Disabled child.

Arica - posted on 03/15/2010

Oh I definitely do. And you have apparently done a remarkable job in helping your children beat the odds. I pray for the day my youngest will speak but if she doesn't, it certainly doesn't mean I'll love her any less. She is a wonderful little girl, same as her older sister. I always tell people I learned how to be a mom from my daughters. My youngest's neurologist diagnosed her with a mild form of cerebral palsy but you really couldn't tell it if you saw her. She's very smart and very active. Her only limitations are her speech and hearing. But she signs well. Her heart defect was corrected in '07 and she has been doing great since. To this day I cannot believe how many problems she was born with and I did blame myself for it. "Did I do something while pregnant I shouldn't have?" "Did I not do something I should have?" The questions were endless, but she's beaten all the odds against her and I know with her drive, she will continue to because she lets nothing stop her. She'll be 8 on April 1st and I always tell my girls "The sky's the limit in dreaming what you want to be." My youngest wants to be a rock star like her sister does, and I'm a songwriter, so music is a big part of our lives. My oldest said to me "But mommy, she can't hear!" I said "Baby, trust me, she could do it." I'm very much influenced by Helen Kellar who was deaf, blind, and mute. And also by Heather Whitefield, a deaf Miss America some years ago. I tell my children "If they can do it, we can too!" I'm known as a modern-day Beethoven since I'm a deaf songwriter like he was. You should see my youngest play my guitar! She is a riot! lol My oldest can sing pretty well.

I, too, have disabilities. I had my females removed 4 years ago, and have lung disease, heart disease, gastrointestinal problems, and valve disorder. Yes there are days I feel like hell, but I force myself to keep going. My daughters and husband still need me, and I need them.

Lesa - posted on 03/15/2010

Hi there.. I am a Mom of 2 children with disabilities. The older boy was born with a gread 5 brain hemmorage (suppose to die at 3 days old). My family did a lot of praying and just kept on loving him everyday. We were told he would NEVER eat properly, walk, talk, toilet train, and would have seizure disorders. Well, I can tell you that he is talking, walking (with forearm crutches), eating, potty trained (of course) and never did have those seizures. In fact he is now 19 years old, going to college to be a phychologist and living on his own. Kids are AMAZING when the parents don't give up or take doctor's word and intirely fact. My youngest child is a different story. He was born very early. He had seizure disorder, will never walk, has to be tube fed, won't be toilet trained, talks some but uses a commucation device and is also in a wheelchair. We will be caring for him for the rest of his life. He is currently 18 yrs and will graduate from high school in May. He is still our little blessing. I have learned a great deal from my kids and experienced temp. disabilities for myself. With having shoulder, back, neck, gall bladder and female surgery. I guess what I trying to say is don't ever sell yourself or your children short, Keep trying and seek out friends/family for support and ideas. I sure will share things I have tried and my experiences over the years. I now have a 2 yr old grandson with a severe heart defect. He is already a miracle and wasn't suppose to live at birth. Keep up the great work and love them every day.

Melanie - posted on 03/13/2010

Thank you Arica but as a parent yourself you know you just have to keep going on regardless. I'm not saying it's easy it's absolutely terrifying but I know i was dealt this card for a reason and i have no complaints life isn't supposed to be easy. I just do what i have to do same as everyone else xx

Arica - posted on 03/13/2010

Wow I agree that has to be really hard. And children with autism can become easily overwhelmed by too much stimulation. But maybe she can help them by touching things. Different textures of like stuffed animals and blocks so they know the difference.

Gianina - posted on 03/13/2010

Hi Arica, I have a son with autism. Now, I do know a friend who has twins with autism and blind. It really breaks my heart because children with autism relies on visual cues to communicate. I have no idea who my friend can communicate with her twins. I just want to cry. God bless you.

Iridescent - posted on 03/11/2010

Kids are such a mystery. Really, the only way we've dealt with things so well is because everything we deal with was added one at a time for the most part. If we were just dropped into our family today with no background to care for them all, there is no way we could do it. Day to day has mostly been survival only for almost 3 years now, but we're getting to where we are able to relax a little more now and do more with the kids without becoming overwhelmed. We have in-home nursing care, which helps us catch up on some dearly missed sleep and things out of the house we need to do to keep it running.

As far as having a child with such a severe disease, we always hope for the best. We do our best to keep her health maintained, and when she's sick we do our best to get her better as fast and safely as possible. We had to set goals for her when we found out about her diagnosis - did we want to treat aggressively, and remove her quality of life in the hope for a longer life, or did we want to treat a little less aggressively and let her live as a child her age has a right to live, and take the risk of more illnesses and a shorter life? We chose quality over quantity for her, and at this point she's a happy little girl. We will be sorry if it comes to where our decision costs us her life, but we will never regret that we allowed her to live as any other little girl should. It's not an easy choice.

We didn't know we carried the gene for it until after her diagnosis. We were quite fortunate that she is our only child with it. We found out I also carry the gene, and my sister seems to as well, because the tests come positive for us and symptoms match, but they can't find the gene. We're waiting on medicine advances for many things, and the gene mapping is one.

