October 1, 2018

Cycles

Posted in Life's Little Moments, My Take on Autism tagged , , at 1:30 pm by autismmommytherapist

As many of you know, we have been having a really difficult time with our severely autistic fifteen-year-old for about a year now. We have been to a myriad of doctors and received a multitude of diagnoses, and finally believe we have found the right one, and a treatment plan that is at least working a little bit. At this point any progress is good progress, and my boy seems to be relieved a bit from the tics/stereotopies he’s been diagnosed with recently. This has brought him relief, and his family as well. He is eating better, sleeping better, able to transition better, and much easier to take out into society, which has been a focus for this family since before he was diagnosed.

I’ve finally had some time to reflect on the past year, what I’ve learned, what I wish I’d done differently, and I’d like to pass on any wisdom I can to other families going through difficult times, especially when adolescence comes to call. On that note I was so enmeshed in watching my son struggle the last twelve months that I forgot something, something integral to all of us trying to remain hopeful in the face of seemingly unsurmountable struggle.

And it’s this- I’ve been doing the autism mommy gig for fifteen years, and literally everything has come and gone in cycles.

Over the past decade-and-a-half we’ve dealt with sleep issues, eating issues, behavioral issues, leaving the house issues, riding in a car issues, and probably many more conflicts I’ve blocked out over the years. At least for me, when I was right in the middle of each situation my greatest fear was it would never be resolved- he would never eat enough or anything that wasn’t fried, we’d never be able to take him out of the house and not have it be a disaster.

Many nights I worried I’d never get a full night’s sleep again.

I have my priorities.

But the truth is, over time, with many different strategies, patience and often multiple opinions we were able to conquer these challenges one by one. Sometime things would not go away completely, but in every single case the situation was greatly improved. In my experience, and that of my friends, things tend to come and go in cycles.

And for sanity’s sake it’s imperative to remember that while you’re going through a difficult time.

I will tell you honestly that as we’ve conquered each challenge, eventually something else would rise up to take its place. I remember last summer feeling so positively about Justin and his life, keeping my fingers crossed that even though he’d entered puberty perhaps he would be spared the problems so many of my friends’ kids have gone through as they entered that phase of their lives.

Of course, in Justin’s case, this was not to be.

I will say this. When I finally reminded myself that every single time we’ve done battle the situation has at least improved, I began to relax more. I was able to clear my mind to focus on how best to attack the problem at hand, and I am confident this helped Justin.

I know it helped me.

Justin is not cured. I don’t know how he’ll be next month, tomorrow, or when he gets home from school today. There could be something challenging and new around the corner that I haven’t even thought of. None of us, whether our kids are autistic or not, know what comes next.

But if you’re struggling now, remember this. It could improve. Hell, whatever it is, it could stop. It’s good to focus on the problem but stress may just cloud your ability to help your child, so try as much as possible to remember that often in autism things come and go, that with the peaks of problems often come the valleys of relief.

Hang in there. Be good to yourself.

Have hope.

 

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September 24, 2018

Be Good to Yourself

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 10:33 am by autismmommytherapist

I am a glass half full girl (most of the time).

I try to adhere to that perspective when I can, but I admit I’m not always successful when one of my kids is suffering. This summer we had a dual whammy of a disheartening diagnosis for my son’s movement disorder, coupled with the knowledge that his affliction was from a medication we put him on years ago.

Not good times.

For two months I was just not my usual optimistic self. Along with this movement disorder came regression in several areas of his life, making him very difficult to deal with, plus a lack of appetite that made him drop twenty pounds over the course of the season, this from a kid who always wanted to eat. Most disturbing to me however was a notable absence of joy, limited laughs and smiles from a kid who worked so hard all these years to break through to his core, his generally happy self. I mourned that former self. And the guilt of thinking his father and I “did” this to him from a medication he’d taken was devastating.

Of course, if you read last week’s blog, we took him to an expert at UPenn in what he supposedly had, and he has tics/stereotopy instead, not from medication, possibly from puberty.

And possibly just because he’s severely autistic.

