Let me first start off by saying that I am one lucky woman to have a great husband and four amazing children. I would never take that for granted. But, after raising my first three girls in a typical world I am often reminded just how far society has yet to come in making those with disabilities feel truly accepted.
What does it really mean to have a child with a disability? EVERYTHING is a production.
Here is an example of what it’s like to sign your neuro typical child up for a summer recreation soccer league: You forget to sign them up, but have no worries because you know they will have a spot. In fact a coach calls you and says “hey, I noticed you forgot to sign up so and so , so I saved them spot. I would love to have them on my team.”
Sign – up process for Maria : You see the age ranges on the registration form and although she is 8, you know they can”t safely play in a co-ed 8-9 league because she is the size of a four year old. You call the head of the league and ask if she can play down an age category. No one returns your call. Because your older child wants to play and your registration is now late, you send in the form but only sign up the older child with a note attached explaining that it is late because you were waiting for an answer about Maria. You get a call back, but the answer is no. You are not even mad because you understand they have had previous issues with parents playing children down a range so they can be ‘stars”. But, at the end of the day, Maria cannot play and you are sad. Yes, she can play in special needs leagues, but all of her classmates are playing in this league and it is just another reminder of something she can’t do in our typical world.
Which leads me to friends: Your neuro typical child: “Mom, can I have a friend over?” Me:”Sure, call whoever you want.” The child comes over, they play and have a great time. The next day the playmate calls to have my child over their house.
Playdate for Maria: Maria “Mom, mom, mom, Claire, play at my house?” Me: ” I don’t know honey. I can ask their mom, but I think they are busy today.” Sometimes I ask, sometimes I don’t, because they are always busy and it breaks my heart as much as it will hers when she realizes the real reason they are always busy. Don’t get me wrong, Maria is always invited to the class birthday parties and has had one friend over couple of times. But, has never once been asked to play over at another child’s house. She spends most of her time playing by herself or with her sister’s teenage friends. I am sure this is why she has grown to prefer older girls. She also loves to play with toddlers, because they never tell her no at the playground when she asks to play.
Going to a birthday party: Me to typical kid “Are you ready to go?” Them “yup.” We go, they have a blast.
Birthday Party with Maria : An hour before we have to leave you say ” Time to get ready for the party, go to the bathroom first.” Maria: “I did!” Me :”no, you didn’t, get on the toilet.” She begrudgingly goes in the bathroom. I tell her she should try to go poopie because it is a jumping place and she has not gone in 5 days and I know she will have to go at the party. She whines and cries on the toilet for 20 minutes and with all that screaming and pushing you assume she must have gone. Nope. You give up the fight and get ready for the party, which takes another 20 minutes. You don’t want her to miss a chance to actually play with her friends outside of school. You go to the party and she has a blast jumping with her friends. You let her have the gluten filled birthday cake, because she loves it and you don’t want her to keep feeling left out even though inside your head you are kicking yourself for allowing it. When you get home, the gluten has helped relieve the bathroom issue though so all is well.
I could write pages and pages on how painstakingly exhausting it is to sign your chid with a disability up for school and get them the services they need to be successful, but I will spare all of us that today. Just know that it is honestly a part-time job for the parents.
As I sit here texting with my eldest about her new boyfriend and grad school, I am praying that by some miracle I will someday have to go through the “production” of helping Maria through those things as well.
My two oldest entered the workforce at 16 with nothing more than a pen and paper application. There was typically a follow up phone call from the employer telling them when to come in for training. I cannot even imagine the production it will be for Maria to get a job.
Perhaps ,someday, people won’t talk to me about Maria right in front of her as if she was not there. Almost daily someone will ask me a question about her while she is standing next to me. In my head I say “she is right in front of you, fucking ask her” but in reality, I answer. Although, now I am in the habit of turning to Maria and saying “i don’t know, Maria, what do you think?” This is a not so subtle way of trying to teach others that people with disabilities are just that, people. Expect the most from people and assume the best. Anything less is just insulting. If they need extra help they will let you know.
What it all boils down to is expectations. I expect an enormous amount from Maria, because I know she is capable of doing many things with the right guidance. The world expects nothing, which could be an easy way out for everyone involved. She could just stay home with us, not attend parties, or join teams or school for that matter and it would probably alleviate a lot of stress. With a typical child that would border on child abuse, but the world would not bat an eye if that is how we raised Maria. Only being a few decades from children with Down Syndrome being institutionalized, there are many that would still prefer her staying in the confines of our home. So, we go through the “productions” to give our children the most well rounded life we can and we hope that someday society will catch up and make the “production” a little less exhausting.