Special Needs

Marlene - posted on 07/28/2009

Hi Lisa,your not alone;i to have an 11 yr old little girl that has never been diagnosed from birth.Her disability is all physical with developemental delay and speech impairment.The great thing about it all is that she is HEALTHY and i always remind myself that,especially when we go to Childrens hospital of Phila.and see some of those sick children.But I feel like there are no other children like her which makes me feel very alone.My name is Marlene McCleery

Tegwen - posted on 07/28/2009

hi i realy relate to what jennifer campbell is saying about many family members just not getting it!! we have support & understanding from some of our family & thay are great with my son phil. also i as most of us went down the same road as jennifer taylor of blaming myself as Phil was diagnosed at the age of 5 with coffin-lowrety syndrome (a Genetic disorder past down through the female line) after a nearly 5 year search for answers! he is now 15 years old he touches just about all that get to know him with his specialness! i encorage all of you to look for that in your own children as its just such a blessing! just remember each end every on of us was specialy chosen to be a parent to such a great Gift. look past the disabiitys to the abilitys as thay are all gifted in so many ways! afterall we are lucky to have been given the privalage of somthing so special!!

Jennifer - posted on 07/26/2009

Hi, my daughter Cara had a stroke before she was born we didn't find that out until she started to try and crawl, she would drag her right leg. We found out she has a small dead spot on the very top of her left side of her brain the size of a pinkie nail. She has to wear a leg brace and a hand brace she's a little slow with her school, but I'm lucky her school and teachers and doctors and family they are all there for her and the rest of us when we need it. I felt so guilty when we found out because I have Epilepsy, I had only 1 seizure while I was pregnant I was so happy she came out looking healthy, she was average 7lbs. it was great. Then when we found out about Cara I kept asking if it was my fault they told me no, I know that to be true now because my 2nd pregnancy my son kept me in and out of the hospital with seizures but he came out fine. Jennifer

Michelle - posted on 07/26/2009

Hi Lisa, my youngest son is 16 & was diagnosed a few years ago with aspergers & dyspraxia, eventually they worked out it was caused by the anti-convulsant drugs I was taking when pregnant. I have a big dent in my forehead from bashing my head against a brick wall to get any kind of support for him, even after I managed to get a diagnosis (that alone took 2 years of pushing). He still has no support to help him get to college/into work/live independently as an adult and is currently spending his whole time on facebook/wickipidea getting more and more depressed with his life. I work full-time with adults with learning difficulties including autism, and I know how important the right support is going to be for him. I don't know if it's better in the US but in England it is a complete nightmare - there are very few services for kids with ASD's. My son is very intelligent in a lot of ways - he has a brain like an encyclopaedia - but he just needs someone who can help him with the things he needs help with. Just remember you are not alone, focus on the positives, and then take a deep breath and start kicking doors down... Michelle

Cathy - posted on 07/21/2009

Hi my name is Cathy my son is diagnosed with cerberal palsy I would like to chat with other moms to see how they handle things

Vivian - posted on 07/21/2009

Hi, my son was born "normal" but at the age of six had leukemia. He finished treatment three years and two months later. Two weeks after, he went into cardiac arrest and arrested over 20 times in the course of 12 hours. He is left in an unresponsive state. I care for him here at home, any physical therapy he gets is given by me with very little options. The best thing I have found is the hyperbaric oxygen treatments we take him too. He began to smile again, even if it is not intentional, it is my sign from God that we are doing exactly what he wants us to do.

Lisa - posted on 07/20/2009

Thank you all for your responses - We live in Utah and there are not very many services available for special needs unless you are at a poverty level and since I have to work full time I feel guilty taking time off to go to specialists and try to find out what happened. I feel very lucky that she looks normal and can walk - there are so many other parents that have many more challenges than we do and I am very grateful that she is healthy and happy. I am interested in trying to start a daycare for special needs kids and think that it would work in all states - but it is very time consuming and I never seem to have enough time in the day. My favorite part of the day is coming home to see my child and giving her a big hug and kiss.

Jennifer - posted on 07/20/2009

It is very nice to know that there are other parents out there who understand what its like - especially when there are many friends and family members who just don't "get it"... our son is 5 and was diagnosed at age 3 with Aspergers. Although we knew something was going on from the beginning...

