First, we are lucky to have the support of our service providers. That said.
As the parent – make that the mother – of a child with special needs I interact with at least 8 service providers a week. That includes but is not limited to: a school director, pre-school teachers (at least 3), aides (1-3), an occupational therapist, speech therapists (3) and a physical therapist.
And, they are all without exception women. And, many – not all – of them have given me on numerous occasions their unsolicited opinion and advice and what I believe at times to be judgment about how I should do things as a mother. (Yes, of course I have also heard very nice things. I have even asked some of these same providers for advice which they have given generously of their time. But this isn’t about that.)
Well, you know what? I am done. If I didn’t ask for your advice don’t give it to me.
There are so many things to do as a mother of child with special needs. I am not complaining here. I am actually afraid I am not doing enough. What I do aside from just being a regular mom: give Thorin his medicines in the morning, put a note in the lunch box for the teachers about what he did the night before so they can elicit some combination of talking and signing, at school-drop off tell staff when he should get his medicine, remember to order the bike-thiny, scissors and bump seat from the occupational supply website, enroll him in dance class because he loves to dance and he can be around more typicals, make arrangements for him to go to a typical day care in the neighborhood on Fridays for the same reason, drive approximately 2 hours a day getting him where he needs to go, practice speech sounds with him at night, read books on Down syndrome, do research on the internet, take him to numerous doctor appointments, advocate for him on a weekly and sometimes daily basis, write blog post so maybe people will get that kids with Down syndrome really rock this world, worry about his asthma and love him so fiercely it hurts.
Oh, and hold a job outside the house.
So, I don’t want added to my list those things I find more mundane and really things that are a matter of opinion. The following are examples just from the last week – I have literally hundreds of examples over the course of two years:
I don’t want it implied that I sing the “Good-bye Song” *when he doesn’t want to leave your office. My method of putting my hand out and saying in a nice way, “Thorin, we are going now” or even picking him up is acceptable parenting. Imagine a father taking his son to a male service provider who said “Sing the Good bye song…” The father would probably say or at least think something like, “What, did you leave your penis at home today?” And, he would be saying it because it’s such an uncool thing to do. Men don’t roll like that. It is one of the great things about men.
In addition, I don’t say things like “Use your listening ears.” I don’t sing the “Clean-up Song”. I say, “Listen here, mister, you made the mess so help me pick this stuff up.” **
And, before I forget – when I tell you we are trying a non-dairy diet to see if he will have firm poops don’t tell me he has firm poops when he is with you. I don’t even know what to think about that one. Do you have some female super power that firms stool?
Furthermore, starting today none of you are allowed to talk about the dangers of setting the bar too high for Thorin. The bar is set high and will remain so until further notice. No discussion.
And, please keep in mind I don’t just hear what you think I should be doing but I hear it from a lot of other chicks, too. I can only take so much! These “helpful” comments make me feel observed and judged and crappy. I do that to myself as a mother already I don’t need your $hit in my head as well. I hear consistently from you, “Pick your battles.” Right back at you girls, just because that piece of advice shows up in your head doesn’t mean it has to come out of your mouth. Button it. Zip it up. Shut. It.
And, you know what? I will too. Part of the reason this gets under my skin is that I am guilty of this same behavior – just ask Ward or really anyone who knows me. I don’t know if it is our care-taking roles as women, estrogen or just plain old bossy boots behavior. But, I do know it hurts other women (and men and our children).
* I do like to sing the Yo Gabba Gabba song “Don’t Give Up”. Go figure.
** I fully support you using these methods with your own child or with mine when I am not there and can handle the situation myself.