I'm back. I wish I could say I was doing well.

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First, I'd like to apologize for my hiatus, in case anyone noticed. There was some difficult communication here for me, and I just didn't have the resources to sort it out. I have done the best I could in that regard, even though I recognize I may still have messed it up. For the record, I was not trying to be sulky even if it came off that way (and I don't think anyone else involved was either;) It is hard having no clinical support for myself and having to navigate communication breakdowns as an adult while I am focused on trying to help my son, and sometimes all I can do is walk away.

Second, I was waiting to write a glowing post about how well middle school is going for my son, but I was waiting for the magic date of Halloween - every year, things look positive until then, but we invariably have some kind of falling apart before the holiday, and this year apparently is no exception.

So, I'll write about the positive first. First of all, (recognizing this doesn't sound positive, but at least now I know I wasn't crazy) I am just now realizing how pissed off I am at my son's elementary school, and how glad I am we brought a lawyer to his IEP meeting, even though it cost everything we'd saved for that "big family vacation" which now may not happen for, possibly, ever. We discovered first of all that his pragmatic speech scores were the same in the school eval in 1st grade (no therapy) as they were for our private eval in 4th grade (therapy - but 2 years after he demonstrated a need.) We also found out - word to the wise - that the half-hour of speech therapy and the half hour of social skills class he'd he'd been awarded in his IEP were being combined and delivered as a single half hour once a week (lawyers caught that.)

However, whether it was a result of having lawyers or whether it was a result of the middle school being more on the ball (which I think is more likely,) we are finding his current school is doing a great job of meeting his needs: nobody is giving us a hard time about accommodations, and any problems he's had are immediately taken seriously and resolved quickly. DS is suddenly figuring out that academics are not just random torture invented by an arbitrary system but that he can actually work and do well and learn things that will get him where he wants to be - and that is an incredible gift.

Unfortunately, after school is someplace they have no jurisdiction. We had given DS a cell phone with text capabilities when we realized it was an important social tool, but I don't think he was ready for it. Unfortunately, a female friend now at a different school had given her his number. One of his schoolmates who had had a crush on this girl in the past extracted the number from him. The friend proceeded to send obscene texts to the girl, and the last time DS was "hanging out" at this kid's house, he convinced DS to do the same.

DS, of course, is not as good at covering his tracks as this NT boy. He didn't delete the text, despite knowing our rule: we explained early on that all texts are public and therefore we would read them; we agreed that voice phone calls were private (I told him the horrifying story of Amanda Todd by way of an explanation of how online information can follow you offline.) When we confronted him, he initially said the other boy told him to do it, then when I went to call the boy's mother, he backtracked and tearfully said it was his own idea and all his fault. Complete meltdown - I thought we were headed to the ER again.

I called the other boy's mother. She asked the boy about it while she was on the phone, and he said that he'd told DS to text "hi," and DS was the one who took it to another level (we have had other experiences with this boy playing with the truth in order to put the blame on DS.) The mother, of course, took her son's side.

So I called the girl's mother, mostly to apologize, explain that the text was from DS, and that her daughter was not being stalked and it was just stupidity, and we had taken away DS's phone for the time being. Fortunately for all of us, the girl had wisely given out her mother's cell phone number instead of her own; and her mother had assumed it was just random spam. More importantly, she said this was the first text from DS's number but that there were a number of texts from a different number, which she didn't quite remember, but the numbers she could recall were similar to my son's friend's number.

I called the boy's mother again and relayed the new information. She basically asked me to prove it. (I did follow through on this, fortunately the girl's mother had saved one of the texts.)

I am not sure what will happen at school today. This kid has a history of successfully using DS's diagnosis to make him into the bad guy. (DS knows he violated our text rules, and now knows he did something wrong and we did discuss consequences with him, but there's more going on here than just that.) Both DS and I are terrified.

In a different situation, which is less scary than this one but not really less hurtful, our neighbor's son got angry at DS during a pillow fight and basically has given him the silent treatment since June. Prior to that time, this kid was one of two kids DS could trust with both his disability and the only kid he's ever talked to about his problems at school - the kid is trustworthy, but gets frustrated easily. I think he feels like the AS diagnosis (my son decided to share it with him very early on) is an excuse for bad behavior, and he feels like no matter how things hash out, everyone will take DS's side because of the AS.

His parents finally came to us, and we met over coffee to figure out a strategy to at least have civil behavior between the two of them. We talked about how to help this boy understand that, even though DS has been acting different since long before there was an explanation, his outbursts aren't deliberate. We also talked about how we want him to know that we don't consider AS to be an excuse for bad behavior, and that DS does get held accountable for hurtful behavior. The parents finally said that they would do their best to get their son back to civil behavior, but that he will probably never want to be friends with DS again...and I realized that that was the best we were going to be able to do. At least the parents are trying to help.

It really struck me that we can do therapy, we can do social skills training, but the truth of the matter is that DS is not playing on a level field and this kind of stuff is going to keep happening to him until he's an adult. It is killing me that I know we are doing everything we can to alleviate his pain and he's still in pain.

