Deep breath, you think to yourself. You can do this, you encourage yourself. Breathe in, breath out. You breathe slowly, with determination to calm your brain at this latest hiccup in her life. It should not be this hard to raise a child. You read all the parenting manuals. You have spoken to other moms that you feel are superior and more experienced than you. You have become an expert, yourself, in learning all what all the medical jargon means. You have navigated the State forms, the School IEP meetings and Insurance requirements.
Then then pitcher sends you another curve ball and you have to begin all over again.
No one told me that I would once again have to prove your child has a disability. Not because there was a medical breakthrough. It’s bad enough that the State did not tell us we had to resubmit, that we found out by chance and almost jeopardized your standing. We once again have to complete the IQ testing, the State forms and medical releases because she is turning seven.
In a few days we will be singing Happy Day my girl, but instead of shopping for presents I am scrambling to keep your benefits.
In equal parts frustration, desperation and flabbergastion (yes, this process has allowed me to create a new word—Merriam Webster can thank me) I begin compiling all the documents. The documents that, once again, highlight that your life is different than your sister’s. You haven’t changed, your diagnoses remain the same, yet we have to prove to the powers that be there has not been some miracle cure.
How I wish there was a miracle.
Not that you are not a miracle. You are in so many ways. It’s a miracle you are here. It’s a miracle you are in school and speaking. I just wish there was a magic wand to take away the struggles that make your life more difficult.
I also wish there wasn’t so much paperwork!
Unfortunately there is no Fairy Godmother. I go through the process, hoping that I do not forget to dot an “I” or miss a checkbox that will reject your paperwork. I see the silver lining:
After this submission I do not have to submit again until you are 18. Nine more years before I have to go through this process of keeping your benefits secure; just one of many things you are unable to do for yourself.
I’m the mom; I can handle what needs to be done. Paperwork is no match for my powers.
I wonder if I can set a calendar reminder for 2026?
(Un)Diagnosed and still okay 
I am in the process of writing about the Hell we call paperwork (there are a few posts ahead of that one though, but it’s in my drafts) I hear ya! I get it! You would think they would just make ONE things easier for us – just One, I’ll take One.
LikeLike
Goodness. I hate the paperwork too – but mostly because my ex always has to put his two (usually incorrect) cents in and confuses everything. Good luck. And enjoy another birthday!
LikeLike
Well hang onto your bootstraps for the big 18. Between SSI and insurance and HIPPA and guardianship, it’s enough to put you in the funny farm!
LikeLike
We had an ARD meeting to revise our son’s IEP yesterday, and to set up more testing at the school. Both my husband and I as well as our son’s teacher had to fill out a bubble form stating if our son does x,y,z, and, is it never, seldom, often, almost always, as well how important (or non important) do we feel those things are to his development, and so on. I thought that form was tough (it took us about an hour, it felt like, for 87 questions). Then I get to the meeting and I am asked questions about when our son hit his milestones. Egads, I couldn’t remember three years ago when I had to answer them for the developmental center, I cannot remember now that he’s seven, so I answered “he hit every milestone but speech on schedule.” That was sufficient. I felt muddleheaded answering questions that I hadn’t had to answer in three years, and I get to do this every three years, so long as he is in school. I am not thankful that we don’t have insurance, but I am thankful I don’t have to prove to insurance companies that our son has issues. This going through the school — who is wonderful and great and supportive and taking on more than they have to to help our kiddo out — is enough!
LikeLike
Good luck. Jumping through hoops is annoying. Yes, you can set a reminder for something that’s years in the future.
LikeLike