OCD really likes a pandemic / Thank goodness NTI has begun

G started his exposure-response therapy in December, and he had made significant improvements, but the COVID-19 pandemic has sorta thrown a wrench in that...as it has thrown a wrench in everything.

Everything has been thrown into disarray---
the routine,
the schedule,
the normalcy.

And if there is one thing OCD really, really likes, it is boredom.
Boredom means that OCD has an easier time breaking through.
There isn't enough to distract from the anxiety.

And so if you're my kid, you regress a bit, which is frustrating for you and for your family, who has seen you improve so much over the last few months.

We're doing telehealth appointments with his doctor, and I'm hoping non-traditional instruction provides him some structure that helps him level back out.

Speaking of NTI, it began today, and let me tell you, we are not gonna set the world on fire now or anytime.

But that's ok.

You know how you think that if you had all the chocolate cake you wanted to eat, you would eat it all the time.

But you wouldn't.

You'd eat it for a few meals and then quickly realize that having too much cake makes you feel sluggish and sick.

That's what all this free time has been.

It helps tremendously to have a little bit of structure back into our days.

We don't have to have our lives planned down to every second, which is how normal life often feels, but today feels like a gift to have something to be accountable for to someone who does not live within these walls.

OCD treatment, Part 1

Along with my medication, I have found motherhood to be a pretty good way for me to deal with my OCD and its incessant desire to have certainty.

There is nothing certain about motherhood, which is why I nearly lost my mind 15 years ago.
You can do everything "right" and your kid is still a mess or gets sick or is an asshole.
Also, what is "right" when it comes to parenting a kid?
Who knows.
There are no guaranteed "rights" or "wrongs."
What I do that is "right" for my oldest is a definite "wrong" for my middle or youngest.
Or vice versa.

I have become much more comfortable with the certainty that I cannot control my kids or their outcomes.
The only certainty I have is that it is all uncertain.
I have to be ok with doing what was in my power to do, even if it is not everything and even if it doesn't work.
I have to be ok with saying "I tried."

I keep reminding myself of this as G and I work on his OCD treatment.

This past week was the first in which G had homework for his OCD, and it has been a doozy.
If G defined this homework, he would probably call it torture:
He had to wear pants for 2 hours every day and tie his shoes "the standard way" and wear them 2 hours every day. (The "standard way" is the bunny knot, possibly a double knot; not his convoluted tucked and rolled travesty of shoe-tying.)

He (and I) tried every day.
Some days he could wear shoes for 2 hours and some days he could wear pants for 2 hours, but he could only tolerate uniform pants for 20 minutes tops.
And he struggled with doing both at the same time.

For someone who does not have OCD, this all sounds absurd.
"Put on pants and move on with your day!"
But there are people for whom throwing on a pair of pants is like....an ordeal.

The whole not wearing pants thing and only wanting to wear one pair of shorts is a relatively new phenomenon; last spring and summer he wore whatever.
I think middle school had something to do with it--the uniforms, the new place, the weirdness of middle school boys in the bathroom, having to change clothes for physical education class.

Some of it is his changing body.
He is in that awkward stage where it is hard to find clothes that fit.

Unfortunately, in dealing with OCD, we are making it very unhappy, which means G has been having bursts of anger and irritability.
No one likes feeling anxious, which is why the compulsions begin....to make the anxious feelings go away.
But they don't go away for long, which means the compulsions get worse and more involved.

At the moment, we're pissing G's OCD off royally.

OT free

After 3.5 years of once-a-week occupational therapy and probably close to $10,000 in cost, G has been released from care.

G and Miss Jenny, his OT

When we began his OT, he didn't yet have an OCD diagnosis so we were dealing with a lot of unknowns without any tools to help him. I didn't understand how one issue fed into the other and how difficult it would be to understand, at times, what was sensory/balance and what was OCD/anxiety. That continues to be a challenge.

