When someone tells you your child has dyspraxia and sensory processing disorder, you really do not know what it means. You might have the actual definition, might have the facts, or the list of symptoms. And trust me, those things are immensely helpful. But once you close the book, or “X” out of the website, you are left to turn around an look at your child and wonder what does it all really mean to your child’s life? How does knowing that scratchy tags and too tight clothes really translate into a Monday morning routine? How does knowing they will struggle with balance, throwing, or writing help your child blend into a regular days activities?
Some of the hardest times for parents of a child with these disorders is to learn how to take the information you read about, hear about or learn about on website, facebook pages or support groups and somehow translate all those words, terms and advice into something that can help YOUR child in their day-to-day life, into those moments when they are screaming because they cannot stand having you touch them to help brush their teeth or those moments when they are writing their name and you are sure that the letters you see on their paper in no way look like the letters you know comprise the alphabet. Those are the times when you simply wonder how do you make it all mesh?
I can remember so early on in our journey when Elizabeth was three, trying to run a full days worth of errands. Only to have her meltdown after one store, where she screamed in the check-out line, and went stiff as I went to put her in the carseat. I learned a fact that day…do things a little at a time. set small goals…to be okay if you end up having to go alone to finish the rest.
When she could not handle the noise at the library at storytime…when we accidentally arrived at the time it was in session…I learned a fact that day….always call ahead to see if anything is going on at the library or park BEFORE you go…and if you goof, to be okay coming back another quieter day.
When we went for long walks, when she was little, only to have a small rise in the sidewalk seem like a mountain to her dyspraxic, motor abilities and we would find her on the ground literally screaming from the fall as well as the blood. The first aid that would follow was like torture to her, she hated having someone hold ice or pressure on any part of her….we learned that you have to walk near her and keep your eyes a bit ahead so as to hold her a bit on the uneven parts…and that sometimes staying home is okay.
Oh the learning we did!! The way we tried to bend the world to meet Elizabeth…the way we worked so hard in therapy to get Elizabeth to bend as much as she was able to try to meet the world halfway. Our children are so complex that what works for one may not work for the other and what makes one child cry could actually be the sensation another is seeking. Our learning is the key to their success.
All of our learning is never in vain…As parents we have to learn about our child, as we go, once we have that information we need to share it with those who are close to our children. To help them understand. Then when our children get bigger, change and grow,all that new information can go to their educators, those in the school system, with the hope that they will not have to learn about our children for themselves, but will understand our child from day one. Through our learning, we hope to have our children get the best care and support possible in their days. …..they change, we learn, and on and on……….
I saw the little red circles on the computer table, I looked up at Elizabeth who was on the computer and noticed her red fingers and a mutilated tissue with red dots on it…..a nosebleed…”UCK” I thought, as historically this type of scenario is a rough one… the blood and pressure thing again.. But instead…I learned she has matured enough to let me help her hold the tissues, squeeze her nose and breath calmly… yes we did it for over 5 minutes and again I learned that day.
Wishing everyone a peaceful week.