J-Bear and Me

learning to navigate the world, j-bear style

Month: February 2016

Oh No, Not Medication!

Friday we met with a new neurodevelopmental pediatrician for J-Bear. This is the doctor that follows his autism and his development rather than treats his physical health. She is on his team to keep him growing in the best way he is able cognitively, emotionally and mentally. It was a great visit and we covered a lot of ground about the inner workings of a J. He fell in love with her welcoming, fantastic office. This doctor knows her typical patients, let me tell you. The office was quiet, the colors were peaceful but not glaring and the lighting perfectly right. Large Yogibo beanbags peppered each of the rooms and there were plenty of toys for hands big and small to keep calm with. J was in heaven.

The more we all talked as J played and engaged on his terms, the more we realized some things have been long-term issues without resolution. The largest of these issues is sleep. J does not sleep well on his own. He cannot even sleep by himself, for starters. He has to have another human beside him to help him allow his body to go to sleep. He does not sleep through the night with ease and even when he is sleeping he moves constantly. It’s like he runs miles in his sleep, I swear. This leads to exhaustion and a shortened fuse every single day for this poor kid.

We tried melatonin and for our trouble got night terrors. We tried weighted blankets, which give marginal success until he kicks them off as he overheats easily. We tried a dog and though she could help about half the time, he could get overstimulated by her presence though she sure did try. We’ve changed lighting, we’ve changed routines, we’ve changed everything we could think of… Still, sleep is completely elusive for this poor kid*.

There was much discussion and we came to the conclusion that medication is in J’s best interest.

People do not like to consider medication for anything but the strictly physical. I remember in August of 2011 being at a point where I just actually wanted my life to end. I was in so much mental pain and in such a deep state of being unable to escape the symptoms of what turned out to be complex PTSD that I actually thought ending my life would be better for all sides involved, even my then one year old son. Disgusting and scary, right? Medication was the start to saving my life and yet, there are those who would mock medication for mental illness. There are those in my life who did use my turning to medication as a weapon. There are people who will judge harshly over this choice too I am sure.

If J had an ailment that disrupted some physical process like insulin production, the ability of his blood to clot or not clot, etc., no one would bat a lash at him taking medication to keep his body healthy and able to function. That is what we were hoping for him now. The body cannot function without reasonable amounts of sleep, good sleep, and we’re working hard to help him get that so he can feel better in his own skin. The pros and cons were weighed. The pros heavily won the day.

The dose is quite, quite tiny. The doctor jokingly said he pretty much just needs to stand near the bottle and inhale, the dose is so small. She’s not far off on that description! We’re starting small and seeing how it evens out over time in his system and if this is enough. It’s been but two nights and things have been different in moderate steps. He sleeps better, but still not through the night. He is calmer during the day, but that could either be from what sleep he gets or from feeling mellowed by the medication as his body adjusts to it.

It’s been nice to see him being more able to work through struggles the past couple of days. I am hopeful that this is a sign of things to come. Yesterday, he helped me do a few things for my mother. He made his pop-pop laugh and his nonie smile. He swept their floor, showed them how to use a swiffer duster and generally was charming. This was something that was much harder but a couple of days before.

Now, medication is not our only answer for J. Ever. We are adding in some therapy that hopefully will fall in line with therapy he had great success with as an under 3-year-old and of course in due time his service dog will arrive. He’s not a boy for whom one single tool will aid all situations. He will always need to keep that toolbox full and it’s my job to make sure that it is just that, full and at the ready.

 

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*= So funny story: if you want to see J sleep like a total dream, like he’s never had a single issue with sleep in his life, put him on a cruise ship in rough waters. The sensory stimulation alone sets his entire body at such peace and rest. It’s not something one can replicate on land easily but hey, maybe this means he’s meant for a life on the high seas!

This and That

I am really good at these posts that have a lot of random bits but not enough of each bit for a real meaty entry. Buckle up and hang on for the ride!

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J has been fighting within himself for a couple of weeks now.  It is hard for me to explain what is going on. People in general, no matter how they are wired, can often encounter this rift between what they are feeling and their ability to express said feeling. It seems right now that for J, that rift is more of a large, deep and tumultuous gulf. It is understandably upsetting and frustrating to feel things that you want to express and let out but you do not know how to do so. This often leads to outbursts, to acting out, to just him not being himself.

Frankly I cannot blame him. I’d be equally inconsolable if I felt lost in my own skin. I just don’t know how to reach him in these moments.

I sit, patiently waiting. I set boundaries and make my expectations as clear as I can. I get frustrated, too. I get upset. I’ve broken down and cried once with him in my arms. It’s not pretty, it’s not perfect, it’s not fun.

A lot seems to circle back to grief. Loss is becoming real to him. J’s way is to slowly come to a full realization of an abstract, difficult concept. He’s always observing, thinking and putting pieces together but those abstract emotional things are plain hard for a concrete, linear thinker. He’s realizing that there can be massive upheaval. He is realizing that his beloved girl was forever taken from him. He cries for her regularly and grows possessive of his precious stuffies.

No matter how long you saw this coming it still shocks the system and weighs down the heart.

We have light now, though. We will get through this.

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Who knew light could arrive on four prancing feet and covered in the softest, curliest fur?

J and I volunteered at APAW last week and for the first time in months, we both were light and free. J was so proud to have purpose. I hold back tears typing this because I had not seen that centered boy since June. He listened well to Jillian, APAW’s caring leader, and greeted the volunteers and their dogs amiably as well as some clients. He beamed over kisses doled out by sweet Empathy, a poodle in training, and chatted about the different dogs the whole drive home.

The class made it easy to realize that no matter how long our wait for his perfect partner is, it will be worth it. We are with people who care for him and his best interests now. What his needs are matter first and foremost when it comes to making a great match for him. There can be no deadline set for this. An arbitrary date will not produce perfection, it will merely limit prospects and possibilities. Would we rather a partner sooner over later? Of course we would. I would be lying to say bringing home a puppy tomorrow wouldn’t put me over the moon… But I am realistic. We engaged APAW because they make it their business to be subject matter experts in what they do. They have welcomed us into their fold and let us help in any way we are able, so the love we have ached over carrying since Brookie was snatched away will not go to naught. It will be shared with all these lovely poodles we meet and we can happily watch them on their journeys.

Do I wonder sometimes if a pup I meet will be J’s one day? I’d be lying to say I didn’t, but it is easier to immediately think “wow, they are sure going to make someone so happy”… Because they are, no matter what their role. Someday, it’ll be J’s turn and we’ll be okay until that day comes.

Puppy kisses help the time pass a little faster, though. I cannot complain about that!

 

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Those of you who have experienced life with IEPs for your children or as an educator know that every 3 years, re-evaluation must occur. J is in the midst of that right now and let me tell you,  I am nervous. It came as a great relief to learn that his beloved preschool teacher is doing much of the evaluating for him, so he is agreeable and trusts her. I know how much J has grown and how much he’s gained. He is so smart and quick, it’s just always nerve-wracking to see what people put down on paper to attempt and quantify your child. It’s not hard to see where his weaknesses are but here’s hoping that his strengths are seen and celebrated, too.

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