I stuck with OT every week and doing the at-home assignments as much for myself as for G. Of course, it was always for his benefit, but I didn't (and don't) want to ever look back and think to myself, "I let x, y and z go. Maybe if I had stuck with them longer, he would...."

I haven't gleaned as much wisdom in 43 years as I would like, but I have learned that I don't regret anything I did although I do regret not doing things. When it comes to G, or any of my kids, I don't want to think that I didn't do everything I could, in the way of professionally-recommended things, to help them.

That is a funny line....the professionally-recommended things, but there is a very big difference between a parent doing "everything they could for a child" and doing "everything that is professionally recommended for a child."

Sometimes doing what you think is best for the child is actually not in the child's best interests. Sometimes, with a parental bias, it is difficult to parse out what is best for the child and what is best for the parent. There is a lot of ego involved in parenting. I know all too many people whose children's physicians or counselors or teachers or administrators recommended counseling or some kind of therapy and whose pleas fall on deaf ears. I get why this happens, but I also don't get it, especially when a parent simply cannot admit that their child has a problem.

OT was a headache for me, for us, in all kinds of ways. Driving to and from. Scheduling every week around his appointment. Taking him out of class. Paying all that money.

But the alternative of not doing it, of not following through, was not and is not acceptable to me.

For my own piece of mind, I need to know that I tried.

And I did try, and I did what needed to be done based on my own feeling and the professional recommendations of others who have far more knowledge than me and a larger frame of reference of what is "normal" behavior for children.

So G's "graduation" is, of course, a celebration of the work he has done in OT, an acknowledgment of how much he has improved for the better. We are proud of him and were happy to get him a cookie cake when we asked what he'd like to do to celebrate and he asked for this pretty simple thing.

But his "graduation" is also a celebration of what I have done, and what we have done, to help him.
An acknowledgment that from speech to OT to psychiatric evaluations to medication management appointments, we have done our best to use expert guidance to help us guide G to be his best self.

Let's add speech therapy.....

After contacting the district about M's speech in October, we finally got through the initial screen, the at-home interventions, the meeting to proceed with formal evaluation, the formal evaluation, and this week's meeting to discuss the formal evaluation.

I was fully anticipating him not qualifying for services, but he did.

Now I'm waiting to hear if there is a spot at the kid's school, where he will begin kindergarten in August.  If not, we will start speech therapy at a school within our cluster.  Once he starts kindergarten, he will be pulled out twice a week for sessions until next March when we see how he is doing.

In 11 years of parenting, I have done PT with N, ST and OT with G, and now ST with M.  It occurs to me that this, somehow, feels like a lot of therapy for a group of kids that is pretty darn "healthy."  Since I don't know the ins and outs of other families, I can't begin to know whether this is "normal," and I guess it really doesn't matter.

I guess maybe I shouldn't wonder and worry about the flawed genetic pool D and I have spawned and concentrate on the fact that we are aware and responsive parents who get their kids the help they need.

Maybe all of these therapies are just par for the course for a woman whose blog's purpose is as CBT.

The OT continues...

G had his 1-year reevaluation for occupational therapy.  He will continue once a week sessions for at least another 6 months, although I'm anticipating another 12 to 18 months although he did improve in 4 of 6 categories.

He is now age-appropriate for fine motor integration and bilateral coordination which is great.  He remains weak in upper-limb coordination and balance although his therapist said balance is one of the last categories to see improvement so I shouldn't be worried about it.

He shows no issues at school.  He is reading at a beginning of 2nd grade level and has scored distinguished on both math and science assessments.  He loves to learn.

His teacher commented on his report card, "I'm looking forward to seeing his progress the second half of the year."  When I saw her in the hall I said, "I'm looking forward to meeting this G kid who is an angel at school because he ain't one at home."  