I'm also having a really hard time, myself, with this transition to middle school, most days I can barely get out of bed and I'm letting a lot of responsibilities go by sitting on the couch mindlessly watching TV. Paralyzed. I am doing my best to participate in the ways that are available, but starting over with a whole group of mostly new people is really painful. I really want to hide in a hole somewhere until it all goes away.

Thanks for reading.

I am so sorry. You have such excellent posts and useful advise. You were definitely missed.

I do not have anything really helpful to say because we have not yet entered the treacherous waters of middle school.

I just wanted you to know I hope things will settle down once you all get used to the new school.

So glad to have you back! I was worried that something had happened either on here or with your family. Sounds like you do have a full plate of tough stuff to deal with. I am sorry to hear about all of that. I think that no matter what happens, your son will know how much you have done for him and how far you always go to help him and in the end, that is what he will remember. Yes, the pain of growing up with AS will be there but your love for him and your consistent striving to do the very best for him will help him become a good man, of that I have no doubt! Take care of yourself as best you can and please stay in touch!

Agree. You have had some very helpful advice on here. Sorry things have been so rough. Just want to say reading how things have been for you is actually slightly encouraging . . . A) Nice to know others feel as lost anddiscouraged as I do sometimes. I mean, we are not 'alone' in our wallowing on the couch not even knowing what to do next.
B) My son is only 5 . . . so the reminder that this is a journey that takes well into adulthood to really see ccomplete progress is somehow relieving when I feel we are having setbacks.
Sounds like your son is experiencing that typical 'too trusting' of a friend situation. And he may not be picking up on that friend using him to have fun at his expense. Hope it's sorted soon~
My brain is fried today. Better stop now.

I got your PM but havent had time really to sit down and word a thoughtful response. I will respond. My younger DS (17) Cut the tip of his little finger almost off moving a refrigerator while he was helping a friend move) and we had to deal with that and then the surgery and all that, plus I have marriage and financial problems, depression and I'm out of my meds etc. But I will get to your PM. I promise.

I will say this. My mothere and grandmother were all up in everything, calling other parents, teachers, etc when I was a kid and it made things worse for me. Let me add that I used to do the calling other parents and teachers etc thing myself with my first two kids. It just felt like the right thing to do. As a parent we should do everything in our power to make things better for our kids and looking at it through the adult lens, it seems to be the right thing to do.

It can be if the kid has the occasional problem.

When the kid has chronic problems, like I did, then calling the parents just adds to the difficulties for the child. If you don't think the kid knows you called, then you're not in touch with how it works in most families. If the parent doesn't go to the kid and say "So and so's mother just called and you're in trouble for x" then they will either overhear adults talking (snooping on them) or put 2 and 2 together and it makes your kid the tattletale. It also makes your kid the one whose mother has to fix stuff for him, thus taking away from any growing up or responsibility or maturity that he has just learned. I know this from experience.

I do not know your child or the level of autistic that he is. I only speak from my own experience and my own life and also from anger toward my mother and grandmother for how they overprotected me and kept me from doing what I could do. I wasn't ever "released" from their care. It was a mutiny and I took over my own care despite my mothers pleading sthat I couldnt, would get hurt, laughed at, they wouldnt like me, etc.

Some of what you have said in your post makes me think of clinical depression on your part. I have it. I know just how you feel. Whats the point? Why should I do this? Who even cares? etc. I feel that way so much when I don't have my meds. Meds are a Godsend to me. I don't have them now cause my hsuband is too sorry to go to work every day and give me the money for the doctor to get a refill and also my meds. So, there ya go. He wasn't always like this though. I'm leaving him as soon as I can financially do so. But that's neither here nor there.

I want to say, please, please talk to your doctor. Depression isn't always just sadness. It can be apathy as well. Please ask him to give you a script and try it. It takes a month usually before it's kicked in fully. When it does, it's wonderful. However, a word of warning. I had to go through so many meds before I found the right one. It's a crapshoot. He will prescribe his favorite and then wait and see if it works for you. If it does, great! If not, do not give up! As him for a different one! Try it as well. Keep trying until you find the right one, or combination of one. Trust me, it is a life changer.

Please don't take what I said about my life and my suggestions about how to deal with your son as mean. I do not in any way mean them that way. I can only speak for me. Good luck and please don't be angry or hurt with what I say. I'll also answer your PM this evening, I'm pretty sure.

Thank you, Francis - I didn't take anything this way.

I didn't call the other boy's mother to protect my son, really - but because I'd have wanted a call if someone found out my own son was harassing a girl. I think it was innocent stupidity on DS's part, but I'm really not certain of the motives of the other kid.

Apparently things went very well for DS at school, (in no small part because the school was really, really supportive and made sure the psychologist saw him!! !) He took it upon himself to actually talk to the people who reached out to him and tell them what he needed (he wound up asking the psychologist to distract him by talking about video games!) He's a good kid, I feel really lucky.

