My daughter is slipping away, help, advice please

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I know we have bad spells and then we get over them and things look brighter but it seems my daughter is doing worse and worse emotionally. She just turned 7. The past year has been hard with the diagnosis of AS after years of pediatrician concerns, referrals, and various diagnoses. After receiving the diagnosis I read everything I could, trying to educate myself on AS. I've come to realize that I need to understand why my daughter acts the way she does in order to help her.

I fought with the school for a year trying to get her accommodations and understanding of her anxiety and fears. They patronized me and said she would "be alright". Her writing deteriorated over the school year. Her anxiety became worse and worse and I thought once school was out she'd do better. Last summer she was in a day camp and did horribly. She begged me every day not to take her and they often called me when she became upset. She shadowed the counselors and if one was absent for the day she would refuse to stay. She didn't want to be around the kids at all. This summer I thought I could remedy that by getting a nanny. More like a babysitter, I found a 13 year old girl to watch her. Today was the first day.

My daughter was with the babysitter for 5 hours. It seemed to go well. This evening, though, my daughter started to get volatile and she eventually collapsed to the floor, writhing, tearing her clothes off and pulling at her skin as though she needed to get it off. This went on for 40 minutes, she was frantic and inconsolable. I ran her a warm bath with Epson and coaxed her in. I redirected her to a mirror she could look in to make funny faces and she eventually calmed.

Later tonight she was not herself. She was very sedate and serious. She was saying some pretty intense things to me. She was also saying some pretty profound things. It was very strange and eerie and out of character for her. This is the second time she has done this, another time she had a major meltdown and attacked another girl about 3 months ago. After that happened, later that evening she was sedate and saying very alarming and strange things. She said "you're not my mother". Not in an angry way, just strangely.

She has been having serious OCD behavior lately. I think this is a sign of stress. She's pulling out her hair and counting all the time. She will sometimes eat the hair she pulls.

She seems to be slipping away from me mentally. One year ago she wouldn't watch tv now it seems that's all she wants to do. She told me that tv helps her learn how to feel. She says she thinks while she watches but she appears to "zone out". She also told me she doesn't know how to tell me all that she thinks. She wants to-it's as though she doesn't know the words.

We have always been very close. Up until the last year I could mostly understand or predict her behaviors. Now she is becoming complex and more and more different. I try to connect with her on her areas of interest but she shuts me out and pushes me away more and more. I don't know if this is the AS or something entirely different. The personality differences that occurring in her are strange.

I don't have a dr that I trust. I've tried to find a therapist for her and she has seen 2 but they could not connect with her. She recently "found out" about Asperger's. She asked me what it was when she heard the OT talking about it. I've told her it is why she thinks differently and it makes her feel things differently. She understood and accepted that very matter-of-factly.

Is this just her getting older and changing as she matures? Is this a sign something more serious may be going on? She is not on any medications. We have tried various meds and all had side effects or didn't work. I'm really hoping you people more knowledgeable than me will help me either understand all of this is perfectly "normal" for AS or what I should do. Whas all of this just over stimulation from the first day with the babysitter?

Thanks, this is the only place where people would understand and where I could post this.

I'm so sorry for your daughter. I don't have any advice to give, but I too see my son slipping away more and more, also with anxiety/OCD. He is 14 and has had an AS diagnosis for about 3 years, but this year has gotten worse. I am on this website a lot now, looking for advice and answers, because I have mediocre physicians and therapists for him who seem to have no empathy for him--no genuine concern about how he does. Being his mom is so hard.

5 hours with a 13yo babysitter sounds like an awful lot for a girl who's having so many problems. A 13yo doesn't have the maturity to handle the kinds of problems your daughter has adequately.

Today I've been reading about hyperthyroid and hypothyroid because one of my youngest son's drs wants to have my son tested for those things. Problems with the thyroid can lead to all sorts of emotional problems and misdiagnoses of bi-polar disorder and all things like that. Celiac disease, which is an intolerance to gluten which is a protein found in wheat and many other grains (and is in virtually all processed foods disguised as things like "modified food starch") can also cause those kinds of behaviors. There are also mood disorders that can develop but seven is very young for that. Usually those develop closer to puberty or later.

No, I don't think that is just "normal" AS development. It sounds like something else is going on with your daughter. I hope you can find a good doctor to help you figure it out.

