What My (Special Needs) Kids Have Taught Me

I’m running a bit late for blog against disablism day — last weekend was our big fundraiser, so it’s been a bit crazy — but I think I still have some pertinent stories to tell.
I work as a family service coordinator for Early Steps, the Louisiana state early intervention program. If you haven’t heard of early intervention (EI), the idea is that children who receive therapy at the earliest possible age are more likely to develop the childhood skills they need. Programs like mine help children with developmental delays and disabilities BEFORE they are thrown into a classroom with 30 other children and one teacher who is overwhelmed, underpaid, and struggling to handle a class with a wide range of abilities. The state pays therapists (occupational, physical, speech, nutritionists, etc.) to go into the home once a week and work with the parents to teach them skills to help their child, whether the child is having trouble holding a spoon to feed himself or not picking up speech very quickly. My job is to assist the family in finding resources to help them (from Medicaid to SSI to other non-profits that help them if they are hungry, homeless, unemployed, in foster care, etc.), to help families and therapists set reachable goals for the children at 3- and 6-month intervals, and to coordinate other therapy activities. I only work with children from birth to 3 (then they pass to another program), but the 40 kids I have on my caseload range from those with minor speech delays to kids with cerebral palsy, down’s, rare genetic disorders, microcephaly at birth, and just about everything in between.
Working this job for five months has given me the chance to encounter attitudes and resistance (from my friends and family, the families I work with, my co-workers, the state, therapists, and others) that both shocks and saddens me. My kids and their families have taught me so much about the world, and I wanted to share that here.
1) Disability is not a pity party. When I tell people what I do, I often get, “Oh, that must be so sad” or “how do you deal with that?” Deal with what? My kids don’t need your pity; if anything, YOU need their courage and their heart. These kids work and play so hard in therapy. I love visiting these children who teach me how to color outside the lines. Every day they show me the will and strength it takes to overcome people’s expectations and pity to be the strongest, happiest, best kids they can be. And if you have ever seen a child with down’s syndrome smile, you know you have met the happiest child in the world.
2) There is no such thing as “normal.” The more “evaluations” I see, the more I speak to therapists, the more I realize there is no “normal” child. We have this misconceived notion of when a child should learn a skill or how a child should perform a task. But the truth is, not every child will walk by 12 months, 2 days, 10 hours. Often the guidelines are just that – guidelines. If you are looking for a problem, many evaluations will find one (or more). Most of the evaluations done by the school and the state involve 5 questions at max in each developmental area. That’s bullshit. These “tests” do not determine your child any more than standardized testing does. Just like adults, children have their own personalities and time schedules. Some will walk before they crawl. Our culture is so conditioned to see a child and label them as “normal” or “not normal” that we do not understand the quirks and individual needs of each child.
3) We need more education and awareness. I can’t talk about this enough. People are unaware of this program. They are unaware of whether their child has a delay or a disability and may need some help – even many doctors have no idea how to address their needs. Many of my families balk at ideas like teaching sign language – babies understand signs before they can understand verbal communication, and both are effective in helping a child express his wants and needs. But some parents see sign language as foreign, scary, or negative. Families often won’t get help through government and non-profit programs because they are afraid of being charity cases or having other people accuse them of depending on the government. Parents don’t know where to go for help or how to advocate for themselves and their children. Often the parents are so overwhelmed and emotional because they feel like God has dealt their children a bad card and they cannot handle the medical bills, day-to-day difficulties, other people’s opinions, and lack of knowledge. All of these issues could be addressed if we discussed disabilities, if we worked to increase education – through the media, in schools, in medicine, and in communities, and if we recognized the damage of social stigma and misinformation.
Well, I need to get back to work. But I’d love it if you left me what you have learned in the comments – as a person with a disability, as a parent of children with disabilities, learning disorders, developmental delays, etc., as a person who works with people with disabilities, or as someone who simply recognizes that there should not be a (dis) in “(dis)ability” but instead a recognition that everyone is abled – we just perform our abilities in different ways using different means. My personal favorite is “(who are you dissing?)ability.”
P.S. On the problem of invisibility — why is there no category this post could fall into?