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My daughter who is 14 years old was recently diagnosed with Asperger's. Four years ago she was diagnosed with ADD only. For the past 4 years she has been hospital homebound schooled because of severe anxiety attending school. It was her middle school that suggested that I go hospital homebound with her and it has worked out exceptionally well. She loves attending class via the telephone, loves the schedule and finally is getting great grades. However, I have had enormous pressure on me, by friends and family, to get her to attend regular school. Last year we tried a private school with a mixed class of 7th and 8th graders. There were only 7 children in the class and it was a Christian school. She was in 7th grade and was failing badly because of poor attendance. She was also bullied. I read the emails she recieved from other children. She was so sick most days because of high pulse rate that she could not go to school or if she did she ended up in the emergency room. I had to enroll her back in hospital homebound. She did great again and was promoted to the 8th grade.

We moved over the summer and she is in a new school state, and county, but I have enrolled her once again in the hospital homebound program. She is not going to school while I await an assessment meeting from hospital homebound. This worries me as she will have missed almost 2 weeks of school. This upsets her routine. She will not go into a regular school while awaiting the hospital homebound assessment. She almost passes out at the thought of it. My real dilemma is that my family believes that she will be attending a regular school which they insist she do for the purpose of socializing with other children her age. They refuse to believe she is anything but perfect by their definition. I agree with them in principal that she does need to socialize more even though she says she has no desire to but I can't force her to even under pressure. I was diagnosed AS after my daughter. I understand her lack of desire to 'hang out' with others. My family says it is because of me that she is not socializing, that I set a bad example. I hope that is not true but perhaps it is at least in part. I really do want her to have friends, and places to go, and things to do.
They say I should be strong and force her to go to school. Two years ago, and again last year, I had people help me physically carry her into school only later to be called to come get her a because she was not feeling well. I do know that if I can get her to try something for a while she can learn to like it. At first she was terrified to even call into hospital homebound classes but after she got used to it she loved it. NO ONE was allowed to disturb her while she was in class.
How do I convince my family that hospital homebound is the best option at this juncture for her while we work with a therapist on her social skills? They hate that I even take her to a therapist.

How do I get my family less involved or at least more supportive?

How do I get more support so that I know that I am not in this alone and that I am in fact making the right decisions?

Does anyone else have a child/children that simply cannot attend regular school?

I would love to hear from you.

No offense, but your family members sound like idiots. Are they taking into consideration your daughter's medical needs? Also, no one knows your daughter better than you, the parent. Do what YOU feel is right for your daughter, and tell anyone who thinks otherwise to mind their own business. You don't need to justify your actions to your family.

A few of my thoughts.

I wish I had more time to address this more thoroughly, but I'll say this for now: plenty of AS children are unable to thrive in a regular school setting for a variety of reasons, and these kids generally do extremely well home schooled. AS kids do learn to cope and adapt, but forcing things on them before they are ready tends to result in two steps back for every step forward; the best way to get an AS child eventually functioning in society is to respect the differences and understand the needs.

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DW_a_mom wrote:
I wish I had more time to address this more thoroughly, but I'll say this for now: plenty of AS children are unable to thrive in a regular school setting for a variety of reasons, and these kids generally do extremely well home schooled. AS kids do learn to cope and adapt, but forcing things on them before they are ready tends to result in two steps back for every step forward; the best way to get an AS child eventually functioning in society is to respect the differences and understand the needs.
Thank you so much for your reply. I feel less alone and confused. My priorty is my daughter and I want to be the best Mom possible.
I know the two step back results. Before the AS diagnosis I tried pushing my daughter because everyone was telling me to. You can imagine the results. She was even called a 'spoiled brat' and disrespectful by a doctor. We are recoving from that. I just don't know any other children with AS so I was not aware of the difficulties involved with attending regular school.



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gramirez wrote:
No offense, but your family members sound like idiots. Are they taking into consideration your daughter's medical needs? Also, no one knows your daughter better than you, the parent. Do what YOU feel is right for your daughter, and tell anyone who thinks otherwise to mind their own business. You don't need to justify your actions to your family.

A few of my thoughts [/i]

Thank you for your reply.
My family does not believe she has any medical needs and refuses to even read doctor's reports. My daughter and I are very close but would like to remain friends with my family. It doesn't seem possible at this time. My father obsesses that my daughter is missing out on a social life even though she has told him that she is perfectly happy with the way things are. I think he means well as he offered to pay for a private school again if my daughter would go. When she refused he insisted that I make her. I tried again to explain the situation to no avail.

There seems to be some confusion in your family about roles and boundaries. You are the mother, and you are the one who is supposed to make decisions about the medical care and education of your child, just as your parents made those decisions about you. If you offer to show them reports, that's nice of you, but if they refuse to look at them, they have not only forfeited any say (which they never had), but any right to offer their opinion. People who have no information about the situation aren't qualified to offer advice.

It may be necessary at some point to "push" your daughter to attend a school, but it may need to be a specialized school that is designed to meet the needs of students like your daughter, particularly those with school anxiety. A private school won't be the answer, simply because it's private. You will need to have some guidance about finding an appropriate school - perhaps, when the time is right, the hospital program would be able to help? You should rely on the help of professionals who know your daughter, and whom you trust, in determining when it would be best to transition into a school. When she's ready, finding the right program will be the real challenge, because the wrong program will be much worse than remaining in the home-bound program she is in. If your family is truly concerned about your daughter, rather than in appearances or in what they would have wanted when they were her age, they will stop haranguing you about what you are doing, and they will start paying attention to what she and you are telling them about her reality.

jat

Thank you for your reply. I never thought about asking the hospital homebound staff if they could help with finding an appropriate school for her when she is ready to transition.

