How We Became a Special Needs Family (the diagnosis)

Often, other moms ask how I knew my son was on the autism spectrum. I can share our story, but I can’t reassure them that it was a set of very obvious things. Every diagnosis story is unique. It’s important to trust your instincts with your child and seek out information, screenings and early interventions. We can say that is the key reason our family is thriving today.

So, here’s our autism story….

The Most Perfect Baby

He was my baby that was a clutch sleeper and eater. We took him everywhere because he was so wonderfully behaved and extremely calm. Physically, he was strong and coordinated and, in his baby way, got along with other babies. He hit all of his developmental milestones on time. We did the MCHAT and the potential for autism was pushed aside.

Then things changed drastically.

Terrible Twos or Something More?

262805_10150271863424802_6693234_nAt around 15 months (and during the 3rd trimester with my second child), he began melting down a lot. In hindsight, I can see that transitions triggered a meltdown. But, he was also about 2 years old, so I received a lot of unsolicited advice that it was just the Terrible Twos. I was frustrated and humiliated that my toddler was unpredictable and usually radically unhappy. I didn’t want to go anywhere—it was too hard to get him out of the house and then he didn’t like where we were at and, about the time he started liking the activity, it was time to leave and that meant a meltdown. I couldn’t win and I was extremely depressed.

Steps Towards Solutions

Because he was so young and had conflicting outward symptoms, he wasn’t referred for an autism evaluation. But, it was suggested we try Parent-Child Interaction Therapy (PCIT). And while I was happy to begin trying to solve some issues, it made me feel like an awful mom that I clearly needed to be coached on how to parent.

PCIT really helped very quickly. If you’ve never heard of it, check it out. At the end of our sessions, it was recommended that I have him evaluated for autism. We decided to have it done at a private practice because my husband’s employer (Microsoft) would cover it and we could move forward immediately.

An Asperger’s Diagnosis

The diagnosis, at age 2, was Asperger’s (Autism Spectrum Disorder) and ABA therapy was recommended.

I was both devastated and incredibly relieved. My gut instincts had told me there was something behind the meltdowns that I couldn’t figure out.

I began to learn a lot about the anxiety my son was feeling, what triggered it and how that made him act. Then I was taught techniques to help him. I am not a giant fan of ABA therapy—it mostly just gave me a break and, after 13 months, we discontinued it because it seemed odd to me that my son was being taught social skills in a room in our house with an adult—while he felt frustrated that he couldn’t go outside and be social with peers. The real social interactions are sometimes difficult—but he can do it (with varying levels of success from day to day and across unique kids—but he does it).

Therapies, Evaluations, New Diagnoses and Discovering Giftedness

We took a year off from his therapies during kindergarten (he was in a general ed class with no accommodations) to see where we were at and because the new schedule was overwhelming for us all. A bit of an aside—I see therapies as scaffolding and sometimes you need to pull away the scaffolding and see how the building is progressing on its own. As a family, we went back and did more PCIT and that was really beneficial in getting us all on the same page with discipline and expectations. .

After an annual evaluation in May, a few more diagnoses came to the surface (generalized anxiety and dysgraphia) so now we are doing Occupational Therapy (OT) and Cognitive Behavioral Therapy (CBT – focusing on the SuperFlex curriculum) and it’s been really great (we adore the pediatric therapy organization we use called Encompass Northwest). The evaluation also revealed how incredibly gifted our “disabled” son is—and has given us some keys to unlock his potential even further (for example, his dysgraphia was holding his testing performance back and now that is being resolved).

At this point, I have to say how thankful we are to Microsoft (employer) and its commitment to providing comprehensive insurance coverage for autism evaluations and therapies. That’s a different blog for a different day…..

Hard Work, the Right Tools and Stronger Parenting

He’s 6 years old now—and every day I learn something new and encounter challenges as well as delightful surprises. There’s no easy fix for his diagnosis—but our life is wonderful—even when I’m super frustrated (I thought I broke a vocal chord yelling last Saturday…I really did…turns out we all needed naps), it’s going to get back to good—I trust that I have the tools to get there.

We do many things differently than “normal” families and simple things can look different for us and often require a lot of hard work, which leaves me mentally, emotionally and physically exhausted sometimes. I’m getting better at not internalizing what other people think of autism, my kid’s outward behavior (his invisible disability) and how I parent him.

In a lot of ways, his diagnosis forces me to be a more organized parent. For instance, I planned the crap out of this summer and we had a lot of structured fun (which makes the kids really calm – last summer I planned nothing and we were a collective wreck). Summer enrichment camp every morning, then a nap (I so nap, too and it’s delicious), then a playdate or outing or planned down time at the house (crafts, science project or sometimes just a movie). We got a trampoline and a giant pool and a projector and had a lot of fun in our backyard. Weekends were reserved for family time.  We travelled to see family and friends and had a week with just us. We all got really great tans and ate hundreds of popsicles. The boys and I got to know one another better, we got closer and we also really annoyed each other sometimes (oh YEAH I’m ready for school to start). Next week, the grandparents arrive and the kids look forward to moving at “retired speed”. It will probably involve a lot of donuts, soda pop and ice cream. They earned it.

So, I guess our autism story is a journey we are still on.  You could check in with me in a year and I could be feeling a whole new set of feelings about this. But, I’m committing to staying positive and seeing the gifts.

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3 thoughts on “How We Became a Special Needs Family (the diagnosis)

  1. Thanks so much for sharing a bit about how your journey started. My son on the Spectrum had anything but a straightforward trajectory…and unfortunately so many of his Spectrum needs were eclipsed by pressing medical issues. In a way I envy how seemingly smooth your process sounds. What a blessing to have had access to quality therapies at a young age and to have adequate insurance coverage to access them with seemingly relative ease. Getting my son’s Spectrum needs addressed has been virtually a lifelong battle and so many times it has been incredibly frustrating. Our financial situation meant we were constantly left with only the tidbits the “system” (school, community mental health, medical when covered by insurance, etc) provided and the “benefits” varied considerably…and have spent much of this time making things up as we go along (to loosely paraphrase Indiana Jones in Raiders of the Lost Ark)…

    Anyway, now that my son is 20 and has “graduated” from high school, it may be time to revisit some of our own journey and reflect on how things developed historically and gain some greater understanding for the “where do we go from here?” questions.

    Thank you also for listing a number of the blogs you follow here as they have been helpful in steering me toward other families on the Special Needs roller coaster…and reading about other people’s experiences can be such an encouragement, inspiration, and even a challenge as we continue to grow in grace, peace, and strength in the process of navigating special needs family life.

    Blessings & Best Wishes,

    Valerie Curren

    …writing occasionally at SpecialConnections.wordpress.com and JournalingForTheJazzman at CarePages.com

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  2. Thanks for the comment — I really respect what your “generation” of special needs parents has to say and the challenges you faced. It seems like the journey now is more smooth than 10, 15, 20+ years ago. And I feel like awareness/interventions might be more readily available in the Seattle area, where we live, with tech companies like Microsoft offering benefits and careers (eventually) for folks on the spectrum and their families. I’ll look forward to checking out your blog.

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