Arica - posted on 03/11/2010

Wow you definitely have alot on your plate with all of your children having such severe limitations and medical problems. I couldn't bear the thought of knowing my child could die any day like you do with Cassie. I have never heard of that disease before but I followed your link and it does sound pretty bad. I'm so sorry your children have all of these difficulties. I don't know how you deal with all of it. My youngest, along with her hearing, heart, and eye problems, was also born with a brain defect. She is missing the corpus collosum of her brain. This defect is known to affect major organs, such as liver, kidneys, and heart. This could possibly be another cause of her heart condition. I really don't know where she gets it from. Heart disease does run in my dad's family, and I have heart disease and a valve disorder. I have no idea about my children's father's medical history except that his whole family is deaf, including him, and his father died of cancer when he was a kid. As far as I know, neither of my girls are allergic to any foods. My youngest used to vomit on hot dogs but I guess now she's fine. She was also thought to be allergic to dairy products but now she can eat them just fine so I don't know what that was about for awhile.

Iridescent - posted on 03/11/2010

We deal with a lot of special needs in our house. I was really slow to develop, deaf when I was little, had brain damage and was diagnosed as mentally retarded when I started school at 5. My hearing has not been fixed, but with fewer infections I am able to hear more; during an infection I'm deaf, but otherwise I have 60% hearing in one ear, 40% in the other. There are a few tones I cannot hear at all, especially deep voices. I learned to talk when I was 5.

My first son is 10, and was diagnosed as moderately/severely autistic when he was 3. He has improved greatly! He is still on the spectrum, but on the mild end now, mostly due to so many interventions and a whole lot of who knows what. He also had failure to thrive when he was younger, and PICA. That has greatly improved. He does still have difficulties, but we address them as he needs.

Zach was our second. He could hear at birth but by 2 he was deaf. He got a second set of PT tubes and a surgery to correct his ear canals when he was 2 and hasn't had any difficulty since, and his hearing came back. He does have difficulty with speech still (he is now 8), but it's mild.

Cassie is our third. She has a lot wrong. The most serious issue is Ornithine Transcarbamylase Deficiency (http://en.wikipedia.org/wiki/Ornithine_t...) and although she is a girl, her case is severe. She is 2. She does amazingly well despite this, with a lot of medications, formula, feeding limitations, frequent surgeries, and a maximum of 3 months between appointments for diet, metabolic neurologist, GI, surgeon, and geneticist. She also gets special ed therapy through the school and requires a nurse in-home for care 24 hours per day. She has a lot of different diseases combined, which are all so rare. We found out with our others we were quite fortunate. Her liver is currently doubled in size from what it should be. Her life expectancy is pretty low.

We also have a set of twins. Justin is very developmentally delayed (will be 3 next week, tests at a 14-15 month age level globally). He has many autistic symptoms as well but we are waiting to test as he gets appropriate therapy now regardless of diagnosis. He has milk and tomato allergies, and was diagnosed with asthma last year after a full year of pneumonia. The asthma disappeared completely though when we eliminated milk from his diet.

Kaylee will also be 3 next week. She is developmentally delayed as well, by a year globally, and 2 years in attention. She's allergic to milk as well and doing very well. Her stature is quite small.

Arica - posted on 03/11/2010

My daughter is 7 and goes to Michigan School for the Deaf. She's in a class of only 4 children including her so she gets really good one-on-one focus. She has therapists there and all of the teachers and everyone she comes in contact with throughout her day know sign language. (They are required to.) She was born with what is called "Waardenburgs Syndrome". I guess her father carries the gene because a couple of her half-siblings from him have it, too. It causes deafness, wide-set eyes (hers aren't), and loss of pigment in eyes, skin, or hair. She has a small patch of completely white hair on her forehead. I mean, we're talking white as a piece of paper. And I guess it caused her to have the weak eye muscle. My daughter will be 8 on April 1st. Her cardiologist did suggest that her heart defect and hearing loss could be related. The thing is, my girls' father and his whole family are deaf as well, and me, my mom, my grandma, and 2 of my cousins are hard of hearing, so hearing loss is pretty dominant.

Kristin - posted on 03/11/2010

I have worked with children who have difficulty hearing. Many of them have small ear cannals, this is common in children with Down Syndrome. Then there are children with limited hearing loss due to a specific type of dyslexia. Many children with Autism use sign language if they are not verbal. I don't know if the heart defect is related to the weak muscle tone. I have worked with children who have weak muscle tone. So, you can't be alone out there! All these children have parents, teachers, caregivers, therapists. There are organizations on facebook. I found some when I recently started to set up a page on there called "Private Special Needs Support." (Please Join) I don't know your child's age but by preschool it really helps your child to have both non-disabled and similarly disabled friends. If you haven't received services like Occupational Therapy I would contact your school district and ask for information on Early intervention. Another place to look is your state's Department of Public Welfare page under the I.D.E.A. Act. And don't forget signing is a language that is gaining popularity. Many parents are looking for children who sign to be playmates for their child. Hope to read that this helped you on my facebook page "private Special Needs Support."

Arica - posted on 03/11/2010

Oh my gosh! That has to be extremely terrifying, especially with the possibility that he may not be able to be revived. I don't know how you do it but I give you endless credit for keeping going. That has to be so scary and trying. Before my daughter learned to sign to communicate, whenever she got angry she would bite her sister. There were many times my other daughter would have 5, 6 bite marks on her from my deaf daughter because she was so frustrated that she had no way to communicate. Now she signs very well and goes to a school for the deaf. She'll be 8 on April 1st.

Melanie - posted on 03/11/2010

My son regularly stops breathing and we have to resuscitate him. He has a lot of problems that cerebal palsy children have. He has a life expectancy of 5 years at the moment but if his disease doesn't progress he will live longer than that. He can't talk so he has started to learn baby sing language (he's 2) with a view to going to more advanced signs when he's old enough. My daughter is fine and she also learnt to sign to help him communicate with us. Everytime he stops breathing it gets increasingly difficult to resusictate him. It is such hard work but rewarding at the same time. xx