It’s hard to imagine what it is like to live with someone who has sensory processing. Often times, as with her digestive system and diet, we are told that we are exaggerating or I have even been told that I want my daughter to be autistic. No I don’t, I just want her to have the same support and funding as a child with autism. The two used to be one the same spectrum, the autism spectrum, but a few years ago in medical terms, SPD was taken off the spectrum leaving it without funding and often times leaving parents fighting to get services for their child.
Many occupational therapists and physical therapists have to use various codings because most insurance companies will not cover visits for SPD. Not only that, but we have to buy all the equipment for the therapies at home. There are places that offer help off setting the cost of equipment for autism but won’t for SPD. To think, if she was diagnosed one or two years earlier, she would have been diagnosed with autism instead of SPD and she would be able to get all these services? Don’t get me wrong, I do not believe she has autism. Other than the usually emotional behavior issues that can come with SPD, she socializes just fine.
This is the medical, insurance, and financial side of raising a child with SPD. Now imagine having a child that is constantly moving and spinning because he or she cannot get dizzy so his or her body is seeking that stimulus. Can you imagine the safety issues that would cross that parent’s mind every second of every day? What if the child was hyper-sensitive to pain and screamed at the smallest injury? Opposite, what if the child as hypo-sensitive and hardly felt pain and was always on the move? What happens when the child’s brain is always going and they need help calming it down in order to go to sleep even into the years of ten and twelve? Will my child every learn how to use an inside voice? Have you ever had to say, “Just be glad that he or she is in season appropriate clothes,” because one fight was enough for the morning and your child was not wearing snow/heavy boots in May despite needing weight on his or her feet. Have any of these crossed your mind: I wish I could take my child to a firework show for the Fourth of July. I love the holidays, but all the lights, music, chaos, excitement, change, etc. it is all to much stimulus for my child that I wish I could just skip the holidays every year. I wish feeding my child wasn’t such a chore, making sure food doesn’t touch or that it is the right texture.
These are just some of the many thoughts, questions, worries that go through a parent’s mind every day when their child has SPD. Yes we go through the phase and often wish we could just change the child, but then we are reminded that God made the child this way for a reason and all we can do is love him or her the way he or she is and be there to guide him/her through life. There is not a minute of peace for a parent of a child with SPD because we are always worrying more than others, questioning more than others, exhausted with the day in and day out, and more than anything we are constantly fighting for our child to have equal treatment rights because their struggle is real. It’s real and it is not going away and neither are the parents that will keep fighting for our children.
“Why me?,” because I have found that each parent who has been given a child with SPD has been blessed. That mom or dad sees life in a different way. Maybe they needed to learn how slow down and take time to relax and enjoy when things go right. Many they needed to learn how to plan. Maybe they need to let go of the idea of having the perfect child. Whatever the case may be, I can honestly say that having a child with SPD is a blessing. Yes it is a lot of work and a lot of worry, but the blessings are amazing as well. Kyra’s SPD makes her truly unique in every sense and it is impossible to not look at the world differently while helping to guide her through life with her struggles.
So before you judge, just remember, we are with these children everyday, we know these children better than anyone, and we know what we are talking about. Until our children are ready to be their own voice, you can count on us to be there voice. Now ask yourself if you could live in my shoes or any other parent of an SPD child and sit there and ask the child to change or tell the parent that he or she is exaggerating .
image found on pinterest