Raising a child with special needs is like spending your entire life renovating a house. Renovating a house is a huge undertaking; it can sometimes be really messy and ugly. Occasionally, your work uncovers a rare gem that would never have been discovered if you hadn’t started pulling back the layers of wallpaper in that &@#^ dining room! As the wife of a handy husband, I have lived through renovations in each of our three houses. As a result, I think I am an excellent source to make this comparison. I’d like to break it down in 3 easy (har har) steps.
Stage 1: Lofty Goals
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/whatever and says “this will be better and cheaper than if we hire someone!” The partner is skeptical about the project’s feasibility but her loved one’s enthusiasm sways her and in a show of support she says “Ok! Let’s do it!”
My daughter’s Sensory Processing Disorder diagnosis was met with relief. We weren’t crazy. Something was wrong. But, we were confident that we would overcome these hurdles quickly. We dreamed of the near future when calm would return to our lives. Our friends told us “She’s so smart, she’ll only need an IEP for 6 months!” Three years later we have had two IEPs, additional therapies, glasses, building level services, and several other diagnoses. I can’t help but look back at my naive self and shake my head.
Stage 2: Re-evaluate
Enter stage two of the renovation or what I like to call the re-evaluating your plan and timeline stage. At this point you have pulled down the wallpaper 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??”
This is the stage where you tell your very pregnant wife that the baby’s room might take longer to prepare than you thought. You promise that the baby and your mother in law will have a place to sleep before the baby arrives and quickly get back to work.
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 begin to consider giving up and just hiring someone to do the job. Is the sense of accomplishment really worth all of this hassle?
This renovation stage 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.
In our parallel SPD world, this is the time that occurred after we had our diagnosis and our child began receiving services. We thought life would be smooth sailing. Only it wasn’t.
Quickly your providers begin to notice things. The professionals begin to comment on her eye tracking, notice that she doesn’t cross the midline and ponder on the fact that the behavior they witness at home is not what they see in the therapy session. You lay in bed at night and realize there is no 6-month fix. This is going to take a lifetime.
During the diagnosis phase, everything moves fast. You get your diagnosis, you have an IEP meeting, providers are scheduled and services start. Then, the hard work begins and everything becomes a struggle. It’s hard to tell if your child is making any progress and you get frustrated. So you buy books and read every page. You join online support groups, searching for help. As a last-ditch attempt to help your child, you start seeking alternative therapies. And then one day you find yourself at an Eastern medicine workshop holding jars of herbs buying into what the nutritionist is saying. You stop and look around and think, never in a million years did I imagine I would end up here!
Stage 3: Home Stretch
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 gave it your all, asked for help with the aspects of the project you couldn’t do yourself and 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 all parents of children with special needs, this stage occurs when your child achieves something that 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. When the warmth of pride and tear-inducing joy bubbles up inside of you and the tightness in your chest relaxes slightly. All special needs parents have stood in that one beautiful moment. We have set aside the knowledge that future struggles lie ahead. We take a breath, look at our beautiful children and appreciate the hard work that has happened to help them shine brightly. Then we roll up our sleeves and get ready to work on the next goal.
Here’s to growing and learning one renovation at a time,
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