When you have a child with special needs, determination becomes second nature and frustration just settles into your bones. There’s a weariness and a wariness that comes with parenting a special needs child; I am often unsurprised by information from doctors, therapists, teachers and specialists. You can’t surprise me. I live IN it. The extremes of joy and pain, of exhaustion and elation. I get it.
The genetic test we took when she was 10 months old showed that baby girl had a de novo mutation. She has a megabase deletion on chromosome 6p. She’s missing a significant portion of her DNA on which sits about 42 genes. Of those 42 genes, geneticists have yet to determine what 10 of them even relate to. We know 6 other kids in the world that have a deletion that is similar to hers, and each gene expresses itself differently in different people, so there’s not much to go on.
Long story short, we don’t know what is coming and neither does any medical professional. We can guess and predict, but I’d rather not. Instead, I’d like to present her with every possible option to become the best version of herself at each stage of her life. This includes at school and at home.
So, in recently creating a presentation for local school speech therapists “from a parent’s perspective”, I’ve come up with a list of things that I need from every teacher and therapist as we start our relationship.
- Patience: We are doing our best. This is so hard. I know a few therapists that had special needs children, and they told me that their entire outlook changed once they had a special needs child to care for. Where they previously rolled their eyes when a parent said that they didn’t have time to work on weekly goals, they now spoke of empathy. Where a regression or frustrating visit was previously blamed on parenting, they now saw a bad day and provided words of encouragement. We are trying to do PT, OT, Speech, cook dinner, clean the house and spend some time with our kid just being a kid. Sometimes it’s more important to just spend time with our kids. Sometimes it is a struggle to just get through dinner.
- Advocacy: We are exhausted from advocating on our own. We know that the school has limitations, but please fight for our kids as if they were yours. At IEP meetings, don’t nod and smile – help me with data points and suggestions. Please don’t be afraid to speak up. I am struggling not to cry – I need you to support me.
- Empathy: I live in a world of shame. I’m ashamed that I didn’t figure this out sooner. I’m ashamed that I missed the opportunity to sign up for something. I’m ashamed that I forgot my daughter’s medication one morning last week. I’m ashamed that she spilled on herself at breakfast and I didn’t have time to clean it up. I’m ashamed we were late to school last week. My shame often shows up as anger and embarrassment. I need your empathy and understanding.
- Continuous improvement: Please, please, please accept help both from me and from the experts. Please never get to the point where you think you know it all. It is so incredibly disheartening to get halfway through the year and find that we’ve all wasted precious time.
You are so important to our families. Thank you for spending day after tireless, thankless day with our children. We love you and we need you.