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.

I'd been wondering whether I should stay away from nutrition talk as it wasn't really the focus of this thread... but now that someone else brought it up (thanks passthepotatoes) I was thinking to say sort of the opposite about vitamins. That they should be individually tailored and each one given if the diet looks deficient -- but maybe not otherwise. Often with behavior issues vitamins are the first thing tried and I wonder if occasionally it can make it worse. Following PTPs (that's passthepotatoes) point about work-up, rather than just trying supplements, one can test folate and B12, D, and iron and zinc etc, whatever one has the ability to get tested, and then go from there. With the increasing supplementation of kid's snack-foods, cereals and breads etc, it's actually possible with an added supplement to get too much of a good thing.

I think it's also possible for people to be individually sensitive to vitamins or other supplements moreso than others. For me and DS it's B vitamins and zinc. Either is like giving us 4 cups of coffee (and we normally behave as if we'd had a couple cups already).

Here's a great website for looking up the amounts of various vitamins and nutrients in foods both natural foods and processed cereals etc.

http://www.nal.usda.gov/fnic/foodcomp/search/

Okay end of divergence onto nutrition.

Polly

high lead level: tested low

low iron level: tested about once a year, always lower end of normal to average

allergies: tested no gluten, food, animal or common ones. definitely some local environmental ones and is on claritin and/or benedryl for them. chose no further testing on this at this point since the next test is a skin prick and he won't deal well with that. Also it's not like we can keep him indoors when whatever they are are in bloom.

zinc deficiency: Not sure if this has been tested.

side effects of medications: None that we know of. He is often on claritin, benedryl and albuteral. I haven't linked any behaviors to the medicines.

sleep disorders: Due to the allergies he has some snoring, possibly enlarged adnoids. Have chosen not to go farther with this since the snoring isn't severe or often, doesn't disrupt his sleep and surgery for adnoid removal is just not something I want to deal with him with right now.

1. Meals and sleep routine are pretty regular when he's not having a bad day. He stopped taking naps at maybe 18 months, but sleeps 11-12 hours a night. Problem is he doesn't sleep through the night when he's having a bad time.

It's been raining a lot so outdoors hasn't been much of a choice, but they do a lot of running indoors and we have a mini-trampoline he uses when we can convince him too.

We need to get food in him every three hours or the tantrums get worse. Problem is he doesn't eat on command...

2. We're not big TV people. It's normally only on for little kids cartoons for a bit in the morning and then in the late evening on Discovery. Right now or main goal is getting out of the house without a tantrum and getting to bed without a tantrum. I am a STRONG believer in only fighting the big battles!

3. They eat mostly fruit, veggies and whole grains. Protein is mostly cheese, milk, yogurt, nuts. They do get one candy or sweet kiddie treat, 8 oz watered down juice and 8 oz weak chocolate milk a day and chicken nuggets and fries every so often, maybe once a week. Both take a kids multi, pretty balanced one. No fish oil though, he can't swallow pills yet and there is no way I'm going to try to spoon fish oil into him!!! LOL Is there a kid friendly affordable option?

4. My husband takes them in the morning so I can sleep in since I get up with him at night. He also takes the main role in the evenings after work. I've been working very hard on getting some evenings off, joined a knitting group, going to a concert, etc... Mother-in-Law moving down will actually take some pressure off of me when Bear finally adjusts to it. We'll have someone else we can trust to watch him.

Thank you. Back story is necessary with kids like him, it's just an encyclopedia! I do need reminders to take care of myself on a regular basis.

Grinity, I've read the website on Nurtured Heart Approach and have tried implementing it at home. So far it seems to be helping a little and every little bit counts!

Hi,

I've seen your posts many times, but I am not sure how old your son is since my advice will be different based on his age. So sorry you are having such a tough time. It can be so disheartening to have things be such a struggle. My oldest DD, 3 going on 4, went through very difficult phases and my 2.3 year old has a terrible temper, so I know how draining it can be. I never took time for myself when things were at their worst so I am glad you are making time for yourself and also having him help you sleep in etc. Building up your reserve of patience can help quite a bit. Hang in there!

Sorry, Bear is 3 years 2 months right now.

Oh, Wylkat! I have nothing to add but HUGS and sympathy! It will pass or at least fade.

You should request, in writing, an evaluation from the school district, specifying everything you think may be wrong. From age 3 they are legally required to evaluate for disabilities. Many children are brushed off, but if you make the request in writing, they have 60 school days to get it done.

You can get advice on how to do this at the Wrightslaw website or in the book From Emotion to Advocacy. Important stuff for you to know going forward.

Thanks. We've been through the district evaluation and were told that he has issues that need help, but he doesn't qualify for their aid. I was told there was nothing they could do excapt give me advice and verbal support until he got to K and got an IEP (which I was told would happen very quickly if things don't improve).

On top of all of that it looks like the insurance won't work for the therapy place we were referred to so now it's off to find some place that will take it! ARGH! Sigh....

That sounds very fishy to me: no help until K, and an immediate IEP at that point? Yes, preschool special ed services are expensive, but they are legally mandated for kids who need them. Your district is evading its responsibility.

If he has deficits in any area covered by your state's education standards for preschool (which usually include things like social communication), the district is probably obligated to provide remedial services.

