Navigating Early Intervention

“Do you know how lucky we are?” Z asked me as we drove toward the school where we would receive the results from C’s Early Intervention Evaluation. “Seven highly trained adults. Seven. Gave him their full attention for two and a half hours this morning.”

“I know. I know you are right. I know.”

“We are so lucky, so privileged to have access to this kind of help for him.”

“Yes. We are.”

I had told him I was sick to my stomach over getting the results of the evaluation. We spent the morning sitting behind a two way mirror observing his test while answering hundreds of questions about him.

We watched the meltdown he had an hour into the test. They redirected him and got him back on track. We watched as he was able to focus. We watched him eat his snack and get back to testing and we watched him fade until he was asked if he was all done. “All done.” he replied firmly.

Midway through the process one of the evaluators came into the observation room and mentioned Sensory Issues and I froze as dread crept up my spine. After she left I found myself standing and delivering a wild and nonsensical monologue to another woman in the room that touched on over-diagnosis and over-medication of ADHD (not even the reason we were there) and how if you look at any kid long enough you start to see something wrong with them.

Before the outburst I’d told myself I’d stay cool. We were doing what was best for C and that is what mattered. This whole thing was not a value judgment on him or on our parenting.

And yet, suddenly I was the parent who did not want to hear it.

Looking back on the last year I realized I never wanted to hear it. Every time I explained to someone that C received speech therapy I would casually explain that he had terrible ear infections and health problems when his speech should have been developing. I’d slip in that he tested normal in all other areas. Except I’m realizing now I wasn’t casual at all. I’m sure that I seemed oblivious and petty and desperate.

The emotions aren’t new. The fear, guilt, defensiveness, and worry. How could I not be able to teach my kid to meet developmental milestones? What is wrong with my parenting? Is this my fault? And there is a stigma for services. How the hell do I get over my own embarrassment so I can teach C he has nothing to be ashamed of?

—————————————–

In New York the Early Intervention provider switches from the state for two year olds to the local school system for three year olds. So another set of standardized tests are performed. During the week leading up to the test he was observed in his preschool classroom. Wednesday a Professor from SU and two of her graduate students spent an hour and a half in our home watching C play and asking me tons of questions. Thursday he had a three hour block, just him and the testers. He didn’t make it to three hours. After two and a half little man was so exhausted he napped for nearly three hours in the afternoon.

This process is important. But man, it is overwhelming both for him and for Z and me. Watching your not-quite-three year old be put through a multi-hour standardized test sucks even if there are some play breaks. By the end it just felt unfair and cruel.

—————————————–

Z and I sat at the head of a conference table, surrounded by the seven professionals who tested our boy and listened to the results. Most of which were in the normal range. But there were new concerns about coping when he becomes frustrated. The only area he scored below normal was the emotional piece, the area he’d had the highest score in the fall.

In the past year his speech has exploded. We were shocked to find he scored average and slightly above average in the two speech components. His clarity is poor enough that we think the school system will grant continued service and we hope they do. He is not at the same level with his peers concerning speech no matter what the tests say. A year later we have learned Early Intervention works. It works. His therapist has been amazing with him. His improvement is due to many factors, but she is one of the most significant.

During the meeting it was clear I was struggling. When his low emotional score was disclosed I couldn’t help myself, I asked what I’d done wrong. How could he have improved so much in one section while falling behind in another?

One of the kind evaluators pointed out that these areas of development do not progress in a straight line. There are fits and starts.

Hopefully C will continue the speech therapy. It is up to us to decide what to do about the other piece. Do we want to see how he does for a year without extra services? Do we want to just deal with this now?

Z and I are on the same page. We want what is best for our beautiful and wonderful and loving boy. I was sure he’d qualify for speech and nothing else. I know my kid. I know him.

It is awful to spend a morning learning that your child, your heart, your love, hell — your job is struggling in an area and you were completely oblivious. The doubt has crept in, if I didn’t know this about him what else am I missing? Does he deserve better than me? Is this the ultimate stay at home mom job evaluation and did I just fail?

Z was right when we drove to the meeting. We are so lucky. C is so lucky. Yes, these services are free. But the process is involved. We have the resources to send our boys to a preschool that made us aware of Early Intervention and helped guide us through it. How many parents out there don’t have the resources or time or knowledge to discover that this is an option? How many parents are so busy working to provide a home and enough food for their child that they don’t know there is an issue with the kid until he or she reaches kindergarten? How to we help get these resources into the hands of families that need them every bit as much as we do?

I don’t know. But I do know that I need to be grateful. I must stop wallowing about how hard this is for me. It is a waste of time to obsess over my failings as a mother. C needs help. Z and I will make sure that he gets it.

beautiful c

This boy. He’s going to be more than fine. Photo by Ellie Leonardsmith.

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3 thoughts on “Navigating Early Intervention

  1. Such a heartfelt piece. Karen I felt your pain. It’s crazy how we beat ourselves up for every little oversight we feel we’ve made. Last night I howled with shame at myself for allowing my 20 month old to use a pacifier so long. Dentist had pointed out it was bucking his teeth. A small thing, and I’d only done it because at the time it’d been a choice between constant breastfeeding or no sleep, but boy do I feel like I’ve failed. But we don’t fail, do we? We’re actually doing pretty well, because we care so much, and we scrutinise ourselves all the time. Xxx

  2. I loved reading your post! I am a service coordinator in early intervention, and it really helps me to read the viewpoints of parents going through this process. Although our process seems a bit more family friendly (I work for 0-3), it still can be overwhelming. I just started a new blog which is aimed at just helping people by just answering their questions as they get ready to go through the process. It sounds like your little guy is making amazing progress and has wonderful supportive parents. Best wishes! 🙂

    • Thank you for your comment. Different perspectives are often helpful.

      I agree that the first round of EI testing (2 years) was less overwhelming. But on the flip side, the three year testing was certainly more comprehensive.

      Good luck with your blog!

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