Re: Re: to mom of daughter who scratches. . . .

[Guest guest]

We have been doing this for a while and I completely understand. I am

writing a book right now of our journey. It may take years to complete

but our life is really crazy. my daughtter has autism and I do biomed

to help her which is many supplements and vitamins every day which she

hates. She has sensory processing disorder to all senses so if things

are too loud, soft, wet, sticky, smelly bright and so on she freaks

out. She has skin rashes like you wouldn't believe, she is super

constipated to the point of screaming to poop. Also her head has not

grown in almost 2 years so we think she has atypical rett syndrom. It

is a horrible disease where some children lose the abilty to walk,

talk, and eat by mouth. We are scared. She can regress or lose

abilites at any time before age 10. she also may not even have it so

we don't want to drive our selves crazy. nne can only eat store

bought baby food. her mouth won't allow anything else. she pukes if

it has any texture. She is almost 4. She will not potty train. I had

her genetically tested for rett and it came back negative but atypical

will not show on a test. We had her throat scoped and she has an inlet

patch that the dr said she can not feel but I think she feels it. It

might give her the feeling of somthing caught in her throat all the

time. It is inoperable. She may never potty train, eat normally, and

may regress but the worst of her is her moods. She is crazy mean

sometimes. She hites me and her self and it is so hard to watch. She

has rage. It is improvign right now with the b12 shots but that is

another story. Oh, also she was completely mute and was not going to

talk. really! We have freinds with kids with severe autism that are

6, 12, 11, and 3 that still do not talk at all. Not even mama. I

intervened with special meds to help talking and she did. She exploded

the next day with full sentences and then one month later started

reading on her own! She is very smart and sweet. She doesn't like to

be touched at all but recently has allowed me to snuggle her a little.

She is not empathetic and is very selfish. She is an only child and is

very spoiled. She yells at me to buy her a new toy every day. She

says those toys are old and no good take them away! she is constantly

hurting my feelings but recently I have taught her when she hits me it

hurts. it als hurts mommy feelings and now sometimes she will hit then

wait and say "I am being mean to mommy" and she will on her own say"I

am sorry mommy" I tell her right away I forgive you and it is all

better now. I know that might be weird to teach taht a sorry makes it

perfect because she shouldn't hit at all but sometimes she HAS to. I

am trying not to overreact to it and that has been helping. I am

married but it feels like I am on this journey alone because the

disapline is on me and really she is only mean to me. We did not plan

this when we wanted a baby and truthfully I feel guilty for bringing

her to life. I feel like we made a mistake. I know this is not to be

spoken but it is true for me. she seems to unhappy I feel so bad for

having her. She isn't always mean or unhappy but those times consume

me. It is hard to forget. My first husband used to abuse me A LOT so

now when my little child does it I have flash backs. Great huh? yeah

I have to remind myself she is sick with autism and doesnt fully

understand why she is doing things or how to stop them I just try to be

calm and teach her to calm her body and to breath. I do love her a

lot. I love me more. I am trying to see me as me and not just as her

mom. I feel like I have failed as her mom a lot of the time so that

can make me feel like I have failed at life. If we are seperate it

isnt' as personal when she is mean. She is just mean sometimes no

matter how good I am she just is. I still worry about rett and really

nothing is worse to me. When I see her run wobbly and her balance is

terrible like that of a one year old I fear it is coming. I also cry

for the things that will be gone. To have her words finally

come out to have them disapear again will be truely tragic and unfair.

It has all been so hard raising her. So hard on me right.?? No. the

truth is it has been hard on her too. She doesn't want to be different

and needs the most love because of her disabilities and I am such a

mean mommy that I yell at her sometimes. I know it must look awful and

I feel such terrible guilt because she is so disabled but at the same

time she is not. she is smart and she does know how to control some

things so when she attacks me I get so furious with the healthy side of

her. She is like 2 children in one one with autism and onw without.

There are moments you would never know and most people looking at her

don't know unless she gets exctied and flaps her arms and humms really

loudly. My life is a joke. For real. We have chosen to poke fun a

little and try to laugh at how silly things get sometimes. I am a

super emotional person so I can not just ignore my feelings I hav e to

really feel them. and i do everyday. A rainbow of feelings wash over

me, I just have to decide wish one to remember and keep. I try not to

focus on the crappy moments as much even though they are there.

Everyone has them it is just not as cool to talk about it with other

moms so most moms are show offy and talk abou thow perfect their kids

are. Not true there is always something. I hope you can be peaceful

with the way your life is. It may not be perfect but it is yours. From: in2tea4me <artheart@...>Subject: ( ) Re: Update - Sharing for the first time Date: Wednesday, May 19, 2010, 6:51 AM

Thank you Pamela and to all who responded. Pursuing the Yale followups is feeling overwhelming at this moment, but I do appreciate learning about this direction that I might pursue.

