There are days where all I feel is an immeasurable amount of burnout.
We do therapy 5 days a week. Our average week right now is like this, with 2 days of speech therapy to begin soon:
Monday: Early Intervention (Developmental Specialist) – 1 hour
Tuesday: Occupational Therapy – 1 hours, ABA therapy – 2 hours
Wednesday: ABA therapy – 2 hours
Thursday: Playgroup/Parent Group – 2 hours (ABA during this), Occupational Therapy – 1 hour
Friday: ABA therapy – 2 hours
Except for Tuesday’s OT and Thursday’s group, these all occur in the home.
I feel guilty having negative feelings about this because I know there are families out there fighting tooth and nail for ANY services, yet here my son is blessed by abundance. What he needs is found for him, but there is a price for that.
When he’s not in therapy, I have to do life stuff. The apartment always looks moments away from being condemned. The last time I looked like a respectable adult was I do not even know when. I drown myself in research and paperwork, constantly signing up to learn more and more and more because every ounce of knowledge could be that one tool in the tool box that helps break J wide open or at least gives him enough relief from his struggles to focus on being present and playful.
My dedication has been both praised and mocked. I am not a martyr. I am doing nothing more than any other loving parent would do, I believe. This does not mean I deserve to feel so lost and so unsupported.
So I do what any other normal human would do and pour my heart out to the anonymous internet. That’s sane, right?
I lay my soul bare on this matter because I know I simply cannot be alone. There’s likely at least one other primary caregiver – mom, dad, grandma, grandpa, auntie, uncle, foster parent, whoever – who is feeling the same way and is as scared as I was (and am!) to put a voice to the darkest feelings in their heart.
I love my son. He is why I do everything I do. He deserves all that I did not have: someone to fight for him, to seek all hat he needs in this world and to be there by his side no matter what. He challenges and frustrates me and there’s some days it is ever so tempting to stick him in a box and mail him away to the first person who’d take him but in the end, he is so very much my world.
I just wish I could have, you know, a day off once in a blue moon. Maybe even just once every other month.
This job, alas, did not come with that sort of benefits package.
Edited to add: J’s fever broke late Friday night or early Saturday. He’s still got a yucky cough but is doing much, MUCH better. Thank heavens.