often wish I was wrong!) so many times.

Good Luck.

Stella

[momofrussell]

Hey CC, I totally understand you wanting to cover all your bases for Chris's sake... and that's ok! Before we ever took Regan to psychiatrist over a year ago, I wondered for a REALLY LONG TIME what was going on and what we needed to do. I finally decided that I would rather know that NOTHING is wrong than to dismiss my thoughts and find out later in life that it could have helped her, know what I mean?

So, DS or not, if you feel that Chris might benefit from some therapy, I say GO FOR IT... it has helped us LOTS! We now see a pshychiatrist and a pshychologist... and it also eases my mind too! Which you may need too!

Hang in there!!! And it may be some anxiety type stuff! What ever it is or isn't... wanting to help Chris is a good thing!!!

Good luck!!!

A.

[christie]

WOW gals, THANKS for all your input ;D

Chris will now eat soft food, he had a yogurt today, can I say YES YES YES BUT he will still not eat ANYTHING one has to chew I do believe he is having anixety (sp?) over chewing as I guess he thinks its gonna hurt His favorite thing in the whole world is McDonalds Chicken nuggets. K, he asked for them, got his whole plate ready, held it to his mouth and just put it down and would not eat it

Nothings harder then knowing something is bothering your child and they just can't express what the heck it is Well I guess yes there are other things that are harder but Man oh Man this is a tuff one

I don't think he is depressed as he is his happy outgoing self but anxiety (sp) does seem to be my guess here. I hate to put Chris on meds but if thats what it takes I will do what ever I have to do. The ped and I are meeting tomorrow to put our heads together on this one.

I will let you know, THANKS for letting me ramble on, helps me to talk out loud bout it and as always, I do appreciate all your input.

CC

[Jackie]

Chris is almost an adolescent....and I can assure yu (reassure you?) that many parents I have known report behavior and personality changes (most temporary) during those years with their kids with DS. All kids approaching their teens have mood swings and behavior changes...its all part of the P word....puberty...but it seems more noticeable in our kids with DS....probably because they really dont do so many of the things other kids do going thru these changes that distract us from their emotional problems....so we focus in on personal behaviors. I do wish you luck and wish there had been someone to help us thru these years with Emily. We did all survive, though....if thats any comfort.

Jackie

[Jackie]

just a suggestion....I think there needs to be a site dedicated to adolescence. The teens and adults site I use is pretty much populated by people with kids in their twenties....but there are a few with younger kids.

I think there are many issues peculiar to the ages of 11-19 that parents of young kids dont deal with and those of us who have survived those years are soooooo glad to leave them behind....LOL....that it would benefit many to have a special group. Maybe instead of starting a total new site...we could create another area here on UNO dedicated to just that....these are serious and weighty issues and I think parents of kids in these age ranges need a special kind of support.

Just a thought
Jackie

[Danielle]

CC - your gut is usually right on when it comes to your kids (not to mention everything else!) -- I'd say bring him in for an eval and see what happens....sounds like Chris does get somehow traumatized from a painful experience so maybe there's something that can be done to help him come out of it (or deal with it) more easily? GOOD LUCK!!! Hope your little Character is back to himself soon!!

Danielle