Originally posted at UndiagnosedButOkay
Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot . It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.
In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.
Not only did the parents lose any hope of privacy, so did the other children.
It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.
The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.
But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!
When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.
We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.
When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.
I better make sure Boo’s socks match.
Kristi Campbell says:
Kerri,
This is so true – having children with special needs does put us on display so much more. I talk to my son’s teacher about things that I wouldn’t talk to my own family about! I love how you described being drafted because so true…not the life we originally signed up for when pregnant.
Paris – thanks so much for featuring Undiagnosed But Okay! Awesome post.
PS – forget matching socks. Nobody who matters will mind.
Rachel says:
Smart, thoughtful and beautiful post. I have a friend who laments all the therapists in and out of her house. She’s a neat freak to begin with, so it’s not for that reason. She just feels like they have no privacy and she also struggles to plan anything else for her daughter.
Rachel says:
Smart, thoughtful and beautiful post. I have a friend who laments all the therapists in and out of her house. She’s a neat freak to begin with, so that’s not the reason. She just feels like they have no privacy and she also struggles to plan anything else for her daughter.
Maggie Amada says:
Kerri, thank you for this view into your life and your worries. I’m sure my imagination doesn’t do justice to the pressure you live under. Just know that a clean house does not a good mom make and un-matching socks could be a fashion statement. 🙂
Misty @ Meet the Cottons says:
didn’t you hear? mismatched socks are in!
i, too, am guilty of having a messier house now that patty doesn’t have inhome speech therapy!
thanks for sharing, it’s oddly comforting to know there’s another mom with similar fears out there!
Joy@icansaymama says:
Very well written. Seriously, I cannot imagine all the therapists coming to our house (hm… but I guess the positive side effect would be that our home would probably be cleaner and picked up on a regular level 😉 ). It is not done here.