Raising a child with sensory processing disorder is like spending your entire life renovating a house. Renovating a house is a huge undertaking; it can sometimes be really messy and ugly and occasionally, your work uncovers a rare gem that would never had been discovered if you hadn’t started pulling back the layers of wallpaper in that &@#^ dining room!
In my experience, all renovations go through certain phases that are rather similar to what we have experienced on our sensory journey. Renovations begin with the stage I like to call, “the lofty goals time period.” During this time period the renovator looks around, makes a lot of notes and says to him/herself “Yeah, I can do this! This will be a piece of cake!” The renovator creates a timeline for the project, presents it to his/her spouse/partner/friend and says This will be way better and cheaper than if we hire someone!” The partner is skeptical that this project will turn out the way it is being sold but her loved one’s enthusiasm sways her and in a show of support she says “Ok! Let’s do it!” When our daughter was diagnosed with SPD my husband and I looked at each other and said, “Now that we know what this is, we can fix this.” “We’ll get this under control and be on our way to a blissful child raising experience in no time!” Our friends in the special education field told us “She’s so smart, she’ll only need an IEP for 6 months!” Two years and many IEP revisions, additional services, glasses, other diagnoses later, I can’t help but look back at my naive self and shake my head.
Enter stage two of the renovation or what I like to call the re-evaluating your plan and timeline stage. This particular phase of the project involves a lot of research, trips to Home Depot, calling friends and possibly other handymen to help, lots of late nights and an abundance of cursing. You have pulled down the wall paper in the dining room only to find there are four more layers and you think…”No one would really notice if I just paint over this right??” You look around your demolished upstairs and tell your very pregnant wife that the baby’s room might take longer to prepare than you thought and promise that the baby and your mother in law will have a place to sleep before the baby arrives. It is at this time that the non-renovating partner looks around the mess in his/her house and thinks “Why the h--- is this taking so long? It can’t be that complicated?” You, the renovator, begin to consider giving up and just hiring someone to do the job. Is the sense of accomplishment really worth all of this hassle? But you dig deep and with the support of friends, amazing professionals and unlimited access to DIY videos on you tube, you decide not to quit and forge ahead.
In our parallel SPD world, this second stage occurs after you have your diagnosis and your child is set up with services. Quickly your providers beginning to notice things and all hope of this processing being a quick detour off the child rearing path you always planned for are shot. The professionals begin to comment on her eye tracking, notice that she doesn’t cross the mid line and ponder on the fact that the behavior they witness at home is not what they see in the therapy session. You begin to get frustrated so you buy books and read every page. You join online support groups, searching for help and as a last ditch attempt to put the picture of your child completely together you start seeking alternative therapies. And then one day you find yourself at a very Eastern medicine workshop holding jars of herbs buying into what the nutritionist is saying and you stop and look around and think, never in a million years did I think I would end up here! But, here you are and you are committed to do whatever it takes to help your child succeed and feel comfortable in his/her skin.
Finally comes the home stretch. This is the most satisfying stage of a renovation. (It is also the time in our life that usually coincides with a move to a new home and new projects.) You have done your best, you have asked for help with the aspects of the project you couldn’t do yourself and you are generally pleased with the results. You know that soon there will be another project that will absorb your nights and weekends but for one brief moment you pause and admire your work and pat yourself on the back. For a sensory processing parent this phase occurs when your child achieves something two months, two weeks, or two days ago he or she couldn’t do. When your therapist looks at you and says he/she can’t get over the progress your child is making and how far she has come. When the warmth of pride and tear inducing joy bubbles up inside of you and you begin to let yourself think that maybe everything will be alright. We have all been there and while we know that more than likely tomorrow or the next day will contain a setback of some level, for one moment we can step back and look at our beautiful child and appreciate the hard work that has been done to help his/her light shine bright. And now, that one project is finished or one milestone has finally be achieved, we will check it off our list and turn our attention to the next goal because time is short and there is a lot of work to be done.