She needs something she is not getting. She does sound stressed. Honestly, I wouldn't hire a 13 year old for my special needs child; I never did. Shoot, my son is 13 now and I usually get adults to stay with the kids if we're out at night (in the day if I'm local I let my son be in charge). We went through a whole series of professional, adult nannies when my son was a baby to find one he was happy with - 3 went home in tears. Seriously. My guess is this young sitter isn't a good match; the only way to know would be to shadow them. When you have a child with difficulty adjusting to new people you definitely need to have a few days where you and the new caregiver are with your child together. It's an investment worth making. You either invest in solid transitions with a carefully selected caregiver or you stay home with the child. I know you often end up feeling like you are between a rock and a hard place financially - we drained all our savings in the preschool years - but you know what the goal is here, and you do what you have to do. I am sorry you are having so much difficulty and are so worried about your daughter, but she is telling you something. Live to not have any regrets, and the biggest regret you'll have is if you feel you didn't try to listen. Been there, done that, trust me on it.

Meanwhile, sit down and let yourself have a good cry. It's times like this that we really need one. Hit a few bunch of pillows; let it all out.

Then pull it back together and find the solutions.

I'm sorry, I hope I don't sound harsh, but the above is what my gut tells me. You can do this, I know you can, but you may need to make some major changes.

How are the other kids treating her?

No, this does not sound normal. I agree you should look at your daughter's diet. Gluten intolerance has been implicated in many things, same with casein (a substance in dairy foods.) Addressing her diet would be something simple to do while you try to find other help. (Take her off of all food containing wheat, barley (or malt), rye, and oats (which in the US are processed on the same equipment as other grains, and so can be contaminated.) This means she'll need to eat lots of rice, corn, and potatoes. Stay away from processed foods with multiple ingredients, especially sauces, soups, salad dressings, powdered stroganoff or spaghetti mixes, etc. (I use Corn Chex or instant hominy grits for breakfast, yellow corn tortillas instead of bread, etc.) If she does turn out to have a gluten intolerance, you can start locating the specialty foods that will make her diet more interesting - like rice breads and corn pastas, or get bags of gluten free mixes and make your own bread.

Also, I remember reading an article years ago about a little girl whose behavior suddenly started deteriorating badly. Turned out her body wasn't able to handle copper, so she was building up an overload of it and it played havoc with her central nervous system. Best of luck to you.

I started really going downhill around that age..I didn't "slip away" but my troubles seemed to get progressively worse...it had to do with being in public school what with all the bullying (started getting progressively worse)..and the sensory issues...and such...Ages 7 thru 10 were like a dark tunnel for me, but i eventually emerged a bit when I got a little older...granted..There weren't any doctors or diagnosis..I did go see the school counselor a lot and I did go home from school early or stay home from school as often as I could possibly get away with...I was placed back into the 3rd grade after having a major meltdown in the 4th grade...and also I ended up getting special leeway in some regards, but by high school I bore some resemblance to a "normal-ish" teenager...I "woke up" a bit when I reached Jr. High...

I'm sort of between a rock and a hard place, if you will, as she does well one on one and I can't afford to pay a skilled person one on one all day while I work. The 13 year old is the daughter of the school counselor who knows my daughter well. I am 5 minutes away in my office. I could literally walk there. Anyway, the day seemed to go well except for the aftermath. I don't have a network of family or friends to help me out. My mom is supportive of my parenting but my daughter is just too much for her (my mother is low on patience and short in temper). The girl is well adjusted and calm and mature. The town we are in is very small with no Autism programs whatsoever. I toured home day cares and knew my daughter would not do well with the other children at all.

It's interesting that food is brought up because I do know that she had grape koolaid today which she never has. She has a fairly decent diet and we stay away from junk food. She doesn't eat much-is 48 pounds and 48 inches tall. I've tried eliminating foods because she does have eczema but foods have different effects at different times. For instance, dairy will give her a stomach ache sometimes but not all. She doesn't eat breads much at all. We do live in a home built in 1920 which could be host to heavy metals, etc. Her lead has been tested as normal. Because she eats so little it is hard to eliminate foods. A basic diet for her might be some cereal or oatmeal in the morning, granola and turkey for lunch, and chicken and potato for dinner. She likes popsicles and will have one or two sugar free throughout the day. As I said, dairy can give her stomach aches but she does like yogurt and I have found a brand that doesn't create stomach upset.

Where would I start in finding out if there is a heavy metal, food intolerance, or organ dysfunction?

Other kids don't seem to be mean to her. They quickly learn to leave her alone or that she doesn't want anything to do with them. Most teachers or adults will engage her as their "helper" because she likes to have a task or job to do. She doesn't like mundane "play" or talk. She has the benefit of being adorably cute so people are curious of her behavior but not mean.

She has the flat voice and some curious voice characteristics but as she is only going into 2nd grade the kids are still fairly nice and accepting. I know that will probably change over time as cliques form and kids are shunned for popularity reasons.

