Special Needs Mama
A Little Look at My Life with Lennon
We started noticing that our son, Lennon, was a little different when he was about one. It was more than just a speech delay or a developmental delay, this was different. Maybe it was just a mother’s intuition, but I’m a big believer in trusting your “mom gut”.
From there a team from Early Intervention became a staple at our house – a revolving door of folks with titles like Developmental Specialist, Behavior Technician, Speech Language Pathologist, and Occupational Therapist. They were there to work with Lennon and to train me on how I could best work with Lennon and his challenges. Some of the obvious challenges included a clear lack of comprehension with verbal and nonverbal cues. He would not respond to his name; he had no words – just grunts and noises – no way to explain to us his needs and wants. Of course, there were more, but those are the ones that came to mind as I write this.
By his second birthday we had an assessment scheduled for him and three months later he had an autism diagnosis. The word autism can be scary enough for a lot of parents, it didn’t really phase me because I already knew. What really put it in perspective was the wording on his diagnosis.
“Autism Spectrum Disorder, with accompanying intellectual or language impairment. Social Communication requiring very substantial support. Restricted, Repetitive Behaviors requiring very substantial support.”
The recommended genetic testing to rule out an underlying organic condition that may contribute to symptom presentation and Applied Behavior Analysis (ABA) therapy to focus on engagement attention, functional communication, and social/play skills.
This might sound familiar to many of you, but I had never seen any type of diagnosis, let alone one like this. It was a bit of a reality check. As I read the paperwork it was filled with terms like “clinically significant” and “at-risk” and “severe symptoms” and “extremely elevated.” What was abundantly clear was that we had a long road ahead of us. We got that ball rolling and within a month of receiving his diagnosis we were enrolled in ABA.
Lennon is a wild man above all else. If he’s not eating (which he also does plenty!) you’ll find him running and flapping and jumping. He’ll stare at the ceiling light and spin about on his tip toes, never seeming to get dizzy. He’s a sensory seeker, craving lights, movement and colors. And while these may seem like fun, almost typical, kid activities we see negative sensory seeking behaviors too. Everything goes into his mouth. He bangs his head repeatedly on things. He grips items (and pets and people) so tight his whole-body shakes. We do a lot of massage and squeezes throughout the day to help calm and regulate him, but it doesn’t always help.
A year into therapy and we’ve seen bits of progress. His eye contact has improved, and he can attend to tasks longer. I’m still not sure he knows his name – sometimes he looks, more often he doesn’t. He still doesn’t understand how to point to show me something he wants or finds neat. He verbalizes mostly in grunts or cries. We are working towards a Picture Exchange Communication System (PECS) but there is quite a long way to go.
We fill free time in our schedule with social activities – dance, gymnastics and outdoor playgroups. And while there are many places working to be inclusive and accommodating, you’d be surprised at how often we’re told “NO.” He can’t be in three-year-old group because he isn’t ready yet, he can’t join the two-year-olds because he’s so much bigger than them. He can’t do a lot of activities or playgroups (even the ones for kids with special needs!) because he isn’t potty trained. It’s a constant struggle.
As a mom it feels lonely. I never feel like I am doing enough. And the mom-guilt when I even attempt to do something for myself is almost too much. But for those of you on this journey with me, please know that you are not alone.
Resources I’ve Used or Checked Out
Special Sources Magazine
The Bible for Special Needs Parents in Vegas. This publication goes to print twice a year or can be viewed online. It has listings for a wide variety of providers, special events, businesses that cater to differently abled children, and more. When I first started this journey, this was my go-to magazine.
This organization walked me through the entire Individualized Education Program (IEP) process, and they have a great collection of webinars to support you and your family.
Sometimes you just need to talk to someone who “gets it” and FEAT offers monthly support groups including a dads only group and a Spanish speaking option.
Nevada Early Intervention
I was shocked to hear that some people don’t know about this. Long before you receive a diagnosis you can receive services FOR FREE. This includes speech therapy, occupational therapy and a slew of others.
Here they focus on independent living skills, both at-home and in the community. They also have dance! I couldn’t begin to tell you how excited I was when I heard this. We signed up immediately!
From social classes and teen nights to job training and private lessons, they tailor their programs based on an individual’s need.