Ella - posted on 07/20/2009

Hi Lisa

I have a 20 yr old son who was diagnosed when he was 2 yrs old. His diagnosis is developmentally delayed with mental retardation and austic behaviors. His age range is around five yrs old. It has not been easy but here in Sacramento we have programs for our teens through the City of Sacramento Access Leisure Program. It has been a saving grace. The staff are wonderful with our young adults. The socialization skills they learn and all the other things are wonderful. They have taken our kids on outings out of Sacramento. Latest trip was to Disneyland. But the program will be ending soon due to budget issues. What are parents to do??? Hopefully, you can get your teenager into a program such as this. It would really be a blessing for her and you. She would be able to interact with other teens like herself and not have the stares and questions. Good luck and May God bless you and yours.

Ashley - posted on 07/20/2009

I totaly understand also. We all feel like we are going at this alone but we aren't. My daughter has had so many genetic test done and everything is negative. I just took her for more bloodwork per her genetics dovtor cuz she does this or that she could fall in this syndrome or that. It took me 2 months to finally take her. I feel like saying sometimes she's not a pin cushion or an experiment, but I know they are doing their jobs by searching for answers. She has hydrocephlaus which I believe has created all of the problems. She is now 5 and they just barely found out the hydrocephalus was congenital, the test at birth was negative & all the othe MRI & CT-scans since then never showed anything. It was very irritating to hear. Everytime we go to the doctor's seems like they never have answers or what they said last time is no longer the problem & it's something new. I think it's wonderful to have networks like this cuz we all feel alone at times when it comes to these issues. Hope you are feeling a little better.

Robin - posted on 07/19/2009

one other thing, my daughter has seizers and they really don't know why or where they come from. there is no scaring of the brain or any other sign that she has ever had a seizer before.

Robin - posted on 07/19/2009

I have been there before. no your not alone onany thing like that. I have a friend that their child does not have a diagnoses either. just keep tring till you fiend a dr. that can help you.

Cindy - posted on 07/18/2009

For some of you with special needs kids, you may want to look at this website www.nacd.org. My son 16 does a program designed by these people that I administer at home. Luckily in my state he is on a scholarship after attending several years of public school. There are lots of special needs children out there and lots of special parents!

Kathy - posted on 07/18/2009

I have a daughter who has spina bifida and the school is not pushing to her potential and that is what is making me really mad, They are just pushing her through just to get the money. I even have it in her IEP and they are still not doing it.
Please for your kids sake push the teachers to give them homework to see how far your kids can go.



Kathy

Denise - posted on 07/18/2009

You are definitely not alone. I have an adult child diagnosed with being developmentally delayed. She's 26 now, Hasn't been easy she had surgery at 18 months to repair a hole in her heart. Thank god she don't have any other real medical problems. I know alot of special needs children have other medical problems. But, since she had her surgery she's been healthy as a horse. Now she attends an adult program which is great for us and for her. Through her school years she was in the life skills program. To help her become more independant and this program continues where school left off.

Nancy - posted on 07/17/2009

Hi Lisa, my name is Nancy, I am the mom of a 22 yr old special needs daughter. Even though she has been "somewhat diagnosed" since she was younger, they have added & subtracted diagnosis for yrs. To look at her, she looks fine, other than she looks much younger than her age. That can be both a curse & a blessing. I have always felt so alone & always having to explain behaviors and reasons why I do one thing and not the other. If there is any advise I can give you that I am so trying to live by now is that there is NO ONE that knows your child better than you. I tried EVERYTHING EVERYONE TOLD ME TO DO. Now I do things MY WAY. I KNOW WHAT MAKES HER TICK and I TELL THEM. Not with arrogance, but be steadfast and stick to your guns. Some of the "experts" will have you chasing your tail and that only makes things worse for you and for your child. And trust me, teenage yrs are REALLY DIFFICULT!! Mine may be 22 chronologically but much younger emotionally!! I hope something I said helps. talk to me anytime!!! Nancy

Donna - posted on 07/15/2009

Hi Lisa,

My name is Donna. I am a divorced mother of a 13 year old son with bipolar disorder. Talk about feeling lonely. You are not alone.

Nicole - posted on 07/14/2009

Hi Lisa,

I do know what your saying. When I was at the nero for the first time for phoebe about her seizures. He even said that it's hard to dx kids that have those delays. My son also have other dx's, but his most dx for him is the developmental delays.



Nicole