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When I (finally) got pregnant, I had the normal mom-to-be worries and thoughts: what will my baby look like? Will this pregnancy make it to term? What is the due date? Will my child be healthy? Will it be a boy or girl? And I even asked myself: What if my baby is born with a disability? Although no amount of mental preparation can truly make a person “ready” for a new baby, I felt like the combination of this future-tripping and my type-A personality, my education, and experience working with children made me close.

The first curveball I was thrown was going into preterm labor. I was actually on my way to work at SLC when I could feel something was “off”. When I called the nurse, I was advised to go to the hospital. I was 36 weeks pregnant, just a few weeks to full term, but I knew about the important development that happens in that last month of pregnancy, and I was anxious. Needing to be in control, I drove my husband and I to the hospital.

One of the many doctors I saw over the next two days while they delayed my labor, mentioned that his daughter was preterm and “just had to have a little support through speech therapy”, but that many NICU babies can easily catch up. That assuaged my fears a little, but I was mostly concerned with the immediate concern of her being whisked away immediately after birth. After waiting such a long time for active labor, when I was in it, it was quick. After my first push, I heard the resident doctor say to the attending “oh! Is that the head??” It was. And after just two pushes, Eloise was born. They put her on me and she grabbed for my finger, squeezing it tightly, but I didn’t hear her cry. I didn’t want her to be taken from me, but I didn’t understand why they weren’t taking her to get breathing support (something I still worry had an impact on her development and medical history today).

Two long, gut-wrenching weeks later, our girl was finally released from the NICU and came home. Everything in the first few months were amazing. I adored being home with her and seeing all her development in the first two months of life. Luckily the way my husband and my work schedules are, he is with her in the morning and I am with her in the afternoon and evenings. Things were going great. Fast forward to 6 months later, when we were returning from Eloise’s first trip to visit family in California. On the plane ride home, Eloise was sleeping on me and her arm started twitching and didn’t stop when I touched it.  We already had her 6-month appointment coming up in a week, so I told her pediatrician about it. She suggested we go get evaluated by a neurologist at Seattle Children’s. Of course, the closest appointment was months away, so we waited. The twitching started happening more and was accompanied by a fixated stare and lack of recognition. This would happen between 5 and 25 times within a minute or less, increasing each time. When it happened 5 times in a row, I knew we needed to see a doctor immediately. My husband had taken the car to work, so my mom picked Eloise and I up and we went to the ER.

After a few nights in the hospital, multiple tests and pokes, it was confirmed that Eloise has epilepsy. That was 3 years ago, and we still don’t know why. We continue to do tests, mostly to rule things out. In addition to her seizures, I began to notice delays. Having experience with typically developing kids, I realized Eloise wasn’t hitting her milestones. Between her epilepsy, low muscle tone noted by her doctor, and these delays, we started investigating early intervention. Since about 8 months old Eloise has been in multiple therapies from physical therapy, occupational therapy, and speech therapy. She has attended the Boyer Clinic for children with delays and/or medical needs, and this September started at Broadview-Thomson developmental preschool, a program for kids with special needs. We may never know why Eloise is delayed or has epilepsy, and I am learning every day to live with not knowing. In the end, it doesn’t really matter, why, it matters how we move forward and give Eloise all the love and support she needs to be happy and healthy.

Although a little overwhelming at times, coordinating her care, I will tell you—early intervention is the easy (and most beneficial) part of the journey. The biggest obstacles I face parenting an atypical child are in my head. Most people would see and interact with Eloise and maybe not think she had any special needs. I struggle with knowing if I should tell other people, so they have an understanding of how she acts, and can have realistic expectations for her, but I also don’t want her delays and medical needs define her. For the other parents and kids at the park, I have to remind myself that their thoughts or opinions don’t matter and it isn’t necessary for me to step into every interaction and say “oh she doesn’t understand that”, or “she needs space”. Eloise is capable of establishing her desires and needs and won’t learn to find her voice if I am constantly providing it for her. On the other hand, when it comes to classes, school, and teacher/instructor-led activities, I do think I need to advocate for her and give her teachers an accurate look at where she is developmentally.

Parenting an atypical child also comes with some grief. You imagine the life your child is going to have and how you will provide that for them, but as I have come to learn, it does NOT goes as planned. I was the type of child who was shy, but obedient, and would do things like sit on Santa’s lap, and participate in a toddler dance classes and sports, and so I pictured the same things for my daughter. I know it is okay that she refuses to sit on Santa’s lap (I mean it is pretty weird….) and I don’t feel any disappointment in Eloise when these visions do not work out, but it is also okay that I grieve over the things I thought would be. It is also not easy seeing other children Eloise’s age doing things that she is still many months away from achieving. Seeing typically developing kids every day points the differences out to me regularly. I try to remind myself that I LOVE the 0-5 phase, and if Eloise is in it a little longer, then I will just soak up all the snuggles, exploration, and naivety while I can!

I hope reading about my journey to discovering my child has special needs has helped those of you who see your children struggling in any areas, or see other children doing things your kids can’t (yet). They aren’t broken, or unintelligent, or bad. Even if they are displaying challenging behaviors, that just means they need a little more support. It is not easy to ask for support with your child; it feels like you cannot give your child what they need, but it is freeing to trust other experts. Just like a financial advisor, lawyer, or doctor, I know that they can provide things that I cannot because of their expertise and my lack of it. I also know that if I do not get her the support and help she needs now, she will have a much more difficult time catching up later.

If you take anything from this blog (and accompanying list of Seattle area therapists) I hope it is that early intervention for your child can be extremely impactful, even life-changing and that there is no shame in being atypical or having an atypical child. I have heard of many pediatricians through the years saying, “Oh let’s just wait and see how they develop”. I know very well that children develop at their own pace, but I also know just how vital early intervention is. Advocate for your child. There is NO harm in getting them evaluated. If nothing looks concerning, then great, they will most likely acquire those skills on their own time, but if something does look concerning, then steps can be taken to provide support as soon as possible.

Seattle Area Child Therapies

 

SLC does not have a partnership, affiliation, or any direct in-school experience with the recommendations below. Most are places where our students have sought services in the past and/or present, or we have heard good things about. Some may request a referral from your pediatrician, and make sure to check if your insurance is accepted.

 

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