Any other young moms with kids with disabilities?

Amanda - posted on 06/26/2011 ( 13 moms have responded )

516

15

34

I had my son Jake when i was 17. when he was 4 months he started having seizures, we started testing for that. when he was 15 months i noticed a lack in verbal skills, and him losing some things he learned. so that lead to more testing. I had his sister when he was 16 months. then when his sister turned one (that month) he was diagnosed as autistic. he;s three now and he;s been getting help and is doing good but it adds an extra layer to the stuggles of young mother hood

is anyone else mommy to a child with special needs? how has it effected you? have you felt more judgment because of it? any nightmare doctors or workers as a result?

MOST HELPFUL POSTS

Christina - posted on 06/30/2011

1,513

28

140

I have five kids. My second child I had at 20yrs old, and she was born with autism. My 4th child was born when I was 23yrs old and he also has autism. I was definately more judged, but I didn't care. I threw myself into books and education (DO NOT READ BOOKS FROM OTHER MOMS OF KIDS WITH AUTISM, just stick to medical books on it.) My children are doing great! My daughter is now 8yrs old, just finished 2nd grade with straight A's and is reading at a 5th grade reading level.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

13 Comments

View replies by

Desiree - posted on 05/02/2012

169

0

28

@Janeta Sedberry

Wow! That sounds sort of similar to Cystic Fibrosis. My daughter was diagnosed with it by her newborn screening. So far I seem to encounter most CF patients having more lung problems than anything but digestion is also affected. She doesn't produce the proper enzymes in order to break down & absorb the nutrients. So she has to take enzymes everyday before she eats. 2 pills each time. This will only increase as she gets older and bigger. she is now 3. She also takes something to help increase her appetite b/c weight gain is a big issue. She also has to have a higher salt intake, especially during the summer b/c that is one of the main things about CF, they lose a high amount of sodium in their sweat. There's so much more but if you'd ever like to talk you (or anyone on this thread) can message me :)

Krystina - posted on 04/24/2012

13

0

0

Hi ladies I know this was written last year but I created this account for my daughter she's 18 and her baby was recently diagnosed with seizures she's going on 4 months now. Im glad you began this conversation Amanda. She's trying to be strong but this is a very scary and emotional time for all of us. She's trying to graduate this year so that hasnt been easy at all! I was hoping you read this and know you're not alone as well! I will keep praying for all of Gods Angels to overcome this..stay strong and positive! Please feel free to add her so she can maybe convo with you all! :)

Janeta - posted on 07/10/2011

125

3

7

I am eighteen I had my daughter when I was seventeen when we were in the hospital they did her new born screening and it came back abnormal, the doctor told me that it was nothing to worry about yet that sometimes the first one comes back abnormal for numerous reasons, we had to get another screening done before we were able to leave i was called a week later and was told she has a carnatine uptake disorder (her liver doesnt break down her food into fat to turn it into energy) it can cause ALOT of issues! I have to take my daughter to Cooks Childrens Hospital once a month to get blood drawn to check her levels I have to give my daughter medicine twice a day (she will have to take it for the rest of her life) and we have many doctors visits! Any time my daughter is throwing up, not eating nor drinking I have to take her to the emergency room because it can cause hyploglycema and cause her to get dehydrated which can cause a whole another array of issues! I have to always have pedyalite and gatorade at hand! It breaks my heart becausue every month we have to go and get her blood tested and at not even a year old we walk into the lab and she sees the turnic and she starts crying and curling her arm up and wanting me to get her away from there! NO baby should already know whats going to happen and now what a turnic means already! This has been a very heart rinching time for me and my husband along with our family! This disorder can cause my not even 12month old to have seizures a heart attack go into coma die...its very scary! I have had nightmares about one of these things happening to her, It has made me have VERY emotional days and it has put a bit of a strain on my husband and I because we are ALWAYS worried about her! Ryleigh so far has had none of the issues that I said could occur and she lives a normal healthy everyday life! We make the best out of everyday and the drs visits and we just go about our lives as normal as possible. It is VERY hard though!

Jennifer - posted on 07/08/2011

46

48

0

I can tell you that I was 19 when I had my son. I am now going to be 36. He will be 16 next saturday and is doing great. He was diagnosed as high functioning autism at 11, but I knew something wasn't right. With alot of hard work, tears and frustrations, he is a great kid. I felt judged alot because of his aggressions, defiance,stubborness,etc. Its hard not to be believed by Drs and outside people. But those directly involved knew. Good luck!!

