DownSyn Forum

[TracyR]

This week I have been down on Down.

On Sunday I was asked to babysit a 10 yr. old with DS for an hour. I did. He was pretty good. Spoke pretty clearly. He was way shorter than I had thought he'd be - he was about the hight of a 5 or 6 year old. He was fine.

But I came away from that meeting so sad. I have been sad all week. As much as I love and accept Ezra - and I am sure you can all relate - it just kind of "hit" me. My child is different. He'll never be "normal". People will always stare. And his...well, his mental capabilites are limited. I thought I was past this but...it has made me so sad.

Ezra is doing great. He had his development ped. appt. on Thursday (bi-annual). He has made great progress. He is about 30 months old now and she put him at:

Speech - 12 months
ADL/social - 17 months
Language (signs) - 18 months
Gross motor - 18 months
Spacial skills - 20 months
Fine motor - 21 months

I know this is great. I am so proud of him. We are testing further on the GERD and aspiration as causes for his many, recurrent lung infections (a grand total of 10 pneumonias in 2.5 years!!). So we've been back at the hospitals for testing.

(Thankfully he has not needed the oxygen at home for over three weeks! But then again, he is on antibiotics again so we'll see what happens when he comes off them. Maybe summer will be better.)

I am so proud of him and love him so much. He is turning into a little person. Maybe that's why my meeting with the kid on Sunday knocked me over for a while, because Ezra is not a tiny baby anymore. He's gowing up. He's already showing signs of stubborness. This whole thing with the hearing and needing aids has thrown me for a loop and made me feel so alone. And I'm...

Scared.

[Kimmy]

Hun..............((((((((((((Hugs))))))))))))),

Teah is nearly 12 now - and I know exactly where you are coming from - it is so easy to focus on the difficulties and differences even though you see the positives!!!

I think those feelings are normal (well, ok, they are for me!)
Everytime she goes to school and I see her peers developing, I see Teahs differences. When she visits the local SN school I can not quite bring myself to imagine her going there in a few months time.
As her brothers and sisters grow and go out on their own, ride their 2 wheeler bikes, sit down and read a book, talk to me without me having to guess what that important word was etc.
It makes me think way to far ahead in her future (which by the way I see as her being in semi independant living - away from home, with a job)! but that is still sad (for me - not for her - she loves her life, I love her - would I want her to be different - shocking as it sounds - yes!!! Because I see struggles before her, I'm scared of what might happen to her when we are gone, I don't want to see my daughter constantly struggle. Would I want to change her - no - it's the learning disability I want to change - not my daughter!
I am well aware I am waffling, contradicting myself and probably make no sense what so ever, but - Yes, I'm scared as well and sit here typing with tears in my eyes.
I love my little girl so VERY VERY much and it makes me sad to admit that I have these feelings. xx

Kimmy

_________________
Kimmy
Mum of Nicole 08/98, Teah 08/00(DS, ASD), Etienne 03/02 and Pierre 09/04.

[AliMama]

{{{{HUGS}}}} Sorry you are having such a hard time. I think these "I hate DS" times come and go as our children age. I have had many of the feelings you describe, and I think it's completely normal to feel these things. Hang in there and feel free to come and vent here anytime.

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

[mellysmom]

Sending you hugs. I know how you feel. I'm pretty sure the majority of us know how you feel. Your feelings are normal. Melly is also turning twelve this month. She is way behind all of her peers with DS. I get scared, too. We love our children fiercely and only want the best of everything for them. It's difficult not knowing what the future holds and I'm the type of person who wants to know everything NOW!

Try to enjoy today for today. There's nothing wrong with making plans for tomorrow as long as you know you'll have to go with the flow with what each day brings. This is hard for me, but it's what I know I have to do. If I look to far into the future, I panic. If I only concern myself with today and maybe tomorrow, I can handle it.

Tomorrow has enough worries of it's own.

