This guest post is a touching story with helpful resources for parents brought to you by Jen Dryer, a mother to two sweet and energetic boys, is a parent advocate for parents of young children with developmental issues. She works to support families with children aged 0-5 who have any developmental delays navigate the process, both logistically and emotionally, of getting their children the early intervention services they need. Prior to her work as a parent advocate, Jen was a teacher and literacy staff developer for 13 years in NYC public schools, and 5 years in DC area public, charter and private schools, and is currently a yoga teacher for kids and adults.
My younger son, Max, never crawled. Instead, he scooted. Quite effectively, I must say. But I never crawled either, so I just assumed he had the “tushy around” gene, and he seemed like a pretty typical child otherwise, as far as we could tell. Then some time after he turned 1, we noticed him staring up at the light fixtures with an odd expression on his face. Then between 14-15 months, we noticed he lost the few words he had and some of the gestures as well. Had it not been for my older son being an early talker, we would probably not have done anything and just waited, desperately hoping he would come around. Instead, we reached out for help and took action, getting Max a free evaluation and, when he qualified, free services to support his development. Tapping into the fantastic range of Early Intervention (EI) services in DC for Max was by far the best parenting move I have ever made, despite the many emotional and logistical hurdles I’ve had to surmount.
I share this story about Max, because it brings to light the incredible power of Early Intervention and provides a window into the incredible free resources available for children with developmental delays in DC in particular (these are available in all states in some iteration). But mostly, I hope our story can provide insight and inform parents, and inspire and spur parents to action, if appropriate.
Whenever I shared my concerns about Max, nearly everyone gave me seemingly reasonable excuses: he’s a second child, so I anticipate his needs more (eliminating his need to communicate); his brother was probably speaking for him all the time (not really, in our case); he’s a boy and they usually talk later; they all do everything in their own time – just look at Einstein, he didn’t talk until he was 4. Not for nothing, many people now believe Einstein may have had Autism… Even my pediatrician, whom I hold in high regard, dismissed my concerns, suggesting we just wait and see how he does between then and his next appointment.
We were lucky to have an experienced advisor in the family – my husband’s aunt Carol is an experienced EI specialist in Pennsylvania. We reached out to her, and she urgently encouraged us to get him evaluated as soon as possible. We had his hearing tested first, desperately hoping all he needed were ear tubes, since he had had a couple of ear infections.
Carol came to DC to sit alongside me for the audiology exam, explaining everything, which was remarkably helpful and comforting. When his hearing was deemed normal, she advised me right then and there to have the audiologist write us a referral to get him evaluated by DC’s EI program, Strong Start. Being entirely clueless about what that all meant, but so grateful to have someone who knew what they were doing walk me through this process, I followed her advice. With the referral completed, we set the ball in motion, as it is all legally time bound from there. Strong Start had 45 days to complete the evaluation and meet with us to review the results.
I am forever grateful to Carol, as she opened our eyes to incredible wealth of resources available to young children with developmental delays. Each state has a differently named early intervention program and structure, but all states are mandated to provide free services, meaning therapies and supports provided by professionals, to all children who qualify. The bar to qualify varies from state to state.
In DC, the EI program for 0-3 year olds is called Strong Start. For children from roughly 3-6 (officially, 2 years 8 months to 5 years 10 months), the program in DC is called Early Stages, which is based in DC Public Schools. Whether the child qualifies for free services or not, the evaluation is free! If the child is under 2 years 8 months, then the evaluation will take place at your home or child care center. If they are in the older group, the evaluation is at Early Stages’ offices, housed in the Walker Jones Education Campus, a public school on New Jersey Avenue, NW. Anyone can write a referral for a child to get an evaluation, as long as it’s signed by the parent. It can be submitted by the parents themselves, rather than relying on a medical professional.
Soon after we submitted Max’s referral form to Strong Start, he was evaluated at our home, and a few weeks later, we had the formal meeting to discuss the results. Carol previewed for us what what would happen in the meeting, and gave us her recommendations for the services he should receive. When we met, the therapists informed us that Max was 50% behind in 2 of the 4 different areas they examine, and 20% in another. In order to qualify for free services in DC, you need to be 50% behind in one domain or 25% behind in two. So, as we like to say, he was way overqualified, overachiever that he is… As much as I can joke about it now from this vantage point, as a parent, you can probably imagine that all of this was a devastatingly emotional experience for both my husband and me.
They also mentioned then, that although they did not diagnose at that age (now they often do), he displayed symptoms of Autism Spectrum Disorder. When they dropped what I called the “A-bomb,” I felt my heart drop into my stomach and a wave of nausea overtake me. It took me months to come to a place of acceptance and to make peace with it.
He started speech and developmental therapy within a few weeks, and we added on occupational therapy a few months later, and his progress was tremendous. At his re-evaluation one year later, he went from 50% behind in language to average range (10% behind), and didn’t even officially qualify for continued free services, since he was not 25% behind in even a single domain — from 50% behind in 2! Luckily, the evaluators saw the progress he was making and that he needed continued therapy, so they gave him a clinical override to continue free services. It was the best of both worlds: significant progress and continued free services!
We started another therapy called ABA (Applied Behavior Analysis) shortly after his 2nd evaluation, and it has been tremendously helpful for him. Including the ABA hours, he ended up getting 11-12 hours of free therapy each week, and a fantastic platform through Strong Start in which all the therapists could share notes and work collaboratively. The therapists have worked with him at school and at home, and thanks to EI, he is not only up to par with his speech and communication, but is starting to finally pay attention to, play with and communicate authentically with peers. For a 4-year old Autistic child, that is pretty awesome.
He may always have special needs, and will likely be a quirky guy for the rest of his life, but it is patently clear that EI has dramatically improved the trajectory of his life, and that my ability to let go of the fierce call to bury my head in the sand has resulted in a real possibility that he will be as close to “neurotypical” as possible by Kindergarten. He will likely be able to have real friendships, and will become a productive member of society.
Already, his differences have gone from significant to subtle. People are usually surprised when I tell them he is Autistic. We have been incredibly lucky to have had support from Carol, but make no mistake, I have done an incredible amount of work, research and active advocating for him. We feel incredibly lucky to have found these resources and to have had this help for Max.
From this place of gratitude, I am deeply committed to helping other parents whose children have developmental delays navigate this complicated and emotional process. I know how hard it is to break out of the space of denial and to resist that temptation to just wait and wish it all away when we see signs of delays in our children’s development. However, getting evaluated and getting services early, especially before age 3 while the brain is most malleable, is truly critical. We need to trust our gut and our instincts as parents when we see something that seems amiss in our children, and take action as early as possible. The evaluation is free, and really, no one wins by waiting.
Other relevant resources: