1 step forward, 2 steps back- how common is it?

[JTsMom]

Hugs to you! You are a GREAT parent and doing the very best for your child!!!!

We have a grade school age child who struggles with "severe anxiety" (along with other things). The ONLY thing that seems to work is completely clearing DC's schedule. I was panicked to stop therapy, outside OT, social groups, ect. However, DC was begging to stop eveything! So DC chose one activity to keep and the rest we just took a break from. It's been about three months and we have seen MUCH improvement. Clearing the calendar seemed to help DC, however, who knows if it was just timing (the school implemented an IEP about the same time) or what. Now we are starting to add things back in as DC wants.

I don't know what your daily calendar looks like, but it might be worth a try.

Of course, my DC could also slip back into multilple daily meltdowns any minute...

Best of luck and hang in there...

Thanks. I'm glad something is working for you guys!

Our schedule is shockingly empty right now. We homeschool (b/c of all of these issues), so we can work around bad times/days. We're out of all types of therapy- we were discharged b/c we weren't making enough progress. We aren't doing an extra-curricular stuff b/c of the terrible behavior. We've tried in the past, but it never worked well, and caused so much stress it wasn't worthwhile.

We did have the big party, and I know that threw us off our schedule for a while, plus we had out of town company, and that always creates upheaval, but now that it's all over, things still aren't improving.

Before this latest backslide started, things were going so well that I was considering public school for 2nd grade, and was thinking about starting some activities for summer. Now, it's so bad, there's no way I'd consider either. It hasn't been this bad in a long time- probably 6 months or more.

[brittone2]

Lori, no advice, but I wanted to say hi and let you know you've been missed around here!

[pastrygirl]

My son seems to go through cycles, too. We don't have any formal diagnoses or plans in place yet, but I already see how he progresses and then regresses. I haven't figured out what makes him regress. He starts OT next week, with a focus on behavior. I really hope it helps.

[Gena]

It hasn't been this bad in a long time- probably 6 months or more.

Just brainstorming, but could it be related to seasonal allergies? change in weather? or maybe a growth spurt? DS's behavior becomes more difficult just prior to a growth spurt, then seems to settle down afterwards.

His behavior is a nightmare. It has always been far from average, but the older he becomes, the more it stands out.

We have this too. Even when we see DS making good progress, he continues to look worse when compared to typical kids his age. Typical kids just develop at a much faster rate than DS does, so he starts behind and falls further behind. So when we just look at where he is compared to his peers, it looks like he keeps getting worse and his autism has become more obvious.

[JTsMom]

Lori, no advice, but I wanted to say hi and let you know you've been missed around here!

Thanks Beth! I miss you guys too. I've been popping in here and there, but not really posting as much.

My son seems to go through cycles, too. We don't have any formal diagnoses or plans in place yet, but I already see how he progresses and then regresses. I haven't figured out what makes him regress. He starts OT next week, with a focus on behavior. I really hope it helps.

Good luck!

Just brainstorming, but could it be related to seasonal allergies? change in weather? or maybe a growth spurt? DS's behavior becomes more difficult just prior to a growth spurt, then seems to settle down afterwards.



We have this too. Even when we see DS making good progress, he continues to look worse when compared to typical kids his age. Typical kids just develop at a much faster rate than DS does, so he starts behind and falls further behind. So when we just look at where he is compared to his peers, it looks like he keeps getting worse and his autism has become more obvious.

Hmm.. all good thoughts, Gena. Maybe a growth spurt? But the fact that it's been going on for several weeks has me wondering if the current plan just isn't cutting it. When you've successfully ridden out the low points, how long would you estimate it has taken?

I really need to get him into his regular ped. She's the one who set up all of the supplements, so maybe she'll have some ideas.

[pinkmomagain]

Lori, what is his sleep like? Does he get enough restful sleep? Also, does he eat well? I know that he has some restrictions with Feingold, but does he have a good appetite and eat until satisfied? Just brainstorming, as I am still shocked at my children's behavior and mood if tired or hungry. I remember that when dd2 was younger (3-8yo) she would often be hungry but not come out and say it or ask for food.

[DrSally]

Hugs to you. I do think that behavior/emotions are sometimes cyclical and start for no good reason. I known that doesn't help much. I hope better days are on the horizon soon.

