Since Noah was 9 months old it has been pounded into my head the importance of early intervention, specialized education services, and at home therapy. I have spent an ungodly amount of time researching ways to incorporate “language” into everyday activities for a non-verbal child. I have taken the advice of each of our therapists on ways to use the skills they are working on in therapy with him on a daily basis. I have done my due diligence to maintain a creative, enriching, and FULL therapy schedule for Noah. I have pushed him, too hard at times… but not because I want to “fix” him or even believe that I have that ability. I’m terrified that if we would stop a service or miss too many sessions due to trips to KS that he may… god forbid… regress.
Regression was a terrifying word when Noah was first diagnosed. Before we understood much about AS, everything was a scary possibility. Thankfully, Angelman Syndrome is not a degenerative disease, it is not associated with the loss of skills. It has taken me over 2 years and lots of discussions with professionals to come to terms with this word and it’s lack of direct impact on Noah’s life. Sure, regression is normal, we all suffer from regression at some point in our lives… For example, during my first trimester of pregnancy (2nd time), I suffered (still am) with terrible nausea, fatigue, and minor depression. It has greatly affected my activity level to the point that dressing myself was almost more than I could handle some mornings… And to think that, just 4 months ago I was able to go to the gym 4 days a week to lift weights, run a cool 4 miles, and do a sirsasana in the yoga studio. Today, I am building up my endurance so that I am able to run 2 miles interval style… That is regression. Noah has suffered regression from time to time which has told us that his therapy is working. I made the assumption that regression indicated a total loss of a skill, never to be regained. Therapy was clearly the only prescription for such a “condition”.
Moving from St. Joseph county in South Bend, IN in 2012 to Monroe County in Rochester, NY we have seen and been a part of the most beneficial change in Noah’s life up to this point. We have been offered services ranging from music therapy, to playgroups, to free trips to the museum with speech therapists. We have four different therapists visit our home each week for a total of 6 hours and he attends a preschool group for 4 hours a week… That’s just the work done with professionals, we haven’t accounted for the endless “experiments” we try at home with him… The joint compressions, brushing for proprioceptive input, the wheelbarrow walking and swinging for vestibular sensory needs, and the endless toil that is his glasses. Needless to say, he has a schedule fuller than the majority of 3 year old children and has since he was 10 months old. This routine is something that keeps me feeling “safe” about the situation and yet at the same time, somewhat jaded. I’m not typically one to complain about anything regarding Noah, his level of care or his challenges… I grumble about plenty of other things, like pregnancy… ask Matt. Sometimes, I want a break… for Noah, for our family, selfishly, for myself. Not a break from Noah or my family, but a break from the routine, the constant need to keep a well manicured home (which is something that I have learned to do quite well over the past 2 years, thanks to the therapists who come over), a break from making sure that Noah is on his best behavior, well rested, fed, and ready to work hard for that hour… then getting him down for a nap, fed, and ready to work just as hard for the next session. All the while, trying to maintain a “normal” childhood and lifestyle for our family.
From the beginning, I told Matt I was not interested in having a “special needs family”. Yes, I recognize my son has needs, some being significant, but I didn’t want our lives to revolve around those challenges. I want to raise my son to experience the same things Matt and I did growing up, like family vacations, playing make believe outside, ice cream on the porch, and getting in fights with our siblings… (that one is yet to come, I’m sure :)
So where am I going with this, you ask.
In a mere 7 weeks, we are packing up our belongings and one of the most fulfilling journeys of our lives and moving back to the Midwest. Matt will start a tenure-track professor position at a wonderful liberal arts college. Noah will start preschool is highly sought after school district with phenomenal special education services, and I will be pregnant. (uh.. ha). We will be surrounded by old friends, our alma maters, and the comfort of a return to our “first home” as a married couple and family. Noah will not be offered services through the district for at home therapy… He will not be offered music therapy or free trips to the museum with a therapist… He will go to preschool 3 days a week and then come home to me. The reality of this drastic change in his level of therapy initially had me believing that we shouldn’t move, Matt should turn down the job, and we should stay put in Rochester. My mind was made up, Noah was more important than a salary increase or job permanency. He was more important than having nice furniture or trying out new restaurants due to lack of income. His busy, draining schedule was our life, now and forever more… Right? I was brought back to my original thoughts regarding my distaste for a “special needs family” and how I didn’t want our life choices to revolve around his challenges.
A few weeks ago I ran across an article about children’s resilience, learning capabilities and motivation. It discussed how some children thrive in rigorous therapeutic schedules, they crave routine and normalcy. It discussed how some children with more severe needs do better being home schooled so they are receiving more attuned care. Lastly it discussed the children with special needs who did best when placed in a typical education setting. Clearly, they will require specific assistance for the needs they carry, like helping them use silverware properly, toilet training at 4 instead of 2, and language assistance… But perhaps a full load (of services) at such a young age isn’t as beneficial as once believed. Honestly, the only person to make a decision about their child’s education and well-being is the parent, not an article, a study, a doctor or a therapist. We as parents know our children better than anyone else and I can *almost* wholeheartedly say that I am eager to see how little Noey will do in a new typical education setting. A schedule that isn’t bogged down with 3 therapists a day visiting our home and making him work (obviously, no offense to any of those therapists… for you have taught us the best ways to assist our little guy). A daily schedule where if naps don’t happen because we’re having a picnic at the park… well, then they don’t happen. Thanks to his amazing therapists in Roc, he is loaded with a solid base of skills in every arena and those aren’t skills that I fear he will lose.
So while I used to take solace in the fact we carried a heavy schedule, I am looking forward to seeing what my son is made of, however scary that may be as a mom.
I am most excited to see what amazing things he will teach his little brother or little sister.
Compassion is his story, Joy is his life.
Raise him up on blue
Oh, his spirit will shine through
Faith in all you do