Michelle

[Oxy]

yeah...same feeling, most of the time. love or no love, i would take the DS away in a blink and everything that comes with it. I dont like anything about it, and even if it changes my child completely, i'll take it. There is too many bad things that come with it.....when they are younger, they r cute and cuddly, even being behind doesn't seem too bad, but the cuteness goes away, as your child grows, you expect him to become a boy, a man, and they do, in some ways, but still are more like toddlers. And i don;t want a toddler for 7 years, i don't want a child for 30 years, i want all the stages to pass but it seems like as soon as one stage passes, there is always something bad that comes with the next, its never just normal, and it never will be normal. Oh well, that's life. we live in a messed up world. at least our kids enjoy themselves and are not suffering...there are much more that could've happen, so in comparison to some problems, DS doesn't look so bad after all....thats what i tell myself whenever i get depressed. i compare him to kids who never walk and talk, who can never feed themselves or take care of themselves. its sad to look at it this way....but u gotta do what u gotta do to make yourself feel better....and you will....

_________________


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

[Kimmy]

Oksana,
You are SO right, and I do look at other children/adults and think myself hugely lucky to have a daughter that can do SO much, has minor (in comparison) medical issues and WILL have a happy, productive life.
Then I feel bad for having my 'down' day, when I think of some of Teahs friends (with other disabilities) that are sadly no longer with us or struggle to survive day in day out, whose life expectancy is greatly reduced, who will never live alone, or walk or talk or be able to exsist without 100% support.
AND, the UP days by far outweigh the down days.

Kimmy

_________________
Kimmy
Mum of Nicole 08/98, Teah 08/00(DS, ASD), Etienne 03/02 and Pierre 09/04.

[DanielsMommy]

My son is 7, so just a bit younger than the child you watched. But, he is no longer the cute toddler or cuddly baby. However, I"VE aged right alongside him.

Remember one thing, as your child ages....so do you. Not only in the physical sense...but emotionally, spiritually etc. I've had 7 years with my son. He didn't become 7 overnight. It was a gradual change. So remember, going from your 2.5 year old toddler to a 10 yr old boy....sure that is going through you off balance for a second. I can totally see where you are coming from. But remember....by the time your son is 10....you'll will have the memories of that first day of kindy, kindy graduation....going to 1st, 2nd 3rd etc, playing sports all those things that our kids do growing up. You're at the potty training, trying to speak, toddler behavior stage. I'm more in the grade school times. Remember when your son was an infant...and 3 years old seemed so far away. Well, that's the same way 7 feels . My son goes to our local elementary school, sits at his desk, does his work....more like other 7 year old in many way. Yup, he struggles with things....but some things are SUPER easy for him. When I look at myself...I can say the same thing about me

The best advice I ever got when Danny was a baby was live in the stage you are at. Don't try to imagine your toddler as a grade schooler or teenager or adult. God willing...you will be growing and aging right alongside your child...and your experiences will help shape your perspective when your son is finally 10 someday. When Danny was 3, I couldn't have imagined what 7 year old Danny would be like. But, here he is. As I look forward to teenage Danny.....sure, kind of takes my breath away. But, it also scares the crap out of me when I think of my 9 year old daughter (who is typical) becoming a teenager.

_________________

Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

[luvpapa]

Hello All,

coming after a long time on the forum to express some thing and found members on the forum having the same feelings..Luvkesh is 10 months old now I also do get the same feelings. sometimes it gets very tough..

luvkesh development pediatric evaluated him for his Motor DQ and IQ.. he ia 60% on both things...although he has improved in his motor skills but not on IQ.. he has not been gaining weight for last 2 months..he has gained on 200 gms only.. doctor has advised us to test his thyroid level and see if that is the issue..

warm regards
luvpapa

[seansmom]

I've been there several times too. Mostly when we are around kids his age. I have learned to shut the door on thoughts of "what if". I agree with focusing on one day at a time and the stage you are in. It takes time to get there though. It is all a process. You will get there eventually...

_________________
Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs