“So … how do I refer my own kid for Early Intervention?”
This was the question I asked myself aloud in the kitchen one day as I watched my two-year-old son play in the living room with his Cookie Monster doll. We had just celebrated his birthday, and he had a variety of new Sesame Street toys to occupy himself. I could have done without the talking Elmo, but he was happy. He looked adorable in that moment, with his sandy blond hair falling forward and blue eyes trained on the cookie-crazed blue monster in his lap, but I may have been a teensy bit biased. He was also smart, affectionate, and funny. Perfect, obviously. And yet, I worried about him. I know this sounds like a normal mom thing to do, but it wasn’t just general parenting anxiety.
My son had needed ear tubes to clear the constant fluid occupying his middle ear space around 18 months. He had never had a zillion ear infections like some other kids to clue us in to the problem, but the fluid was there all the same. A hearing test confirmed it was making it difficult for him to hear us speak clearly. The hearing loss caused by this fluid had delayed his speech development. It’s hard to learn to speak when you can’t hear what it is you are supposed to be repeating. I had never been so grateful to have taught him baby signs starting at six months. American Sign Language had given us a way to understand each other before surgery was scheduled … although I may have regretted teaching him the signs for “Elmo” and “candy.” He was making progress with the tubes in place and the fluid cleared, but still was not where he should be developmentally for his age.
I knew this, because when I am not desperate to keep my own kid alive, I’m working as a speech-language pathologist, in early intervention. For those of you not familiar with that term, Early Intervention (EI) is a program for children under the age of three with developmental delays and/or disabilities. It may also be called Birth To Three, Infants and Toddlers, or something similar depending on where you live. Some state’s programs work with children until the age of five. (I work in Massachusetts, so some more specific details of the program may vary in your area, but the general idea is the same. I can totally hear all the EI providers exclaiming “that’s not how we do it here!”). Children are evaluated at an EI center or at home (or even virtually, due to COVID). If testing shows them to be delayed in an area of development such as motor skills or communication, they are found eligible for services for the next 12 months or until the day before their third birthday.
In general, these services are home based, where a developmental specialist or therapist comes to the home to work with the family. This is often at least on a weekly basis, for roughly an hour at a time. The service provider coaches the child’s family on how best to work and play with their little one to improve their area of delay. It looks a lot like someone giving suggestions on how to best to play with your child … because that is, to some extent, what it is. Children’s work is to play, and that is how they learn best.
So here I am, a mother whose job it is to use my specialized (and expensive) six years of education to assist caregivers in helping their children to communicate … and I am now the one needing help with my own offspring. The Universe sure has a taste for irony. It was almost embarrassing. How could I help so many other children and their families, but not my own kid? I am his MOTHER. It is literally my job. I sighed. Yet as I looked at my little boy again, I realized that that was the issue. I wanted to be his mother. Just his mother, and not his speech therapist. I needed an outside view of my child, and for someone to give me strategies and suggestions for a change. I needed help, and I reminded myself that there was no reason to feel embarrassed or guilty about that.
In EI, we coach parents on how to rethink play and interact with their kids in order to help them meet their developmental milestones. Early intervention providers identify toys and activities that a child finds interesting and suggest different ways a parent may utilize those items with their child. For example, two-year-old Tommy may enjoy puzzles, and his favorite may be a farm animal puzzle. The provider’s job is to alter the way Timmy and his caregiver play with that toy to best target the area of need.
We may ask, “How can we play with that puzzle AND work on more language? Maybe we label the animals on each piece? We could make each animal’s sound (moo, baa, neigh). How about we model the words for our actions as we do them, such as ‘turn,’ ‘pull,’ ‘push,’ and ‘put in.’” These may seem like simple ideas, but they turn an activity the child enjoys into an opportunity to bathe that child in a whole new set of vocabulary. We don’t have to just count the pieces, or ask them to say please. A physical therapist may coach a parent to hold the pieces up high so a child with low muscle tone has to reach up high for them. An occupational therapist working on sensory regulation could suggest hiding the pieces in a bucket of rice so the child is exposed to new textures as they dig for the different animals. Most therapists and developmental specialists are trained to develop creative, personalized ways to to target multiple areas of need at once, which is called a transdisciplinary approach (in contrast to a multidisciplinary model where multiple therapists see the child to work specifically on their designated area of development.)
I could do all of these things, and had done this with countless families, and now needed to experience the situation from the other side. My son’s language was improving, albeit slowly. I also had concerns about his picky eating, and some sensory difficulties he seemed to have with certain textures. That kid would not touch paint even if it meant I gave him 1,000 Oreos, and the same went for Play-Doh. He also seemed to tire quickly when climbing and sitting unsupported on the floor, and I suspected he had some weak core muscles (sorry dude, you got that from me).
I knew he needed help with more than just speech, but like most parents, I found it hard to admit my child was anything but perfect just the way he was. It was just a tad embarrassing to have to refer my child to a service I provide for a living. I knew better, I knew there is no shame in asking for an evaluation, or services if he needed them. I reminded myself that the shameful part would have been knowing this support existed and choosing not to access it due to my bruised SLP pride. So I called. I didn’t wait to see if he just did better on his own, or if he grew out of his challenges. My son qualified for weekly visits with a developmental specialist and with an occupational therapist. He also attended a weekly EI playgroup, which let him practice interacting with his peers and following classroom routines. His progress over the next year was amazing.
Today he is a joyful three-year-old boy who never shuts up, and loves playing with other kids. He eats a larger variety of foods, and his strength has improved exponentially. I may be the only parent who applauded her child when he could finally climb UP the slide, which requires a good amount of core strength. I’m so glad I didn’t wait, and he didn’t miss out on those services.
The problem early intention providers are seeing is that parents and pediatricians are waiting too long to make referrals to have their child evaluated. Some families wouldn’t even know that EI exists, if they didn’t know someone else whose child has received services. They can’t ask for something they don’t know is an option. Others know about EI but think they need a prescription or referral from a doctor in order to have an evaluation. Pediatricians, DCF, NICU staff, and many other professions do recommend EI services, but parents can also self refer. Let me say that again.. You are the expert on your own child, and you can refer your own child if you have concerns.
Some pediatricians also seem to be hesitant to refer children too early. It is never too early. Even if that child is evaluated and found to have no delays, they can be re-referred anytime before they turn three if new concerns pop up. It’s not a one shot deal. For example, children are regularly discharged from services for meeting motor milestones only to be evaluated again and resume services due to concerns with their social skills or because parents can’t underhand what they are trying to say when they talk. Research shows that while some children will catch up unassisted, some 20% will need longer term support and there is no way to tell which of those two groups a child will be in.
Even as someone who works in the field, early intervention was amazing for our family. Having someone else to give me ideas on activities, tell me how to use strategies during the regular routines of our day, and to look at my son with a new perspective was priceless. It wasn’t always easy, and sometimes downright upsetting to have someone point out a challenge you didn’t even realize your child was having. Yet by my son’s third birthday, when we had to say goodbye to our providers, I was incredibly grateful that they had been in our lives. I learned so much about myself as a parent and about what my child needed to succeed and how to give it to him. Even with a masters degree in communication disorders, I needed help being educated in how best to be the mom my son needed me to be. And we are better for it.