still adjusting

Two energetic, almost pixie-like women in their mid-50s sit beside Z at the table, playing and occasionally giggling while encouraging Z to eat her largely untouched lunch. It’s a welcome change from the coaxing that’s usually my job. Trying to make food fun. Ensuring that she gets enough calories, enough protein and iron. Hoping to fill her little belly so she’ll keep gaining weight, so she’ll sleep well. So we’ll all sleep. Trying not to make it feel like work for everyone. This is my job, 3-5 times a day. Always, really.

Today, however, we’re gathered in a small office to talk about Z’s progress over the past few months, since she began receiving services to address delays due to her prematurity. Our caseworker convened Z’s incredible team of talented and dedicated therapists to discuss Z’s diagnoses and how she’s been responding to various forms of therapy.

When Z turned 18 months old (adjusted age) and was not yet walking steadily or talking much, I knew it was time for an evaluation. Yet I was shocked by the cost of HMO co-pays and uncovered services, even for evaluation and testing. Most therapy would not even be covered unless attributable to medical rather than developmental concerns. So our outrageously expensive out-of-pocket health plan would not cover the recommended services (speech, occupational, physical and feeding therapies).

Z is now two years old and her original due date just passed, so we no longer “adjust” for age. By any measure, she is still small and behind, yet catching up. While Z’s cognitive ability and comprehension are outstanding, there is still great frustration when she is misunderstood. Her ability to communicate has vastly improved, yet many words still come out in a jumble in her mouth. Though she can now run and even climb, her core strength is still developing. She faces sensory and motor planning issues that render unfamiliar situations challenging, to say the least. Feeding has been a challenge since day one, though she is eating more and more. Sometimes. Everything just involves a bit more effort.

A friend referred us to a regional center, through which we were eligible — based on the extent of Z’s delays — for services through the federally-funded Early Start program. Thankfully, these services are at NO cost to us. For about the past five months, Z has had three appointments a week, including an hour each of speech and occupational therapy, where I’m also offered tools and tips to help her. Z attends a small play group in a preschool setting for an hour with the most amazing special-ed teacher (for 35 years), wonderful aides, and other kids with similar delays and more severe conditions. The kid to teacher ratio is often 1:3, plus parental involvement. There they encourage kids to communicate and socialize, exercise fine and gross motor skills, and enjoy music and snack time. Plus she sees a physical therapist monthly to check strength and progress.

Z has an unbelievable team of women working with her. Seriously, to work with pre-verbal babies and toddlers with limited language skills and achieve the progress they do, well they are just phenomenally skilled. They incorporate play to engage her. They help set expectations and boundaries. They help Z find her words and navigate through instability and uncertainty. These wonderful women are some of the only other adults to which Z has truly bonded. In effect, they are laying a foundation to help Z to achieve independence in the world.

Z is eligible for services through this program until age three. After that services may be offered through the state Department of Education, yet the school district is unlikely to approve more than limited speech therapy after age three except for kids with greatest need. At age 2.5 (next spring), Z’s team will begin to determine whether she should be eligible for services through the school district after age 3, and if so prepare an IESP (individual educational service plan) to guide the provision of services until no longer needed.

Are you still reading this? I know. It’s not really what I expected either. I figured she’d just catch up in her own time, that she was just shy, slow to warm, a picky eater, a mama’s girl. But it’s far more than that.

It’s amazing how much you can learn in a few months, how quickly we can become advocates when we’re mere students ourselves.

In truth, I am beyond grateful for these services. At the same time, this schedule complicates important things such as child care, preschool, work and travel. The therapies should better prepare her for a school setting when she’s ready to transition, or when I return to work more than a few hours a month. But the truth is, I can’t even consider taking on more work right now. I need to be the one to hear the therapist reports at each hour’s end. I need to participate to learn the tools and tips to aid Z’s development. I want to share her little victories. For better or worse, the services will end. So this is not forever. For now we’re lucky to have the benefit of early intervention to give Z the tools she’ll need to adapt. Everything else is temporary.

Already her progress gives us hope. Yet the road ahead is still long.

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~ by luna on October 30, 2013.

7 Responses to “still adjusting”

  1. Thank you for updating! Glad Z is getting the therapy she needs and the good progress she is making. I know the copays and deductibles are crazy! Thank you for still keeping your blog ! =)

  2. Great update (and, yes, I read the whole thing with interest). I’m glad your regional center has been of great help and I know that she will continue to make great strides in the coming year.

    Keep at it, mama, daunting as it sometimes is.

  3. It’s great to hear about Z and another mama that is navigating early intervention. I’m glad they’re helping and hope things continue to improve for her!

  4. What a good mama you are for being so on top of this, for advocating so well for Z, for getting her to the places she needs to be and for taking all the extra steps needed to get nutrition to her in acceptable forms.

    I can now say first hand that Z is a sweetheart. Just like her mama and sister. Give her a smooch for me!

  5. You must be tired, huh? I wish I could you send all you guys on vacation. You’re doing an amazing job, just so you know and Z is progressing and will continue to do so. My sister used to do early intervention in Georgia and her son also has verbal apraxia. Keep in mind that you may be able to get help from students at your local university if you run out of options at some point, like my sister did. It takes a village….here’s wishing our village was a little closer to yours….

  6. Oh, that is a lot to process and work through!

  7. Luna – I truly get what you are going through. Please feel free to email me if you want any information on what yahoogroups to join, IFSP->IEP transition, eligibility for services etc. My email should be available from my comment. I have walked in your shoes from 2009 to present with my older one. I’m really glad that cognitively she is doing well.

    Like you I have also closely observed early intervention in a holistic setting via a center based program. I hope you take some time for yourself to avoid caregiver burnout. I’m trying to do the same these days.

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