I'd be lying if I said I wasn't hoping we could cease with OT.  In addition to being expensive, it is a job that falls on my shoulders, both taking him there and seeing that he does the at-home work.  But at the same time, knowing how much it has helped him, I think I would be a bit frightened to stop it.  Would the tantrums return?  I'm sure no matter when we stop, I will wonder if he will revert back somehow.

I find it always difficult to project to the future, to think of what he might be at age 10 or 12, to anticipate whether some of these developmental things will "catch-up" in time, although on a longer time continuum than other kids.  I try to remind myself that his issues are, all things considered, quite minor.

So we shall keep plugging along and see what another 6 months of therapy and maturity bring.

OT continues, therapy does not

G and I met with the therapist for the last time this week, provided things continue as they are.  We can always touch base with Ms. Stacy if problems should arise.

Sometimes I wonder whether things would have gotten better on their own, over the course of 5 months, but I don't really think they would have.  I think I had long had difficulty handling him and, unfortunately, this (combined with excruciating sleep deprivation) made me develop some pretty negative feelings about him.  My patience bucket was chronically empty when it came to dealing with G.

Therapy "for G," in conjunction with his OT, has helped both of us.  If nothing else, they have been G's "special things" that he only does with me.  An expensive couple things, but whatever.  Our relationship is much improved, and I am thankful for that. The OT really has made a big difference for him, and I really don't understand it, but he is MUCH less particular about textures and his shoes being super-tight and many of those sensory issues that he whined about incessantly.

He has begun asking to try different foods (shocking) and even trying bites of things.  This week it was roast and corn.

Yes, maybe in other people's houses their kids eat roast and potatoes and corn with ease, but in my house that doesn't happen with G.  But I can see that in time it might happen on a more regular basis.  Him taking even one bite of these things willingly is a huge win.  Ms. Carolyn, his OT gal, has been working with him for weeks and weeks on grape texture.

G is still a headstrong kid, but I have learned to stay completely detached, completely unemotional when he gets on one of his kicks (which can be really hard, although it seems to get easier the more you do it).  He gets upsets, he cries a bit, but then he settles, and it is over.  My ramped up emotions only made his episodes worse.  His "work" with a therapist was really a two-for-one, because it was me learning how to manage him.  It took her to help me figure out some of the things G needed that I hadn't been providing.  It is not my natural inclination to do these things, but I have to in order to help him manage himself better.  Eventually, he will adopt these skills on his own.

I brush him every night, which sounds really weird if you've never had a kid do OT, but it is relaxing for him and is easy for me to do.  I've really had to stick to procedures/routines a lot more firmly than I used to, which doesn't come easily for me.  I'm more lamby-pamby, but G needs that strict structure so I've created charts for this and that and the other.

I decided to retry the sleeping bag next to my bed thing, which was unbelievably unsuccessful when he was 3-4 years old.  It is working quite well now, which means I am staying in my bed more and not sharing a twin mattress with a 6-year-old who has had a growth spurt.

He had a brief episode the Friday and Saturday before Easter (which immediately reminded me of Christmas 2013, the December from hell).  It was like everything we had done, as far as he has come, was temporarily undone.  The problem?  The Easter Bunny coming, and all the anxiety that goes along with holidays for G.  He was very worked about up what he would do if he got scared in the night and needed to come out of his bedroom but then the Easter Bunny would hear him.  I told him he should go to sleep in his own bed, and I would carry him to the sleeping bag by me when I went to bed.  Around 11:30, I brought him to the sleeping bag, and I didn't hear a peep from him all night.

He has been fine since then.

So we will continue with OT, paying in full once we reach the 25-26 week limit for our insurance because I cannot consider stopping if G will continue to benefit.  We finally reached our deductible so are now only paying $25 a session, which is a marvelous break from the $85 each week that we have been paying since January.  

It is nice to take joy in G most of the time now.  To be able to look past his sometimes challenging behavior and see a smart, truly funny kid who makes me laugh.  That had not been happening with any great regularity for far too long.