our weekly letter.

[Jamieh]

I don't know if I have mentioned before that E's teacher writes me up a weekly report, as per my request, to let me know what has set off his meltdowns and all. She is very detailed in them and I really appreciate it because I take these to both his counselor and his Occupational Therapist (OT) so that they can work with him and give me ideas on how to approach some of the issues that he is facing at school. Last week's letter included that he told his teacher that he 'didn't want to live anymore' after he pushed another child down and he cried so hard because he felt so bad afterwards. He is *very* dramatic and I told her that he has said similar stuff at home when he has been sent to his room or time out. I just try not to feed into his drama and tell him that we love him and that we want him with us and there are other ways to express his frustration than that. His letter this week he told his teacher that he wanted to kill himself and started punching himself when he was unable to lie still during nap time. I honestly think that he does not really understand what he is saying and the real meaning behind it. I talked to his counselor about it and she feels the same and talked to him about different ways to express his frustrations. His Occupational Therapist (OT) thinks that it's because he is frustrated that he seems to fail at so many things like social situations and being able to be still like the other kids. She told me to make a list or give him cards with other things that he could say instead of that and also some conversation starters for him for his friends. He doesn't really know how to interact appropriately with the other kids and usually ends up invading their personal space and making noises and annoying them. I feel so frustrated and my heart hurts for him because he really does not have many friends at school. He does not understand why the other kids don't want to play with him.

 

[BusynMember]

in my opinion you should take it more seriously. Although he may not really know what it means (then again he may) that is awfully young to be talking about suicide and it means he is desperately unhappy. I don't think it's dramatic at all...I think he is crying out for help. It is a common thought for kids on the spectrum (which he may well be on) because life is confusing for them and they don't know how to fix it and it is up to professionals and interventions to teach them how to fit into our world. It is also common for Autism Spectrum Disorders (ASD) k ids to self-harm, slap themselves, bang their heads on the floor, scratch themselves, etc. This is not drama. This is total frustration with their lives...where they don't fit in. Many behaviorally different children express the wish to die. I know I thought about it, and I knew what it meant, as early as age six. If I said so, I got into trouble so I didn't say it, but I still thought about it and would sometimes hit myself in the face (I had issues too that kept me from fitting in).

I don't remember if your son is going to get a neuropsychologist evaluation, but I highly recommend one. An Occupational Therapist (OT) is not fully equipped to help him and neither is a plain therapist. in my opinion he has been misdiagnosed and although I'm just a Mom, his behavior is awfully extreme for just ADHD/sensory processing disorder (SPD). I would really become proactive and look for more possible reasons why he is so unhappy. He can learn how to make friends, but a regular therapist is not going to be able to help him with that. He is a differently wired child and regular therapist probably will not have the tools to help him. He will probably need a social skills class starting now and continuing as he gets older. Please get him evaluated. It will help him and it will help you too. Nothing is sadder than a friendless child and many of our atypical children really don't know how to interact with their same age peers and have to almost be text-book taught.

Huggggs!!!!

 

[InsaneCdn]

ADHD + sensory processing disorder (SPD) + social skills issues + non-typical behavior...
That's just too many pieces that fit the spectrum.

Are you a "reader"? I devoured books for years, and many of them had at least a few pointers that helped us.
One that we found late in the game but was very useful, was "be different" by John Elder Robinson. The author was diagnosed with Aspergers as an older adult, and has an Aspie child. It provides a lot of insight into how these kinds of kids think.

Another useful book is "The Explosive Child" by Ross Greene.

 

[Jamieh]

I have him on a waiting list to see a specialist. They are supposed to be getting him in around July. There are not many pediatric specialists in this area and the ones that are here have a crazy waiting list. I do plan on bringing all this up with- them and showing them all the weekly letters from his teacher and any reports from his Occupational Therapist (OT) and counselor. Right now they are what I have to seek support and advice.

 

[buddy]

Q would say things like that too. But I knew he didn't really want to die because he panics over symptoms asking for reassurance that he won't get a disease or die, lol.

But I knew it meant he was upset and hurting and didn't have enough words to talk about it. I never told him to stop but did have to explain in middle school that if he told people he was going to kill himself or commit suicide, people would have to respond and he would have to leave school and go to the hospital for tests. We explained why. He said, well that's what X ( girl from his hospital stay) always said. (He imitates noises and words and behaviors of others). He eventually asked me if he could talk to someone about his "worries " and I found a great therapist who works with autistic kids. But she told the director she was afraid he would hit her so they quit. He was devastated so I didn't find anyone else.

For us, it's hard to find a therapist who works well with kids on the spectrum.

 

[Jamieh]

**** on a cracker..I typed a huge long post and hit backspace and it took me back a page. in a nutshell...talked to E....now he understands death and that it's final. he had a MUCH better week at school and his letter was so great.

 

[buddy]

OMG for years my son thought if he died he could start over. ( not like reincarnation, like come back with our family, etc....but no autism )

He would say just take me to the doctor to do cpr or surgery.

He gets it now. Typical of young kids and kids who need to be directly taught so much that many just pick up.

Glad he is doing better that way! Did you discuss other words to say when he is upset?

 

[Jamieh]

We did discuss other ways to express his frustrations. I think a lot of it is because a lot of his peers are noticing that he is different. His teacher says that he constantly is in their face and cannot be next to another child without putting his hands on them. And then there's the meltdowns. I think he's noticing that the other kids are not accepting him like they did when we first moved here. Breaks my heart. But I tell him all them time that we think that he is awesome and some things are just harder for him to control. We talked him through every step of death. The stopping of the heart. We let him listen to our hearts and explained to him that his heart is what is keeping his body alive. We talked to him about the funeral/burial and the family missing the person. He seemed to understand after that. Sometimes I wish that I could just keep him home with me and protect him from other kids

 

[Ktllc]

They are books that you can read to him AND the class about "being different". Since they are not readers yet, you can even change some parargraph that you feels don't apply to your son's situation.
Young kids will accept better if they are taught about difference, specially when the difference is obvious. Otherwise, It's like the elephant in the room that no one talks about.
In V's case, "my life with autism" by Ethan Rice was a breakthrough moment. I remember our Occupational Therapist (OT) telling me that the analogy of "toasters and irons" worked well in preschool for one of her client. Basically: we are a ll toasters in this class, except for ***, he is an iron. He would like to make toasts like all of us, but it is harder for him since he is an iron, etc..." You adapt the analogy to the specific set of strength and weaknesses.
It is harder for the parents than the kids to have this kind of discussion. I was all emotional, trying to hide it. The kids were like "Oh, ok! I see now".

 

[buddy]

You are very intuitive when it comes to knowing how he needs things explained. Such a kind mom you are.

Yes it would be nice sometimes to just protect them.

Q touches and gets too close to people too. "In their space". Partly sensory, partly just poor social boundaries common in autism. He does get more desperate to be by kids and get them to interact with him the more they pull away.

Of course, it's natural that they pull away. Can't fault them for that. To this day we talk about the arm's length rule...you shouldn't be able to touch someone if you put your arm out.

Lot's of little steps daily.....that's how it goes with these guys!

Nice job!