Does she know about the diagnoses of AS?

If not, then informing her should be the first thing you should do. I cant begin to tell you how much of a relief it is to finally figure out why you are so weird. It is like an enormous weight lifting of your shoulders as you realize that your problems are not a result of you not trying hard enough, or being antisocial (like everybody keeps telling you), but simply due to your abnormal neurology.

Tracker,

She is aware of the diagnosis of AS. She says she knows she is different but does not want a label. My family keeps telling her she could be normal if she just tried harder.

I'm sorry, it's hard not to have family support. But unless it is a spouse, then you need to do what's best for her. And since you are the one most in tune with her needs, go with your gut.
My son was dx AS at 14, and now at 16, is dealing with anxiety and depression. School is his biggest problem.
I have read many posts on many threads here at WP, and the most helpful are from people with AS who talk about how life has been. There seems to be a concensus, school was hell! Being different makes you a target for bullies and smart mouth comments from anyone.
We are doing all we can to keep him going, school has been very accomodating. But how many times can you pick up your kid who's having a breakdown in school? (yes, I've been there too) I just want to take him out.
My husband does not have the same feelings that I have about school. I don't care if it's social, he hates it. If you say "homeschool" people say they will be isolated. But I would rather have an isolated child than one who has been pushed over the edge by their circumstances, and that I forced them to go to school. It is sad that he has talked about suicide.
In the meantime, we have signed up for a social skills class for teens at a place for autism and special needs. There are many parent support groups(I'm sure you've looked online) but not as much for teens. But they are out there. Keep searching. I even saw a phone support line locally.
What a horrible thing for a child to be forced to do something they hate. I know it is a social world, but there are other ways to be with people.
Mostly I think they need to feel good about themselves. We do lots of what he likes, hobbies, movies, card games, karate.
I'm glad you found WP for support. Keep reading through for advice from those who've "been there".

Wow, serenitynow, you really can relate to my situation. My daughter was hospitalized once because she treatened to commit suicide and ended up hurting herself. She was in regular school at the time. In hospital homebound she does not have the anxiety and depression she used to suffer from and her self esteem has improved.

I will have to research programs in the area that may help her with her social skills. Being new to the area after her DX I am not aware of any.

I wish you the very best of luck with your son. I know the world is very confusing to our children because they do not understand the rules of how to play the game.

I wish you the best too. I'm sure it is so heart wrenching for you to see her have such extreme anxiety.
Just a quick suggestion. This really helped my son. There is a very simple book,
"all cats have asperger syndrome" by Kathy Hoopman
He really related to a lot of this, and I have showed it to my family and his counselors.
I understand that your daughter does not want to be labled. I must say that it helped put into perspective for him and us, why and how he experiences some of these traits of AS. It was comforting.
He said, "there is a reason? I'm not just weird?"
Oh, my heart.

I have to addess this, because its a common falacy. She can learn to ACT normal, but she will never BE normal. ACTING normal comes at a price for those with AS, and that is often an increase in anxiety and exhaustion. There is nothing wrong with pursuing the ability to act normal, in my opinion, because there are times it will be necessary, but reading on these forums over the years has made it abundantly clear that the act will always be just that, an act, and that it does carry a price tag. Your family needs to understand this.

An AS diagnosis means that her brain is wired differently. Its fundamental; the wiring cannot be changed.

Someone like my father, who I do believe was AS (never diagnosed), since more lightly affected, can learn to adapt, and by all appearances seem normal. But he spent his life burying frustration and confusion, and I'm not sure he was ever really happy. He had happy moments, but I never saw him as a happy person. He just did what he thought he ought and, having a very high IQ, was able to make a life. The clear difference between my father, who never knew about AS and was never accommodated for it, and my son, who is diagnosed and understood, is in happiness. My son, I can honestly say, is a happy person. Sure, he has frustrations, but they don't defeat him. He knows who he is, and he is comfortable in his own skin. My father never was.

Your daughter will learn to face and conquer her obstacles in her own time and in her own way. Absolutely, nudge her forward. But there is a difference between nudging someone who is ready for that step, but afraid, and trying to force someone who isn't ready. The later will backfire; the former will leave her glowing with pride in her accomplishment. I know which I prefer, and so do you.

If you want to investigate potential private, special needs school options, do so. But "private" isn't the key there; its the special needs approach. We have a wonderful, wonderful school in our county that serves a variety of special needs kids; a friend just stareted her PDD-NOS son after a year of homeschooling, and he is doing really well, despite all his anxiety and sensory issues. Still, I have a feeling that such a school wouldn't sit well with your family; it sounds like they don't want a "special" child, they want a "normal" one. Well, wishing isn't going to make it happen, and they will have to figure that out.

It gets hard with AS because AS kids appear so capable. That makes it hard for people to understand or accept that there is a need for accommodation. But that need is real, as are the gifts. AS is a very mixed bag, and that is part of what makes it so confusing to those who don't understand it.

Anyway, I wish you luck getting your daughter settled AND, hopefully, getting the family to understand. You know your daughter in a way they don't. Trust your instincts.

DW_a_mom,

You are so right about the fact that she tries to act 'normal' for the benefit of others and it really does exhaust her. She is always saying how tired she is and that she hasn't done anything. Having a better understanding of AS, she is actually doing alot.

This is a learning curve for me while I educate others.

She is also a very happy child when people leave her alone and she does not have to act the way they expect her to.

I am now very sensitive to how she is treated and I may have to nudge her to try new things if she is ready I will never push her.