Summer...we did it wrong

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So, the last two years, post real-diagnosis (as opposed to nearly-useless school diagnosis) have been pretty much nonstop therapy for DS. We've had him in weekly or twice monthly therapy sessions, and typically also in some kind of social skills class outside of school, as well as the pragmatic speech/social skills therapy in school (which, BTW - the school decided they would roll all together and do simultaneously, so the two half-hours of therapy in his IEP became a single half-hour. Word to the wise.) Past years have also included some kind of summer camp for a week or two.

I decided that we needed a break, in part to find out where we were, and in part because I'm selfishly exhausted running to all these different places and dealing with all the pushback from DS, who insists he's "fine" and "doesn't need therapy" on a good day, and who melts down on the way on a bad day because he doesn't want to admit he has bad days to the therapists.

Silly me. First of all, with the "time off," pragmatic speech and social skills have taken a nose dive. As a result, DS has ticked off one of his best friends to the point that they haven't spoken for a month even though we see them frequently, his other two remaining friends are pretty frustrated with him and aren't exactly seeking him out. He vacillates between charming and cheerful and an explosive thundercloud at home - meaning, we are on tenterhooks all the time because it goes back and forth with no warning. I am certain that once we get back into therapy, things will go back to where they were when the summer started...but we can't just leap back in, we have to wait for an opening. He's going to start a social skills "camp" for a week next week, and then he'll do that OT ALERT program, but in the meantime it's rough living, as the level of civil discourse in our home degrades...

We certainly have been far worse off in the past, and I know this is mostly because of the lack of structure and his fear of middle school, but I don't know what to do about it. I've put as much structure into our days as I can muster: he has to get up & dressed and walk the dog before breakfast, has his TV, does 15 minutes of homework, has a video game, has his 2nd TV show...and in between he fumes and frets and pokes around the house and is often beside himself.

There is a lot of unstructured time that I just can't find a way to structure, and I don't have the skills of a therapist to keep his speech where it ought to be. I'm frustrated.

Just ranting, really. Not feeling like a very good Mom these days.

You can't know until you try, right? I think it is reasonable to give "therapy-free" a try.

Because I work, my kids are forced to go to summer camp all summer long. I will have to say it is a blessing (though I do wish I could be SAHM). But it keeps their social skills from bottoming out and leaves me with only reading to orchestrate.

They made that change in his IEP without your consent? They can't do that, can they?

I am so dreading middle school. I keep thinking he can't possibly be old enough to go. And developmentally, he's not. <sigh>

The sad truth - if they don't tell anyone, of course they can! Who's going to stop them? If we hadn't hired a lawyer for a different issue, and they hadn't asked specifically about exactly how his "hours" were being administrated, we would never have known. I suppose we should consider ourselves lucky that they didn't flat-out lie in the meeting.

It only matters that it's illegal if they get caught, right?

Fortunately, the middle school "team" seemed to be as horrified by this as we were. Otherwise, I'm equally terrified by middle school...

Hey momsparky -

Our stories have often paralleled. We too have had a bumpy summer. I blamed it on all of the therapy! He was in a social skills group then camp and he seemed to have connecting meltdowns - after no meltdowns at all for a long time.

I was talking to the county special ed coordinator and she was talking about a couple of boys who had really successfully transitioned from a rocky middle school time to easy high school. She was focusing on meds and ho things got better for this one boy once he went on this certain med.

Anyway, the long and short of it was.... I asked her if she thought finishing puberty had anything to do with their successful transitions - and it was like a light bulb went off for her. She was like - yup, they all had birthdays in common. (meaning that they got older).

So, where I was completely freaking out that my son was back to meltdowns - I have decided to calm down and just muster through until he's about 14, and then start doing something different if necessary.

BTW - At this point the lady I was talking with is working with me on a completely unrelated project for my older son and her daughter, who are in marching band together. So, we weren't "working" on DS's stuff - I was teaching her how to do something and we started chatting because she had seen a particularly nasty meltdown the week before.

Good to hear from you, Kailuamom - I was wondering about you and how you were doing! (at one point, we had a really, really bad meltdown that scared the ^%$ out of me - but he kept it from being violent. Barely.)

I thought this might be puberty - the signs are there...but that means it's going to be really, really tough going for the next several years. I have always thought my son would be one of those who pulls it together in high school - but I really worry about getting us there.

I haven't been around much. Having Stanford tell me my son was definitely NOT on the spectrum left me at a loss, not knowing where I belong.

My son hadn't been violent in a really long time and just recently he flipped so bad that he gave me a fat lip. I sent him to work with his dad (who travels a lot in the summer) and started researching what to do with him. I have come to believe that no matter what dx he is or isn't, emotional regulation is an area of severe weakness. Puberty is a terrible time of surging emotions. Sending him away (a very real option), is not likely to have positive results with the surges of emotions. Once he's on the other side of that, if he's violent, he will need to live elsewhere while he gets help. For now, I think it would drive him over the top.

When he's not in a meltdown, he's doing so much better that I fear all his progress would be lost if we put him in a state of total anxiety. Therapy, camp whatever just takes so much out of him that he's got nothing left that he would usually use to regulate.

He has been with his dad for 2 1/2 weeks now and life has been heaven. I don't miss DS or DH a bit (which makes me sad). I just do my job and take care of my other son. I wonder if this is what normal people feel like? My elder DS has informed me that he can't wait to get out of this house as soon as he graduates. He says his dad and brother are just sucking the life and energy out of the house. Everything revolves around them all the time. He's not wrong.

Whoops - derailing your thread. Sorry.

Anyway, I'm back to hoping it's puberty and will get better. BTW - I remember the emotional surges with eldest too, and it passed by 14.

Nope, not derailing. I can imagine how you feel - it's so hard to be on edge all the time, to be feeling like you're responsible for keeping the sparks out of the tinderbox.

I don't think it matters what your son's actual diagnosis is in terms of posting: a lot of the things you write are helpful, and I think a lot of the same techniques apply, so maybe things parents write here will be helpful to you, too.

FWIW, we are starting an OT program (ALERT) and group for emotional regulation. I'm hoping it will help out - we've done OK so far without medication, but if he continues to have really big meltdowns that approach violence...well, he could hurt me now, and I wouldn't be able to stop him.

Wow, I really feel for both of you guys with your boys getting big enough that you have to be worried about your own physical safety. We're not there yet but man do I dread it. Before I knew better than to try to hold DS he did mess up a pair of my glasses pretty good and really rang my clock a few times though he was only about 35 lbs then. I can't imagine what it will be like when he is as big as I am, which won't be too long, I'm not very big. I hope you both find what works so you can all stay safe!

That was really a frightening moment. DS is #180. I can still typically hold him by putting his arm behind his back. (with a grab of his hair if necessary to get control). However, I had surgery on my right shoulder on June 5' (im right handed) My right arm was immobilized due to the healing process. There was no way I could hold him.

Fortunately (and surprisingly), the lady that was at my house is the trainer for the county, on how to safely restrain. She had never been to my home before - it was totally random and so lucky.

I have never really been afraid of my son because I felt that even though he's big, I can keep us safe. Right now that's all changed and frightening. I still feel like, if we can just get him through the next couple of years, he should have more control. But if we can't come up with an effective safety plan, the decisions will be out of our hands, because I will not live in fear. He will not be able to live with us.