[Gena]

Hmm.. all good thoughts, Gena. Maybe a growth spurt? But the fact that it's been going on for several weeks has me wondering if the current plan just isn't cutting it. When you've successfully ridden out the low points, how long would you estimate it has taken?

It varies. Sometimes weeks, sometimes months. The last setback lasted about 5 months. In that case it was due to the school's disastrous attempt to mainstream him. It took several months to get him moved back to the autism classroom. Even after the change in placement it took another two months or so to get his behavior back on track. But then he made some great progress right before the end of the school year. Environmental changes have a huge impact on DS, so I'm really anxious about how he will do at his summer program.

Finding the right balance of supplements is a challenge too. Every time I think I've got everything he needs in the right doses and timing, he will do really well for a while. And then things will start to deteriorate and his behavior falls apart again.

Unfortunately, I can't always separate out what is do to supplements and what is do to environment and what is simply due to DS's frustration with how hard it is for him to process the world around him.

[JTsMom]

Lori, what is his sleep like? Does he get enough restful sleep? Also, does he eat well? I know that he has some restrictions with Feingold, but does he have a good appetite and eat until satisfied? Just brainstorming, as I am still shocked at my children's behavior and mood if tired or hungry. I remember that when dd2 was younger (3-8yo) she would often be hungry but not come out and say it or ask for food.

He seems to sleep pretty well. Sometimes it's hard to get him to go to sleep, but once he is asleep, he sleeps for about 11 hours or so. His eating is definitely less than ideal, which is one reason that I would like to eliminate at least the GFCF diet, if it's not helping. Feingold is easier to work around, imo. He definitely flips out when he's hungry, but this behavior is non-stop, every day, for weeks straight. He wakes up this way, and goes to sleep this way. He's much slimmer (he was about average before- more like 25th percentile now) now than he used to be, which is another reason I'd like to avoid stimulants if I can.

Hugs to you. I do think that behavior/emotions are sometimes cyclical and start for no good reason. I known that doesn't help much. I hope better days are on the horizon soon.

Thanks!

It varies. Sometimes weeks, sometimes months. The last setback lasted about 5 months. In that case it was due to the school's disastrous attempt to mainstream him. It took several months to get him moved back to the autism classroom. Even after the change in placement it took another two months or so to get his behavior back on track. But then he made some great progress right before the end of the school year. Environmental changes have a huge impact on DS, so I'm really anxious about how he will do at his summer program.

Finding the right balance of supplements is a challenge too. Every time I think I've got everything he needs in the right doses and timing, he will do really well for a while. And then things will start to deteriorate and his behavior falls apart again.

Unfortunately, I can't always separate out what is do to supplements and what is do to environment and what is simply due to DS's frustration with how hard it is for him to process the world around him.

The enviornmental stuff I could absolutely see causing a huge recovery time. The supplements are more confusing to me. I never know how long to try to wait things out.


One thing our dev. ped. had suggested as a possibility is treating the anxiety and seeing how far that would get us. A lot of times, it almost seems as though he's having a fight or flight response. He worries about a lot of random things- something he'd seen on a (preschool type) TV show, lights on his TV, etc. He'll often say things like, "You'll never take away X!", for no apparent reason.

I've talked to him about what anxiety is, so he knows a little about it, and sometimes he'll say, "I just can't make my brain stop thinking about X!"

One other reaching theory of mine is that he got a Leapster for his actual bday, which was within a day or 2 of when the behavior changed. You don't think that could cause this level of change, do you? Screen time does seem to affect him, but not like this, unless it's a crazy amount of it. I will say that with the party prep, he was getting more than usual, on top of the Leapster, plus we were doing less school on some days.

Thank goodness everything is settling down now- maybe I should just stay the course for another 2 weeks?

[MamaKath]

Wanted to send hugs! So frustrating to deal with! We continue to deal with this trend, though it seems the older he gets, the more coping mechanisms seem to stick and we see more consistent progress. We have done lots with diet, with allergies and food sensitivities, etc. I will say if you think anxiety is a component, maybe delve further into that. We are finally dealing with ds's anxiety component through CBT and it is making a huge difference in his coping on a daily basis. This seems to be were we have seen the most improvement in recent years.

Side note, ds is on restriction which means no screen time for a bit. Huge positive change in behavior! He seems fine if he obsesses over a book, just not as much when he obsesses over a game or show. Unfortunately dh doesn't recognize this and so days when I work/he homeschools this is his standard reward and ds can't unwrap his brain from it.