Does your state have a free Legal Rights Service that helps defend people with disabilities? Or is there an educational advocate in your area? I'd be inclined to make some phone calls and get some support in getting your district to do its job. Early intervention isn't the only thing, but it matters.

Dee Dee,

I went through the same thing raising my ADHD son. This is very hard and you have my sympathy. Just remember, you will get through this and so will your son. Never give up on him; you will find that as you and he progress through this that you will need to keep adjusting strategies as he gets older. I checked out about 10 books on ADHD and read them all once he was diagnosed. They all had some good recommendations and I tried to remember the advice and apply it to my parenting style. It was hard at first because I was raised in a disciplinarian style and kept wanting to revert to punishment methods. These methods do not work for ADHD kids... You probably already know that by now.


Here is what I found effective:
1. One of the biggest things I did that had positive impact on the tantrums was a result of reading that ADHD kids have extreme difficulty transitioning from one activity to another.

2. It is best to stay with routines to help lower their stress at changes.

3. Carefully review your daily plans and discuss your plans with your son. Explain how the day will be different from usual and what your expectation is for his behavior for that situation/ event.

4. After explaining your expectations or what are socially acceptable ways of behaving for that situation, try to think of a reward you could give him if he follows your directions. For ADHD kids, immediate (same day) positive reinforcement works and delayed rewards are not generally effective.

For example: �Tomorrow we will visit Grandpa for dinner. They usually eat later in the day. There will be adults at the table. We expect best table manners. Best table manners mean ��..�

Reward: should happen same day- stop and get baseball cards on the way home or have friend over for popsicles before bedtime, etc... It is good to involve your child in setting the reward so that the reward is something that they really want.

In addition to talking to your son about changes in schedule before the day starts, it is also important to give notice to your son in advance of imminent changes in activities. For example, tell him that bedtime is in 15 minutes, he can play with friend or at park for 15 more minutes, etc.. When ADHD kids are advised of this shortly before the change, they are better able to handle the change without tantrums.

The other major thing I did with my son during his early years was to set a weekly goal for behavior/ manners, etc. I would explain to him why that goal was important and that I wanted him to work on it that week. I would then try to find several ways to reinforce that goal with activities and also give him a reward for meeting that behavior expectation. By working on one goal all week (for example- sharing), he seemed to gain mastery of that skill.

Good luck! Please let me know if you try any of these ideas and if they work for you.

They did evaluate him. Problem is he was a perfect angel that day. There's no speech delay which was what they were hoping to get him in under. The people I was working with tried to find someway to qualify him, but he's not an in the box kid and didn't fall in any of their boxes. He's not autism spectrum, no motor delays, etc... Just severe issues with change and sensory things. I was told that until the tantrums interfere with school then they can't officially do anything.

To the poster about what they did with their ADHD kid, The time warning thing helps. We've been doing that for awhile. Also we have a wall chart that lists everything we do during the day and I change it for each day. There has been a bit of improvement with that. I'd LOVE to give rewards, but up to this point they don't seem to have any effect at all on him...

This sounds a lot like how DS was when he was younger. He'll be 6 in September and he still has the occasional fit. While it's nice to not have him screaming all day the fits seem to be more intense now. He also didn't sleep through the night or take naps.

I noticed you said that he's on Benedryl. Have you noticed if things get worse when he takes it? It triggers crazy behavior in DS (as does strawberries).

I agree with the previous poster who talked about giving him warnings about when things are going to change. This seems to really help with DS. If we have to go somewhere I start telling him a while before. He can get pretty upset with transitions so he needs this. We stick to a pretty strict routine and even so I still warn him when we're about to move to something new.

I use praise a lot for DS when I catch him doing something good. I don't know about your son but DS doesn't care about any type of punishment. If I tell him that he can't read he'll tell me that he didn't want to read anyway. If I take away his toys he'll play with a stick or a rock. He doesn't care enough about anything for it to make a difference if I take it away or not.

I wish there was an easy answer for this. It does get better but I know that it's so hard. You're already sleep deprived so it makes it even harder to deal with the behavior.

What do you do when he throws a fit? I've tried so many different things. For DS it seems like the fits are just something that he needs to get out and then he's ok. He told me a while back that right before he has them his brain fills up with thoughts and they start going round and round. Then his brain hurts and I guess the fit is him trying to make it all feel better. All I know is that after the fit it's my brain that hurts

What I've been doing lately is holding him really tightly until it's done. There's no trying to reason with him because he's not really aware of what's going on around him. He'll kick and hit if he gets really mad so holding him prevents him from hurting the other kids, me or breaking something in the house. While I'm holding him I try to get him to take deep breaths and I whisper to him to try and calm him down. He said that helps him get over the fit. I think I'm going to teach him to meditate soon to see if that helps too.

I hope that you find something that works for you! I know how completely draining it can be.

The deep sensory hugs are a recognized treatment for sensory overload. There is even a device that a person can crawl into that simulates hanging in a snug blanket, created by Temple Grandin after watching cows calm down when tightly penned. a soothing voice is also helpful to us all.

Another idea for transitions is using a digital camera to take pictures of who or what is next. The pictures can be sequentially ordered as activies will occur. Could even make a game or give choice of which goes first.