A family's story


I met with Jake’s teacher and resource teacher today. They are seeing the same regression that we’re seeing at home. The inattention. The lack of focus. The copious amounts of impulsive behavior. The loss of independence. The loss of our “Jake”. In the 2 weeks since he’s been on the new medication he has lost so much. Yes, the tics have stopped being so pronounced, but he’s anxious, perseverative, and impulsive. Off the record, there are rumblings of a self-contained classroom next year if he doesn’t start improving. Self-contained. 

All of the glorious progress that we saw from last February until the end of this January seems to have vanished. *POOF* Jake is requiring constant input from his teachers. He is melting into puddles on the floor and in his chair because the work is too hard. It’s just too much. He’s falling back on the old pattern of depending on his old friend rather than branching out and playing with the boys. He’s requiring more help with self help chores at home. He needs constant reassurance and his anxiety is through the roof.

We all know he is capable of achieving great things. He is making such strides. Or was. I have to get him off of this medication. It is ruining his life. Literally. He knows he is out of control. He keeps talking about his brain going crazy…and he has been writing so many notes of apology to me, Hubz, Tate and Cole when he’s impulsive and inadvertently hurts one of us. It’s breaking my heart.

It all feels so heavy. All of this. The worrying. The parenting of a special needs child. Of two special needs children. The calls to the doctor. The shuffling kids from therapy to therapy. The insurance EOB’s that pour in. The expenses. The knowledge that my children are different, wait, that their neurology is so different and that they just don’t fit quite right into the standardized world.

And as heavy as it feels, I know I am not alone. I know there are other parents out there struggling with “the weight”. I do find comfort in knowing that there are others out there who understand..and who understand that when I say “this sucks” and “it’s not fair”…they know that it’s just my way of processing through the hurt of seeing my children struggle. So, even with this heaviness within me, I will pick myself up, and keep moving…because I have these beautiful children who deserve no less. And I will hang on to the hope that I’ve seen before..that my heart knows is out there for a better day.




Comments on: "Heavy" (14)

  1. Yes my dear. It is heavy and it does suck sometimes. The seeming unfairness of it all. The ups and the way downs. It’s heartbreaking and exhausting. Physically and emotionally. I’m having battles now with our health insurance and I know I will lose. Financially we are struggling … yet I can’t just stop the therapy because I need to do all I can for my 2 boys. It feels like a no-win situation sometimes. I’m really sorry you’re in a tough spot right now. I’m sorry too for dumping my stress on your page. Didn’t mean to do that but it came pouring out. *Tight hug*

    • Oh, Deenie. I hope that you don’t lose that battle with insurance. These tough spots are what test us..but also make us stronger. Praying that insurance comes through for you and the boys… ((hugs)) Please do not apologize for dumping your stress. We’re all here to support each other!!

  2. You are not alone. So many times a day there is the struggle, just on an average day. Then, when the struggles begin to increase, of course, we are overwhelmed with anxiety for our children who depend on us fully. It does suck not to be able to bandage it or fix it or give it something to make it better. This is one of your “hard place”s – there is always hope and you will find that right med, I know it. And I know Jake needs to get the other out of his system and he needs time. I wondered as I read your post, about how flu and viruses affect our kids differently. Kids with ADHD, autism, any differences, seem to have difficult times after a cold or flu… Maybe he just needs more time to recover both from the wrong med and the bugs that are going around? And I send you tons and tons of hugs!!! xoxo

    • Thank you, Karen. I think he is definitely struggling with viruses and wrong dosages/meds. We’re trying a new dose of the same med because the doctor thinks he started too low. We shall see. The past 2 days have been a little better on the higher dose…

      I know you “get it”. Thank you for the support and the hugs!

  3. o that broke my heart to hear about him writing you all the notes. I understand how painful and helpless it feels to watch your kiddos struggle. big hugs.

    • The notes are what really made me break down. That is just a plea…and it is painful and helpless to watch them struggle so. Thank you for the support..it means a lot.

  4. You are definitely not alone. I so remember feeling like this. The good news is that just as there are really difficult times, there are also easier times. I’m hoping that that is coming for you soon.

    • Thank you. It is comforting to know that other parents have been in my position before–and that I’m not alone. I am hoping these easier times come soon…these rough ones take so much out of all of us.

  5. I am so sorry you are having a rough time. We are having it rough over here too. And it does suck. Must be the time of year or something – my little middle is spiraling out of control, and she doesn’t even take any meds, so I am at a loss. So many of us are going through it. I find myself looking backwards to “before.” Before we knew about the autism and the other disabilities. But you have to keep moving forward. You will find your way, and your sweet boy will pull through this. He has an amazing mama to guide him. Hugs.

    • Thank you for the comment! I am sorry that she’s struggling, too. This time of year is tough, in general, I think. The weather. The cold. The busy-ness of school and activities and little outdoor release time. Thank you for the support…and I hope things get better for you all soon!!

  6. As they all said, you are absolutely not alone. This is what we went through last year with the meds. So good then so…not. It’s so hard, but I know you all will make it through. We’ll be there to help.

  7. All I can do is give you a big {HUG}.

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