Now, this shouldn't be confused with the desire to "fix" or child, or "cure" our child. This instinctual drive comes in forms of trying to get the world to embrace our child, to offer them basic comforts, the ability to participate in the world around them, opportunities that aren't readily available or offered to them, exploring therapies that could offer their bodies relief and assistance, equipment that allows them comfortable support and safety during their days, and even recreational resources that simply allows them a childhood.
I can only imagine the amount of invested hours I've spent hunting down equipment for Noah, exploring therapies that might assist him in various ways, and advocating for his daily needs. I do it because it is a drive that I cannot ignore. When you are a special needs parent there is no path of least resistance. So swimming upstream it is. Admittedly, no matter how hard I try to line up all the cards to help Noah a ball always drops here and there and it's hard to pick up and either change directions, or find another route.
Therapist changes are always tricky. People move on. I had a career once upon a time too, and I know what it's like to want to strive to do better and advance, so by no means are therapists exempt from that same drive. Therapist turnover lately has felt particularly high. And I often get attached to people that work really well with Noah so when they move on to other career endeavors you feel like you're starting all over, building a new relationship and trying to connect with another personality that clicks with your child and us as parents. And sometimes a therapist moves on, and their agency decides not to replace them - equally as hard as that really often times shuts the door completely on a type of therapy you once were doing.
Recently, I learned that an equipment vendor, named Fred Storey, that I relied heavily upon for importing items from the UK that I couldn't otherwise find a way to get has closed for business. They were the only vendor I had willing to send me anything from their inventory - provided I could find a way to fund it of course. I feel like I kind of lost something really important to me. Not only did this vendor have an amazing selection of special needs equipment and sensory items, but they were unbelievably kind and loving qualities that are often rare to find in a business that deals with special needs here in the US. Noah's sled was purchased from Fred Storey and I contemplated so many things that I wanted from them but I didn't have the money for. Dream items. Things that would have been just lovely for Noah. They were good to me - they were so good to Noah. And I'm so thankful for their services and the difference that they made in my life and in the lives of so many like him. They will be missed I am sure by many.
It feels like I'm starting all over again. Finding new therapists, trying to make new connections, finding new equipment resources and options for Noah. It is much like that feeling when the rug is pulled out from underneath you. One would think that special needs parents adjust faster than most to change. After all we've faced the ultimate life-changing event just by having a child who has special needs. But we're not subject from a routine that feels familiar, a therapy your child loved and can no longer do, or having a connection to help and support and that all suddenly disappearing. Our calendars and phone books have this line-up, you know who to call for what you need, who is trustworthy, who you can count on to deliver for your child. Then one day poof... gone. There goes a whole section of your Rolodex. And so you start over because you are forced to. Special needs parenting requires dedication, perseverance, and reliance of knowing you have to swim upstream.
"Every new beginning comes from some other beginning's end." - Seneca
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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