I’m still distraught that he has yet one more challenge to live with in his life. I thought severe autism and OCD were enough (apparently not!), but we have a course of treatment for him and have seen some improvement, so his father and I are guardedly optimistic. I am relieved this isn’t from a medication, and hopeful that although we won’t be able to eradicate the tics we can hopefully ameliorate their significance in his life.

We’ve already seen a few smiles break through in the last few weeks. They are glorious to behold.

I beat myself up throughout the entire summer, even though the medication we put him on years ago was absolutely necessary at the time. It helped him stay in his private school. It maintained peace and a healthy household. It made him less irritable, more able to contain his frustrations with life and not take them out on his family or teachers. I know we made the right decision all those years ago.

And yet, my brain kept saying to me we should have made a different choice, despite every family member, personnel from his school, and BCBA we’ve known since he was a toddler telling us differently.

Years ago I made a promise to myself that if we made a decision that ended up being a mistake, I wouldn’t beat myself up over it. Autism doesn’t come with a handbook; sometimes the options surrounding an issue are just different shades of terrible. Couple that with knowing we’re making all his choices for him for fifty years, and everyone is bound to make some mistakes.

And it is absolutely critical to your mental health, the welfare of your autistic child, and your other children that if you make the wrong choice, you forgive yourself.

I didn’t hold to my promise, the promise I’d remained faithful to for years. I’m back to it now, am able to think more clearly and focus on helping my boy, not on how I thought we’d inadvertently hurt him. So many of us who dwell in the world of severe disability are so hard on ourselves, second guessing every decision, regretting every wrong turn made.

And I’m telling you this as a fifteen year veteran of the “autism” life- you simply must stop.

Be kind to yourself. You can only do the best you can at the time in every situation you encounter. Remember that. Learn from your mistakes. Know that this life is sometimes impossible, and all you can do is try to give your child, and your family, the best life possible.

The most important thing is you have to be whole and healthy for your child.

And you can only do that if you’re gentle with yourself.

 

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September 21, 2018

I’m Back

Posted in Life's Little Moments, My Take on Autism tagged , , , at 8:54 am by autismmommytherapist

First of all readers, I apologize.

I always find it difficult to write in the summer, what with the driving to the twelve camps and the beach and the playdates, all of which I’m grateful my youngest can participate in. But quite honestly this summer was both so wonderful for Zach and so brutal for Justin that my heart wasn’t into writing about it.

I’m slowly working my way back.

Some things have changed since I last wrote in July, and some of have remained the same. We think we have a new diagnosis (and hopefully his last, a story for another time) of tics/stereotopy, a condition he’ll probably always have, but in theory can be ameliorated with treatment. We are hopefully going to get in to see one more doctor in November who actually sees adolescents (a miracle!) to confirm the diagnosis and treatment plan, and we will continue to work with his neurologist.

Over the last eleven months we’ve had consults with seven different doctors ranging from Israel to CHOP, Kennedy Krieger to UPenn. We’ve had literally seven different potential diagnoses.

It’s been confusing to say the least.

Of course, just like with autism, there’s no blood test to confirm any of this, so we’re going on instinct here and believe the last doctor we saw is right.

I hope he’s right.

I may know more in November. At this point we are just hoping for closure and a corroboration of the plan we received a few weeks ago.

And of course, we’re hoping to help our boy.

Quite honestly, this has been awful for him. I thought having severe autism and OCD were challenging enough, but apparently the universe had other plans for him, plans which have completely pissed me off. We’ve seen regression in some of his life skills, his speech, and his capacity for joy, which has always sustained him. I’m hoping with time and treatment we can at least bring some of these things back to him.

I just want back “our normal.”

I will be writing more in the weeks to come. On the bright side, my youngest loves middle school (who knew anyone could love middle school) and is doing fabulously. My anxiety this summer helped facilitate some weight loss (woohoo!) that hopefully my new calmer state will not undue. Justin has been calmer, and there are still glimpses of our happy boy.

Always have to be grateful for something.

And for anyone still reading this blog, I’m grateful for you too.

 

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