Amanda - posted on 07/03/2011

516

15

34

yeah a lot of provinces cost big bucks for it! in BC they cover 25grand a year until the age of 6.. but ABA costs 35-60 grand a year.. so thats 10-35 grand you pay out of pocket yearly. it's insane. I couldn't imagine doing it without the health care we have here..



what you can do while you wait is study up. as soon as i found out my son Jacob was being tested for it, i went all out learning everything i could. It helped me get over the shock and hurt at first. it was definetly one of the hardest things I've ever been through. I'd suggest trying to find a support group (easier said then done sometimes.)

Amber - posted on 07/03/2011

45

8

2

I have an actual diagnosis as well. I'm just still waiting on the next step which is the pediatrician to call with an appointment. But until then it's like hmmm what to do while waiting.. Yeah all my services were free as well. Thank god the psychologist I went to said it some people pay a few thousand just to get the assessment I was like :-0!!!! Wow! I live in Ontario and everything is free as long as it's early intervention. Otherwise it takes years or costs big bucks, so I've been told by all the social workers and specialists.

Amanda - posted on 07/02/2011

516

15

34

@ shawn: It's great he's making improvments! I definetly can sympathize with the looks of "she doesn't know how to/want to raise him." especially with the talking... its pretty bad for me, because even though my son is only 3... he's 3 foot 6 and 43lbs so he LOOKS about 5.

when ever i start getting the looks though i think back to a couple particular workers who've told me I'm an Amazing mother. that my dedication and work with my son has brought him so far. that he's so attached to me and he has come so far.

he started at 28 months with 5-10 words, now he has small sentances. wouldn't make eyecontact, now he will. wouldn't play with me, now he takes me to play.

I jsut concentrait on how well he's doing and silently tell them to shove it where the sun don't shine :)

Amanda - posted on 07/02/2011

516

15

34

I have the accutal diagnosis and it doesn't need to be a psychiatrist. my son was diagnosed by a devlopmental specialist. holds just fine to the government. I'm lucky to have gotten him a lot of help already, he's starting to regress slightly though.. but we're working with it. all my workers have been good, they've been extermly impressed with his progress and how well i work with him.

all the services i receive are free due to me living in manitoba. he gets a case worker, autism outreach, floor time couch, speech therapy, occupational therapy(still on the waiting list for th OT), I get respite, a funded special needs worker for daycare, free diapers and wipes since he's over 3. I had an early intervention during the first 6 months of him being diagnosed form OT speech and floor time. the option of free ABA.

I'm lucky to live somewhere with so much support for kids with autism.

@amber: That first little while is always hard to get through. but at least they caught it early. It can be a bit confusing. I hope you can find some resources soon! If you need someone to talk to feel free to add me to Facebook

I think the worst judgment is the looks in public when he has a melt down. I mean its bad for older mothers... but being only 21, and apprently looking 17/18, get me the shaking of heads. kind of like "oh god another teenage mother who's ruined her child." Its totally different when i take my daughter out, shes the most well behaved little girl all the time. the looks are getting easier to ignore now that its almost been a year.. they were the hardest before i knew why he was being impossible.

Shawn - posted on 07/02/2011

4

5

1

I had my son when I was 19 at 4 months the doctor found he had nystamus ( movement of the eyes that he cant control) so then started all the scary testing then at around 9 months the doctor was worried about him being delyed so we started seeing people from infants and toddlers a program that is through the school system for families with childern with devlopmental delays. The program has been the best thing for us they are so wonderful its like having an extra family they all really love my son and want whats best for him not just do to their jobs and get paid. this program or a progarm like it in all sates. My son has made huge impovements but still behind a bit we are trying to find a devlopmental ped that our insurence will cover to find out if he has autism. My family and friends have been very supportive of me and my son but when we are in public sometimes i feel people juge me when i cant contorl him in a resturant or when he cant talk as much as other kids his age( he ll be 2 next month) I think they think i dont know how to raise him or dont want to because i am young. I've always worried that people will think im not a good mom because i am young. But now i know it doesnt matter what people think i am a good mom and my son is all that matters to me.

Christina - posted on 07/01/2011

1,513

28

140

If y'all haven't had your child in to see a Psychiatrist, you need to call your ped and get a referral now. A Psychiatrist is the only one who can officially diagnose a child with autism. They won't push drugs on you. The quicker the better. You really do need the actual diagnosis so you can secure services for your child.

Amber - posted on 07/01/2011

45

8

2

I have a three year old son who was just diagnosed with autism a month ago. It's been quite a ride the last few months... I feel kind of helpless to be quite honest, he has a diagnosis, but it's like now what? I don't know what the next step is really. I'm still waiting for the pediatrician to call me..I've been lucky so far though, all of the doctors and social workers I've dealt with have been great.

Ashley - posted on 06/27/2011

956

23

134

I have a very close friend with a little girl that has some health problems and such if you would like i can try to get her to be in touch with you and you could ask her all your questions

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms