When Special Needs Aren’t Special Enough

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My son soaking up the sun.

As I have mentioned in previous posts, two of my children are biological and two are adopted. And as I have stated before, I love all of my children equally and differently. This piece is about our second born and our first walk through adoption.

When we brought our son home from Florida, we knew there would be a few bumps on the road. He was born with a few medical complications (all of which have been miraculously healed). When we signed on the dotted line, we were told to look for certain problems like hyperactivity, sensory issues, and possibly even mental health disorders. We knew the risks but were privileged and over-the-moon to bring him back to Texas.

His first 18 months were smooth sailing. He was a champion eater and sleeper and easy going. However, as he approached his second birthday, his tantrums really picked up in intensity and duration, despite clear, consistent boundaries from my husband and me.

He started throwing screaming fits that were lasting longer than 45 minutes. Over time, his sleeping patterns deteriorated, and he quit sleeping through the night. He became a picky eater. He had difficulty with social interactions and play dates. He could not master toilet training even after a year of trying. Overall, parenting him just got hard. Really, really hard.

And let me just add this — all parenting is challenging, nail-biting, tiring work  — whether your child has special needs or not. However, based on my experience and observations, my little one was not thriving. And I was reaching a breaking point from exhaustion.

When I brought up some of these issues with our (then) pediatrician, she was dismissive of my concerns. So I switched pediatricians, and this made a world of difference. I thought switching doctor’s would be a big hassle of paperwork and mass confusion, but it wasn’t. If you have concerns about your child’s development or behavior, find a pediatrician who takes this seriously and is on your team.

The first thing our new pediatrician did was schedule a one-on-one consult with me. No children allowed, giving me a chance to discuss at length my concerns for our son. In the past year, our pediatrician has referred us a to a developmental pediatrician, play therapist, gastroenterologist, geneticist, neuropsychologist, and psychiatrist. Like I said, I needed someone on my side to get the ball rolling!

I wish I could write that our son now has a clear diagnosis of what is going on, but he doesn’t. Different diagnoses have been thrown around. Doctors have mentioned any and all of the following: ADD, Sensory Processing Disorder, mood disorder, conduct disorder, Oppositional Defiance Disorder, Fetal Alcohol Spectrum Disorder, anxiety, OCD, and autism.

We have been able to rule out some of these, but still don’t know exactly what is making life so difficult for him. Whatever diagnosis he does eventually receive, it will be an invisible disability. He will continue to look healthy and normal, but will most likely always struggle with daily living, making friends, and emotional dysregulation.

For a long time, it felt like our son was falling through the cracks. We had several specialists recommend ABA therapy for him, but without a medical diagnosis, insurance won’t cover that. Hence, the title of this post . . . I know I am not alone in this. There are thousands of other mothers out there, who know something isn’t quite adding up with their child, but they can’t put their finger on it.

I clearly do not have the answers, but I do have a few suggestions. Be persistent with your child’s doctor. Keep asking questions, keep insisting on getting answers. If your child is under the age of three and missing developmental milestones or showing concerning behaviors, contact Early Child Interventions in Tarrant County, and have him or her evaluated. You do not need a physician’s referral for an evaluation.

sensory processing disorderI also suggest reading some of these titles: The Sensory Child Gets Organized, Raising a Sensory Smart Child, Bipolar Kids: Helping Your Child Find Calm in the the Mood Storm, and Easy to Love, But Hard to Raise

Read and research, then read and research some more. I used to be a little embarrassed coming to a doctor’s office with a long list of questions and research, but those days are long gone.

Most important, find a support group. It took me over a year to figure this out, but Facebook is the way to go with this. Whatever diagnosis you think your child might have, there’s a Facebook group for that, and it’s an easy, fast, non-judgemental way to have questions answered and struggles validated.

The Fort Worth Moms Blog offers many online Neighbor Groups, one of which is the Moms of Special Needs Tarrant County.

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Emma
Emma is the wife of Ford and mother to four: Lewis (2010), Teddy (2011), Archibald (2013), and Addie Cate (2013). She is both a biological and adoptive mom and wouldn’t have it any other way. Emma and Ford tied the knot in 2009, and quickly went from a family of two to six. Before Texas was home, she spent her college years in Mississippi; and her childhood in St. Petersburg, Russia where her parents serve as Protestant missionaries. Though she is fluent in Russian, she doesn’t find much use for it on playdates in the metroplex. When she is not buying diapers in bulk, Emma enjoys re-reading Austen and Bronte novels, napping, and the occasional visit to the Kimbell Art Museum. She dreams of one day sleeping in, but till then she is enjoying the long, lovely days at home with her crew of toddlers and babies.

3 COMMENTS

  1. Thanks for sharing your story Emma. One resource that many parents don’t know about is your school district. If your child has a disability, the district is required to provide services from the time the child turns 3. That means that when your child is about 2 1/2 (or anytime after), you can request an evaluation. ECI also often refers kids. You’ll need to have a pretty good reason to request the evaluation like a diagnosis from a doctor or significant developmental concerns, which can include social and emotional issues. You can look up Texas Special Education Eligibility Categories (there are 13). The criteria for identification of an educational disability is usually somewhat different than what your doctor would look for because schools have an educational focus in identification and services. As someone who does these evaluations for suspected Autism and Social/Emotional/Behavioral issues for a school district, I can tell you that parents often worry that the evaluation will not be very good because it’s through the public school and free, but we often provide more thorough evaluations than some private evaluations that I see. Evaluations for kids who have emotional and behavioral issues and are not yet school age are sometimes difficult for several reasons including the nature of mental health issues at that age and that we need to demonstrate that it is occurring in multiple settings to a significant degree and would impact education which is hard when a child isn’t yet in school. Long comment, but I want parents to be aware of that resource!

  2. Emma thanks so much for sharing this info! You’ve been such a great mom for me to bounce ideas off of and share what’s helped in your situation. Thankful for your voice as it can be very isolating.

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