That's nice of the other kids not to bully her.... Bullying started straight away for me once I entered 1st grade..and progressively got worse..except that after 1st grade, my teachers were slightly more compassionate..

It sucks not to have resources...My family was poor when I was young...and it was partially a matter of pride with my parents, I think...My grandfather loved to pester them about how I did not seem to be developing normally, and he might have paid for me to go to a special school or something, but he would have held it over their heads a bit..and my parents wanted to insist that I was "just fine"...and "above average" even...even though I had really bad social and self-care skills...They tended to blame the school system...I was "above average" in some ways...I was way ahead in reading and writing..and was selected to start in the gifted program once I was in 4th grade (the first time)...(it didn't actually happen until Jr. High...)
but I still had a mass of problems...

Perhaps you could try a "sensory diet"? People with Asperger's can be overwhelmed by the intensity of their perceptions - the 5 senses - here is what I have found most helpful for me, maybe you could try some ?

Weighted blanket - I would put this at the first priority. A common way to find out is whether the person likes the heavy x-ray apron at the dentist. Or perhaps you could try a heavy coat or a rug. The point is to find out if the child likes it. I would say, "I need to know if you like this, would you let me put this on you?" The relief should instantaneous, if it works, you'll know right away. If this is good, you could get a weighted blanket and/or weighted vest. I get mine here - Weighted Blankets

Ask the child what would help. Make sure she knows that you're looking for ways to facilitate her life. Ask "If there were no rules, what would make things better for you?" Ask about school & home.

Can you arrange for the 15 year old to go to classes with the child? The line of authority should be kept clear with the teacher.

What is the lighting like at home & at school? I have found "daylight" bulbs are good for me. If there are those horrible yellow rod fluorescents, replace them with growth lights. In my office, I didn't ask - it would be a lost cause - I just bought one, arrived early, stood on my desk and switched them.

Would the child like to have a pup-tent at home which would be absolutely her own, nobody can go in or bother her when she is there - it would be her safe place. Boundaries can be improved. It should be placed wherever the child likes, near the TV maybe. The idea is safe place, not banishment.

In my own experience, I tolerate irritations (light, picky clothes, sound, smells, etc) until all of a sudden I'm in meltdown and out of control. The thing to do is eliminate all these things so they can't build up.

These books might help -

Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Overstimulating World

The Highly Sensitive Person's Survival Guide: Essential Skills for Living Well in an Overstimulating World (Step-By-Step Guides)

I'm working on the sensory angle for myself. I hope some of this might help you.

It's not unsual for children with AS to have a hard time at school, summer camp, or with baby sitters.

It's not unusual for children with AS to have tantrums. And it's even not unusual for children with AS to become violent towards others (though I never was).

However tantrums for no apparent reason (in AS), hair eating, and quick personality changes are not usual of AS.

Can you elaborate more on some of the things she has said to you?

Also, she should be checked for a vitamin deficiency if she is eating her hair.

In my state the community mental health center will provide adult respite workers to help out watching your kid from time to time. It's on the states dime not yours. Here's the site for your states CMH.

http://www.dshs.state.tx.us/mentalhealth.shtm

As for the school don't let them get away with that. If she has a diagnosis they are bloody well REQUIRED to make reasonable accommodations.

In our state there is a six year waitlist for home respite care. I have been on that list for a year.

The school tries somewhat. They just really don't understand her. They gave her a pass to see the counselor whenever she wanted and she was afraid to use the pass (I think the teacher discouraged it). She hates gym (because of the sensory) but they felt she had to go which is ridiculous in my opinion.

She does seek out pressure, especially at night. She wants me to squeeze her. I started doing this after reading a book on the Sensory Smart Child.

She also has a calming place.

I'm usually very good at seeing when she is on sensory overload but this may be related.

She is not usually violent towards others. She has only been so on 2 occasions. On one occasion she was very upset that he was leaving and misinterpreted the strong feelings. She started hitting him on his back repeatedly. The second time I must say the girl provoked my daughter and was being very mean to her. She just became overwhelmed, didn't know what to do, so she started kicking and pushing the girl and screaming very loudly.

The hair eating is when she pulls out her eyelashes. It is OCD related I believe. As I understand it, OCD is part or related to the AS or is common in people with AS? She's not eating long strands of hair. she pulls her eyelashes and eats them. I don't think she's been checked for a vitamin deficiency. Would the Dev Pediatrician do that? It seems all she wants to do is prescribe meds.

She says things like "It's too late now" or "You're doing a good job mother" (she never calls me mother). Last night she said "If you were any one else's mother they would love you so much". When I ask her what these mean it's almost as if she patronizes me-pats me on the back and consoles me. This is VERY out of her normal character.