Our son is 16 3/4.

This past week has been hectic as we try to find a private boarding school that can provide the academic and life skills support that he is resistant to or are not available at home/public school. For those of you in the same boat, I have learned that we can cash in our IRAs without penalty for school related expenses. While that isn't ideal, the gamble is to maximize the chance he will be able to function independently and successfully after high school. Otherwise, our small retirement funds at ages 54 & 62 will eventually be used to cover support expenses anyway if we don't figure out a way to help him cope or compensate for the effects of AS & find secure employment. We are looking at Oak Hill Academy and also Bachman Academy if anyone here has a recommendation or knows someone who has attended either.

After he's 18, we will lose the control to find suitable options and just be reacting to HIS choices (or inertia based on who he tends to be now). My fear is that he will choose the military because he isn't able to use theory of the mind in projecting himself into the demands of boot camp, combat stress, communal living, communal showering, insitutional food, and many other aspects that , in my opinion, are usually extremely difficult for neurotypical kids to cope with. Since TV and movies are so much of a part of how he finds satisfaction & soothing in life, his perception of military reality is skewed by 1-2 hour scenarios in which life and death are completed at fictional rates & with unrealistic developments. Hollywood, where anything looks possible, further solidifies his disconnected reality between choices/actions taken today and future options. So, one of my questions for this Group has to do with whether anyone knows if the

military accepts high funtioning autism recruits. Since the dx has changed to HFA, there won't be a differentiation by the time he might enlist in 1.5 years. As for the interview at a recruitment center, I'm sure he would go alone because he would believe that I would screw it up for him. He "presents" very very well in structured male-dominated interactions that are casual and limited time wise. It would be easy for him to impress a recruiter and not project anything out of the range of normal/ordinary based on what is a stressful interview situation for any young man. In fact, I think the recruiter would be impressed as my son has LEARNED by observation how to assertively shake hands, dress, and act like a "man's man". He is able to look people in the eye as long as the conversation is comfortable to him. He says his full name as he shakes the person's hand. Adult men almost always react very positively to him, his strong hand shake, and

believe he's exceptionally mature for his age as a result of this learned behavior. He gets LOTS of positive reinforcement at church and everywhere so he has shaped it to an art! He is a shining example of how an AS kid can develop good social skills by imitation of socially approved behavior. But underneath the surface are many of the same behaviors that are discussed here and these are exhausting and worrisome, particularly as I contemplate him joining the military. I often wonder about the high number of suicides in today's military that I read about in the news. Are these the young people that, for whatever reason, can't cope with the stress and because they have an instrument of self destruction at their ready disposal, it makes suicide an easy solution. Since AS affects the ability to project one's actions as they relate to consequences in the future, he would not think of how it would devastate those left behind. My child currently does

not self advocate so it would be highly unlikely he would ask for help. Hopefully, these young adults would just act strangely and this gets them help or discharge before they take self-destructive action. But just like with bullied victims in schools, I wonder if a high percentage of suicide victims in today's military are non-diagnosed as well as diagnosed AS recruits who are high functioning enough to pass through the recruitment process. I would appreciate your thoughts or knowledge on the subject. If we do not get him into a successful boarding situation, I fear that our only child will join when he turns 18.

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Related to some current posts, I am with others who find their child just doesn't have the typical motivation to do things that are not directly related to something he/she is interested in. It's part of the bigger picture that my son doesn't seem to have as a result of aspergers:

1. Even with black and white explanations, he doesn't "get it" that stepping stones are worth taking because they lead to where success and fulfillment (that he does want) can be found.

2. He cannot experience personal value in doing something (homework, a boring chore, initiating a social activity, participating in a club are some of our examples) simply because we tell him that it would make his parents (us)feel good/soothed/helped. I suppose this could change with the passage of adolescence but because it is so consistently present, I wonder if it applies to all relationships, ?pets, bosses?

I ask, on behalf of those parents and myself, if any medications (ours does not take any), schools, specific diets, time, alternative treatments, therapy, etc have actually changed their child's behavior in either of these two specific definition areas.

I was encouraged last night when I spoke with a new friend's husband that says he believes that he had/has both ADD and AS but that he doesn't experience the same amount of anxiety or limitations now that hs is an adult. He is in his 50s and referenced that over the past ten years he has noticed the changes. His 2nd/current wife says, however that he still exhibits some maddening behaviors. She so clearly loves and understands him that it just gave me great hope, and yes HAPPY tears, as I drove home after the visit.

Thank you for reading and for continuing to be strong for when those of us are low, and perhaps not sharing anything as I didn't for more than a year.

