Gifted Issues Discussion homepage Forums Twice Exceptional Need advice/help/a shoulder to cry on please

My mother-in law has moved up (a good thing) but that and some new friends in our life (ie change), a home visit preschool teacher, and a sudden dislike for ALL the OT things that were helping him has made Bear regress and even get worse than before (if that's possible!!!). He's not sleeping through the night again, fighting bedtime, tantrumming about leaving the house, saying to to everything and meaning it. He even fell asleep saying "NO" at the end of a tantrum the other night. Then he woke up later with a nightmare and fell back asleep chanting "NO". He's back to hour + tantrums on a daily basis and now he's starting to throw things and hit, but only mom and dad and only during tantrums.

Good news is we finally have the insurance to afford official OT and have a referral. Bad news, odds are they will have a wait list. Other good news is we have a referral to a child psychologist. Bad new is they DO have a 1-2 MONTH wait list.

The home visit preschool teacher has agreed there is no way we could place him in regular preschool at this point and the school district says there isn't enough wrong with him for them to help him, although if he goes to K like this I was told he'd get an IEP very quickly.

The worse he gets the more he fights the OT. The less OT we can do the worse he gets...

Any suggestions, support, commiseration?

((Hugs))

You know my advice - LOL! I've been using the Nurtured Heart Approach for about a year now with DS13, and I can't believe how much of a change there is in him. Of course it could just be 'maturity' but you know how it is - some of his 'stuff' had been like that since preschool.

Here's a previous post about it
My next advice is to take excellent care of yourself during this stressful time. I really think that my DS, especially in the preschool years, was sort of boundryless with me on the emotional level, so when his behavior got out of control, I'd get scared and sad and act different, and then he'd get even worse.

Let's count blessings:
He isn't in school now, and doesn't need to be.
You have insurance.
You have the referral.
2 months is a long time, but it will pass.
In most places, the weather is getting better and more outside time is possible - that helps everything.
As the schoolyear winds down you may be able to find an older child to 'come play' with Bear on a regular basis, perhaps as part of a community service project?
We are here, so pick one key area to work on for a week or 2, post all about that area you'd like to impact, in full detail, and you get some fresh ideas.

Advice - if you are up, and have a minute, give a midnight cuddle and tell him some positive things about himself while he is half asleep. Be strict with yourself to be 100% only positive during these nighttime visits.

Advice - try and use humor as much as possible. Start some silly routines to lighten the mood. Dig out a favorite music recording and play it more. Get Bear to brainstorm a happy list with you. Praise him every time he doesn't resist the slightest thing, even if you have to take him to the slide at the playground, wait until he's pushed himself off the top, and say: "Slide Down Now!" - then at the bottom you can praise him for being so obedient and doing exactly what Mommy wanted!

Hugs and More Hugs,
Grinity

LOL That might be what it takes!!! I do try to dump praise on him every time he doesn't say no. Those moments are just so few and far between. I also make sure I tell him how cute he is and how much I love him, even when it is hard to work with him.

I really appreciate all that you wrote. I've been meaning to find some time to look into that approach that you've talked about so much. Maybe this is the kick in the butt I need.

My son was similar at that age. OT and the psychologist helped a lot, but the waiting period for the eval and treatment start seemed like it took forever!!! But once we got started, everything clicked like a textbook case. And it is a longterm, ever changing process. We are now waiting for "new" OT to teach DS7 strategies for a 7 year old since he is relying on the strategies he learned as a 4/5 year old and they are no longer effective! He dropped flat to the floor screaming at school yesterday because he couldn't find his water bottle...
I use the night-time praise and snuggle also; but I thought it was just to make me feel better...I'm glad to hear it might make him feel better, too!! You will get through it Nan

Wyldkat, if you are having a difficult time finding those moments to praise him... try praising just as he began something. For example, just as he is begining to sit down for dinner, say "sit down please". As his pockets touch the chair, say "Thank you for listening so quickly!"

It's a little tricky but it works

LOL I told him thank you for using your words and his response was "No I'm not".

I really appreciate the support. I know I'll get through it, it's just so.... well, argh!

I'm just curious if the whole hour of tantrum he is unreachable and out of contact with you, yelling/screaming/kicking etc, or whether it starts and stops for the hour or ?

With such long tantrums, what happens if he's in the middle of a tantrum and you absolutely have to leave the house (and take him with?) Does he tantrum all the way to wherever and into wherever you are going or does he calm down?

An hour is such a long time -- poor kid and poor everyone! How hard it must be to keep your own calm...

Polly

It depends on the tantrum. Sometimes it's constant screaming/anger and sometimes it will calm down to fussiness on and off.

When we have to go out and he's tantruming it depends on the day as to what happens. Sometimes he calms down when he hits the car. Sometimes he calms down after we drive a bit and sometimes he keeps going through the whole process.

It is stressful, but I've sort of gotten to the point where the crying doesn't bother me TOO much. Mainly it's the difficulty in accomplishing anything that gets to me.

That sounds really promising with the tantrums, it's not always a situation where there is no other option but for him to totally exhaust himself ranting. At least sometimes he's capable of seeing what's going on around him and switching gears. With that ability eventually he'll be able to switch gears himself instead of having to have his gears switched by an external force (as in you carrying him out the door). (Like in a few years, "mom everything is getting to me, I have to go for a walk" (sound of door slamming).)

Our funny thing lately, speaking of the NO NO Nos, is DS hates both diaper changing and the whole idea of the potty, it's been going on a couple months where neither is a workable option. He will go around saying, "I need a new diaper. NO. I don't want a diaper. I hate diapers. No. I need a diaper. I want a new diaper. NO" etc. One day I said, "Say: "I'm conflicted". So now once in a while during the diaper talk he'll add in, "I'm SO confwicted". It's just so darn cute it makes me not mind as much that it takes 40 minutes to get a new diaper on.

Polly

Sorry for not knowing the whole back story, but I'm wondering if the pediatrician has eliminated medical causes such as: high lead level, low iron level, allergies, zinc deficiency, side effects of medications, sleep disorders, etc. If he was my kid I would want a full work up before I concluded it was all behavioral or sensory. I'm concerned that far too often kids are sent to OT and parents are told to work on discipline, while underlying physical causes are not being tended to. You can be the best parent ever with the best sensory diet ever but if your kid has an underlying physical problem it won't fix it.

It is great you are getting referrals. Get on the lists as fast as you can and time will go by.

My daily survival suggestions are:
1. Routine, routine, routine. Try to get his meal and sleep times as predictable as possible. Much of what you are describing could be tiredness related. Kids with sensory problems are often poorly regulated and they will not be able to develop routines on their own. Encourage a daily routine that includes specific periods for outdoor hard exercise. It is better if these don't come very late in the day.

2. Focus on just a few significant behavior problems (like hitting) and let everything else go as much as you can. Remove as many distractions as you can. Keep the TV off, reduce noise. Remove problem items from the house. Be as positive as you can and don't fight little battles.

3. Clean diet. Eliminate processed foods and sugar. Get him on a good multivitamin and fish oil supplement if at all possible.

4. Get some break for yourself no matter what you have to do to make that happen. You need to remain sane.

So, in other words, basics -sleep, exercise, food. Very simple and consistent expectations. Remind yourself while it may not look like it he's doing the best he can. Empathize with him when it doesn't work out.