Education of a Severely Disabled and Developmentally Delayed Child

[whiteletters]

Hi, I'm new to this, and I would really like to know if anyone has any information to help me make a decision on this matter.

My daughter is 2 1/2, but evidently I need to decide right now if I will "homeschool" her or send her to public or private school. She suffered a lack of oxygen at birth and is severely disabled and developmentally delayed. She can not eat, talk, walk, sit, roll over, or even hold her head up for more than a few seconds. She is legally blind, also. She has weekly visits from therapists (since about 3 months old) who have been hinting lately that she will likely be dropped because of her inability to progress. She has daily seizures, is on a special diet for her seizures, as well as several medications and she is fed through a g-tube. She gets sick very easily anytime she is around people outside of our home, especially crowds. Her developmental age is less than 3 months old, besides her ability to smile and laugh a funny sounds.

That is the type of child my daughter is. I love her very much and see a lot of potential for her, but I do not see much potential for her in any schooling situation.

My question then is MUST I send her to public or private school, or "pretend" to homeschool her, or does the school system sometimes admit that a child is the way she is and "pretending" to teach her is a useless, time-consuming, process that will only create more headaches for me as her mother. Taking care of Julia Belle is a 24/7 job, and keeping her healthy is very important, since 61% of children with her diagnosis die before age 10, and 90% by age 20. That is way too early for me and I do not intend to let the school system make me waste time pareening around to their tune so some lawmakers can feel better about themselves, when it is absoltely useless to my daughter, and perhaps even dangerous, if she is to be in a crowd.

[ilovechocolate]

I'm a teacher of special-needs students. I suggest that you contact your local school system and see what services your child may be eligible for once she reaches the age of 3 (federal law mandates that special-needs students be served from the ages of 3-21). She can receive FREE evaluations and testing, and a team of educators will meet with you to determine what is best. When you meet, you are welcome to have anyone with you that you wish---friends, child advocates, etc.

She sounds as though she is medically fragile, and I'm not terribly familiar with services for those children, but I urge you to contact your school system and find out some options. Then your decision would be easier to make.

Good luck, and keep us posted.

[champagnium]

I don't have any advice for you, I just wanted to say that my step-sister is also disabled from lack of oxygen at birth, and she's 32 now. Developmentally she's about 2, and she's mainly non-verbal, but she has her own sign language, and while she needs 24-7 supervision, and she can be pretty challenging at times, she is also an absolute delight. Especially at Christmas becasue she still believes in Santa!! Enjoy all your special times with your daughter, and when you think you can't deal with one more meeting with education, medical or social service people, enjoy the warmth her special smile brings. :hug:

[Buc-O-Mama]

A lot depends on where you live. In FL, I homeschool my special needs DD but she is still eligible for services at our local public school. They did IEPs and child studies just as they would have if she was taking classes. My father is a special ed teacher and teaches the most severely delayed kids, they really do a lot to try to engage and stimulate them in different ways to help them along. Most schools also have homebound classes as well where teachers visit regularly. You have a lot of options in most school systems.

Once your DD is 3, you could take her to your local public school and have her evaluated and see what they recommend. It's free and early intervention can truely make a difference. You can pick and choose what services you think are best for her, they might offer suggestions that surprise you.

By the way, my DD is 14 now. When I took her to the school system at 3, she had no verbal communication and qualified for every service they offered, which we took advantage of. We homeschool now because her options in the school systems aren't satisfactory. Best wishes to you and your daughter.

[zakity]

I second the EI through your school district.

[hollyhill]

As always each child and situation is unique. Perhaps you can't make a long term descision but make one based on her needs right now. As a 2.5 year old maybe keeping her healthy is more inportant than anything else. So perhaps you can do preschool/daycare at home for now while keeping all the other options open. Re-evalute frequently perhaps every 3-6 months. At some point you may feel that she will benefit from Special Ed at school and you may need the break.

I have a severely autistic nephew. My SiL opted to put him in school, even though it was clear that he would benefit from one on one teaching. All his progress occured when he was given one on one work for a period of at least a couple of months. This was available in the school system only a few times (he is now 15). He was also kept "busy" in group classroom settings for the remainder of his school years. Where my SiL insisted that he be taught all the academics along with everyone else. The system humoured her and he is still at a Gr.1-2, level. That time would have been far more productively used teaching lifeskills and conversation, which he is finally being taught now. I know another autistic child who received far more one on one time from his parents (he went to school only half days) and he was taught what was necessary. He is far more capable and independent than my nephew ever will be.

So look at what her immediate needs are and base your school descisions on that ......perhaps she responds to your voice and is understanding more language.... perhaps reading to her is the best option for now (I am just using examples, you know her best). But perhaps in a few years she can get in a program where she has an aid that will read even more to her and take her on more outings allowing her to learn even more and you may choose that option! Or your only option is to put her in a school room with other severly handicapped children and only one Aid per 3-5 children. And no individual attentention at all,just babysitting. Well, you may opt to put her in that environment part-time......

So my advice (for what it is worth), do what is best for her now. No choice has to be forever.

Homeschooling works because you can indivdualize the education for the child and the family.