I asked Allison, the community leader on a parenting message board for children with speech delays and disorders, to write about her experiences with her son. Her experiences are not unlike many mothers who are searching this website for information. I hope you’ll find her advice insightful as you pursue answers for your own child. Laura
Mommy gut knows best. If you’re a mom, and you’ve got a gut feeling regarding the well-being of your child, odds are you’re right. And you should follow your gut.
My gut told me that when my son was 18 months old and only saying 2 words, that something was up. My gut was telling me that the staring spells he had been having since he was a baby weren’t “normal.” My gut was telling me that he should have been stacking blocks and doing a shape sorter better than he was. My gut was telling me that since he wasn’t even non-verbally communicating with me by pointing or bringing me by the hands to things, something was wrong.
So we had him evaluated by early intervention. Yes, he’s got a significant speech delay, so he qualifies for services, they said. But we also feel he’s significantly cognitively impaired because he couldn’t do a shape sorter (mind you, instead of putting the shapes in the correct hole, he merely lifted off the top of the whole thing and put the pieces in the easy way. Pretty good problem solving skills if you ask me!). My mommy gut told me that was VERY wrong. Maybe his inability to do a shape sorter meant something, but it sure wasn’t a reflection of his cognitive abilities.
We went to a neurologist to figure out why he was having staring spells. My gut told me that the doctor was right when he said they weren’t seizures, but he still had no explanation. My gut told me that the behavior specialist was right when she told me that he was not “on the spectrum” but wrong when she said that he merely had a severe communication disorder that would be corrected with intensive behavior therapy and then his speech would quickly follow even without speech therapy. My gut told me that, after 4 months of no progress with a speech therapist sent from EI, that she wasn’t connecting with my son or “getting” what was wrong with him. My gut told me that no-one who had seen my son had “gotten” him. I had to keep pushing until I found someone who did.
I finally found that someone, someones actually, in the form of a multidisciplinary team at a national university comprised of a neurologist, a psychologist, a speech language pathologist and an occupational therapist. They each individually observed my son over 2 days, pow wow’ed, and came up with his diagnoses: dyspraxia and sensory integration dysfunction. The dyspraxia explained his speech issues, his fine motor issues (such as the issues with the shape sorter), and his gross motor issues (like not figuring out how to point to things). The sensory integration dysfunction explained the staring spells. It all fit. And for the first time, my mommy gut said they were right!
It was at that point that we could FINALLY get down to business with the right therapy and the right therapists for my son. We found a speech therapist who specialized in apraxia, and within 10 minutes, had my son saying the letter /p/ in the word “up,” something the EI speech therapist tried, and failed, to do for 4 months.? We found an occupational therapist who could see exactly where his fine and gross motor planning difficulties were, and taught me how to teach him to work through those difficulties. Today, my son is a delightful, precocious 3 1/2 year old, with slightly immature speech who loves to do mazes (no easy task for a child with fine motor planning difficulties).
I tell you all of this to impress upon you one important thing as you travel down the road of discovering what may, or may not, be “up” with your child — that is, keep pushing, keep asking, keep searching until your mommy gut is satisfied. YOU are your child’s best, and oftentimes only, advocate. You truly know, in your heart of hearts, if what you’re being told by professionals is right. Trust your gut, maybe more than you trust their degrees. Many professionals have their own plans, their own agendas, their own pet projects, or even limitations in knowledge, that can affect their ability to properly diagnose your child or help you develop a plan of action to get your child the therapies he/she needs to make meaningful progress. Your only agenda is the well-being of your child — to help them live the best life that they are capable of living. Your interests are always crystal clear — helping your child is the number one concern. Follow your gut if it’s telling you that a diagnosis or professional opinion is wrong; keep searching until your gut is satisfied. You’ll never regret it if you do, but will if you don’t.
Allison is a mother to 3 young boys, including one who was diagnosed with dyspraxia and sensory integration dysfunction at the age of 2. Taking what she has learned while advocating for services for her son, as well as in a 40-hour class for, she has decided to go back to work as a special education advocate/attorney.