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> On Monday of this week, after ten weeks of a supposed observation of our 16 year old son (in 10th grade)who was diagnosed a year ago with AS... the school psychologist, County Head for Spec Ed, the school Special Ed teacher, and one of the Assistant Principals with a background in Special Ed...all met with my husband, son , and myself to determine whether he will be evaluated for an IEP. He currently has a 504 plan that allows for extra time to turn in homework as needed, a separate test area if needed, and some other things that never come up. He never advocates for any of the 504 accomodations, never asks for help. He does not do ANY homework outside of school (he gets some done at school) and nothing we do can get him to do it. He will not stay after school either. He has never communicated well with us and even less as a teenager. He hates us to ask questions and if I do, he will be mad for the rest of the night and possibly the next day

too.

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> Anyway, the end result is that they ARE going to administer some tests to get a better fix on what specific learning difficulties he may have, but they said they believe that he is "choosing" to do defeating behavior and THAT is NOT a learning disability. For example, I asked if an IEP would allow the rule for out-of-school- suspension to be waived when he has more than 10 (or whatever the amount is) tardies. I explained that getting him up in the morning was difficult because of the aspergers. The COUNTY HEAD of Special Ed told me that that is not an aspect of aspergers and I firmly told her that it most certainly is. She held her ground and said that all adolescents have difficulty with getting up in the morning and that this is a behavioral issue that parents deal with all the time. Besides, she informed me that there is no accomodation with an IEP for tardies...the same rules apply unless there is a physical medical condition that causes

the tardiness. OK...am I wrong in understanding that aspergers is often associated with severe difficulty getting up and going in the morning no matter how much sleep is had? Later. she asked our son why he doesn't do his work (he is close to failing two core classes) and he said because it doesn't interest him. She , and the others, said that is not a special ed issue. They also said that a D in an Honors Class is fine because that translates into a C in regular classes. The COUNTY HEAD told us that he should choose only regular classes next year rather than Honors Classes in order to minimize stress since we expressed the belief that stress kicks in asperger "shut down" for him. It does, but it's not because the educational material is difficult in itself...it is other stuff going on in the school or classroom that is the problem we just don't understand.

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> I am new to all of this and what I learned, after a direct question about this, is that Special Ed is not there to help students maximize their potential. Though he may have an IQ in the 120s, making Cs in regular classes is fine as far as the state special ed stipulations go. He would be bored silly in regular classes and he is not tolerant of slow thinkers in normal life so I would expect he is the same in school. I called it dumbing up to my husband because he'll make Cs instead of Ds and learn even less than he is learning now. They do not seem to see the correlation that his lack of willingness to accomplish work is related to his complete inability to deal with frustration. I don't know WHY the work or perhaps the directions or the processing in some form is creating frustration for him because I'm not in school to see it and he does not communicate with us about it. It is incredibly difficult for me to see this very smart young man

with so much potential spiral down without being able to understand what the triggers are to give him tools or a way to work around them. And now, my hope that Special Ed would help him appears very unlikely since they explained that they are educational providers and only when a disability impairs the child's ability to obtain that education are they required to aid the child. Because he is doing "fine" in their estimation in terms of his education i.e. Ds in his classes, there does not appear to be a disability impacting his education. They said if he chooses not to do homework or projects, that is a choice a lot of teenagers make. I didn't bother explaining that he has a total disconnect with projected future desires and understaning how his current grades do not support those desires. The choices he is making are driven by the disabiilty itself...not his lack of motivation or desire. When I talked to him after the meeting, he said that he

wants to be pushed to reach his potential, not be average. It is heartbreaking to see the lack of control he has to reach his potential.

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> After anticipating and waiting so long for some hope...I came away from the meeting very dissapointed. I guess I expected something unrealistic in terms of public education support. Should I contiue to advocate for an IEP...if so, why? Was I completely off base here in thinking an IEP would give him tools to get the education he deserves. They also told me that a lot of kids really resent getting the IEP and being put in a class for special ed. That was the icing on top of the cake. I do think he would benefit from being in a special ed class for one period each day but now I wonder if it is a stigma since they brought it up.

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> I feel like we have no direction to head toward now and the help I thought the school could provide is not what they are required to provide by law apparently. We live in NC.

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> Thank you for reading this long story. Nothing would make me happier than to believe that his issues are just adolescent and by "choice" rather than accept the dx from a licensed psychologist that he sees every single week! We are now looking at a private boarding school that specializes in learning disabilities but the cost is astronomical. My husband is in his 60s, I'm in my 50s and we would be using all of our savings and going into retirement funds. Has anyone sent their aspie student to a private school like that? Was it worth it???? did it make a long term difference in their ability to live independently and happily? We cannot homeschool (both work)and he would not cooperate anyway. We would like to be able to visit with him regularly so the private schools we would consider would have to be within a reasonable 6 hours drive or less.

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