On any given day you can find at least one person who is not a member of our family spending hours of their time in our apartment. Until just recently we had five different therapists, between my two children, not including the ones they have in school. Clark just turned 3 (Happy Birthday, Buddy!!) and started Pre-K 3 at Wallace Elementary which means all of his early intervention has ended and those therapists won’t come to the house anymore. In exchange he gets a 6 hour school day with speech and occupational therapy thrown in throughout the week.
When your child is on the spectrum, early intervention is key. The earlier you can provide the support that they need, the better chance they have to gain the skills to be successful in life and overcome the many obstacles that accompany an autism diagnosis. In order to achieve this intensive treatment that most developmental pediatricians recommend, your home becomes something similar to Grand Central Station. You are found planning most days around when your little one has therapy. Applied Behavioral Analysis (ABA) is the most highly researched form of therapy for children on the spectrum. My daughter receives twenty hours per week in addition to the 6 hours a day that she is in school. The poor kid practically has a full-time job, but it’s what she needs.
There are many pros and cons to this arrangement. The number one pro, in my opinion, is that I’m not in this alone. I have a team of highly trained individuals that are educating and loving my children. Most of the professionals that stay in a field like child therapy (regardless of the discipline) have a heart for what they do. If they didn’t, they would run screaming...which I’ve personally seen happen. There are some people who are just made to work in the special needs world and those are the people that parents like me cling to desperately and sob about when they move or our child ages out of their system or class. Sometimes having people in your house all the time can get overwhelming though. Even if they are the one therapist you like and trust the most. However, it does force me to keep my house in a semi-clean state, which I see as a positive. Who knows what it would look like around here if I didn’t have people flowing in and out of my front door constantly?!
In the beginning, you’re constantly trying to learn how to parent better and you rely on them to show you the way. So, you’re always watching and devoting your energy to concentrating on all the little details of how they work with your child. I also found myself being pretty judgy at first. I was worried that each person was not the “right fit” for my child for one reason or another. I think I was mostly projecting my super Type-A personality onto them. If they were a little disorganized or late a few times, I would get stressed out, even though it really wasn’t what ended up being important at all. One of my favorite therapists to date is about as opposite of me as possible personality wise, but she worked SO well with my son! He loves her so much that for a while he actually thought that every other women that wasn’t me was named “Ria”. I truly believe that she is the reason that he knows any attending skills, direction following, or preschool skills. We were very lucky that his other therapists were also great, but those two had a connection that I just can’t explain. I still text her to update her on his progress and ask her a question here or there.
It’s a busy life scheduling and rescheduling therapies. You know that meme of Ray Liotta laughing that everyone uses? I think it should say “A special needs parent’s reaction when people tell them that they're busy”. I’ve had to color code my calendar to keep it all straight, but it is what is most important in my life right now. I may be a “Stay at Home Mom”, but I am working, like all moms, to give my children the best chance at a happy and fulfilling life. It’s my job to pour over my calendar for hours and run to doctor appointments and specialist's offices. To answer text messages at 11 at night because someone’s speech and language pathologist is throwing up and trying to fit that hour back in to an already packed schedule the following week. If you’re ever looking to hire a really great personal assistant, find someone who used to be a special needs parent responsible for all of their daily activities. You’ll never miss a meeting or go anywhere without all of the million things you might possibly need.
Who knows? Maybe this experience is preparing me to organize a huge corporation one day! I doubt it, but I always try to look for those silver linings. If I didn’t, I don’t think I could function, because the hard truth is that I don’t know where the light at the end of this tunnel is. I don’t know if there will be a day where all I have to worry about is soccer games and gymnastics. I don’t know if they will live on their own and be able to provide for themselves. So, I try to take it one rainbow colored calendar day at a time and find joy in the small moments that pass by far too quickly.
Megan is a stay at home mom of two au-some kids & the co-director of the Hoboken Special Needs Parents Group. Her daughter Aurora (4) attends the Pre-K ABA program at Wallace Elementary. Her son Clark is 2 and a half and is receiving services through early intervention. Both children are extremely active and always keep Megan on her toes! She and her husband moved to Hoboken 2 years ago and were blown away by the help they received from the Hoboken School District. You can also find Megan in her role as the children’s ministry leader at Hoboken Grace Church.