The other boy's Mom and I are not doing so well, and have basically decided mutually (for different reasons) that our kids won't be seeing each other outside of school - and our (somewhat distant) friendship is pretty damaged. I mentioned to her that blaming DS - and sometimes other kids - when he gets in trouble seems to be a pattern of behavior, and that doesn't feel safe to me.

I've been talking with my husband about meds (sorry to hear about yours.) I am having some minor surgery soon (nothing serious, a female issue - but it will change my body chemistry - hopefully for the better) and I don't want to risk meds at the moment. You are right, I am struggling with serious depression. I've had pretty bad experiences with meds in my past - although admittedly that was back before the good ones came out. However, I am the queen of side effects; it's scary.

I also am realizing that I just need help with the social stuff, somehow. It hurts.

Momsparky. Glad to see you back. I miss your words of wisdom and understanding as my son is at a similiar age and grade (11y.o. 6th grade). I struggle with my own depression and feelings of inadequacy. Please know we (at least I) am always glad to see you around even when you don't have the wise words or answers.

Know what broke me from calling other parents? When a friend of my daughter's mother called me up to complain that my daughter had put something ugly about her daughter on MySpace. Yeah, MySpace. years and years ago. Well that phone call escelated and it was a shouting match and because the b*tch lived two houses up from me, it turned into a girlfight in the yard between me and the girls mother. After that, they were our spitsworn enemies.

For a freaking day.

Then the girls were best friends again. Now me and the mother have to live here and hate each other.

Funny thing was see, she called my daughter a ho. Because my daughter's bf was living with her. They were 14. Well so what? Her older daughter had a baby when she was a junior in high school and she didnt know who the daddy was. My pointing that out was what caused the fight. The original girl, the one my daughter was friends with, she also had a baby and doesnt have a baby daddy either. My daughter is in college and with the same boy. Her daughter quit in 10th grade. My daughter got a formal proposal on a cruise he took her own when she was 17 to Mexico, Jamaica and the Cayman Islands. Her daughter is now a KNOWN ho.

Aftier that I figured out that it's best to stay out of kid's arguments.

I reread your post again and this comment really hit home:

"It really struck me that we can do therapy, we can do social skills training, but the truth of the matter is that DS is not playing on a level field and this kind of stuff is going to keep happening to him until he's an adult. It is killing me that I know we are doing everything we can to alleviate his pain and he's still in pain."

I think this is one of the hardest things for me to come to grips with.

I should point out, though - because this is a delay, not a full-stop, I do believe DS will be OK once he is an adult and he can catch up. I hope I can keep him from becoming cynical and giving up on people before that happens.

And, having been through life with zero help - I can see how the therapies and supports (and having parents who are supportive) DO help. DS is having a much easier time in middle school than I did - he does have some friends, he does socialize (I had none and didn't. I did survive even then, albeit with scars.)

It's just that for him, school will never be the kind of experience that so many kids take for granted as just another part of life.

momsparky
I have thought the same thing. DS will eventually be an adult and if we can just get him through this growing up thing without too many scars, and hopefully with some life skills, he will do fine. Our kids will remember how much we supported them just the way you remember how little your parents supported you so they will hopefully have fewer demons to wrestle with when they are adults.

I often tell myself, it is a delay and does not mean that is where he will always be. On the other hand, I read posts from other people with AS and I realize that there is inherently an underlying difference that is not "just a delay" and which he will have to come to grips with and accept and love in himself or he will always be at war between who he is/what he is like (loveably quirky in my eyes) and who he wishes he was/what is different about him. Right not, my son just wants so much to be like everyone else (which I know is a developmental stage of early adolescence), and I just want him to see how truly wonderful he is by NOT being like everyone else.




I agree, but how do we help them, other that the therapies, and reasurrance?

On those really bad days, it's really hard to keep from feeling hopeless. I fade in and out of hope and hopeless and am so sorry you are in it now.

However, it's important to remember that we are all breaking new ground here: autism is now a known quantity, there are lots and lots of supports and therapies, and we just don't know what the outcome will be. Most adults with autism have grown up without the level of understanding and support our kids have access to now.

Just you knowing that your son is lovably quirky is a huge leap forwards: many kids grew up like me, being told we were "just not applying ourselves" or that we were "being overly dramatic," or "a big baby."

Keep the faith. It will be ugly for a while, but I believe your son is going to be OK - in no small part because you are there for him.

thank you and I apologize for taking over your post.

Not at all! I'm really glad to be back and to remember that there are other parents going through the same things I am going through! I wish I had more support to offer.

Things get better. All the things we've done for our kids DO make a difference. Will they ever be on the same playing field with certain things taken for granted, as it is with other kids? No. I never stop seeing evidence of that, no matter how great my son does. But the thing is, my son is at a place where he doesn't care, and he is mostly content with the life he is making, so why shouldn't I be?

The hard thing is when kids can't reach that place of contentment, of course, but that is a tough place for ANY child to reach; it isn't unique to AS.

momsparky, you are still a few years behind us, and I hope that you'll see the same light at the end of the tunnel that we started to see around the start of high school.

Our own moods - that is tough. I do work on mine, because my kids need me to be healthy in all ways, but I still struggle with it.