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Special Needs Evaluations: Why Parents Hesitate

Things I no longer say: "Look me in the eyes when I'm talking to you."

We have a long and storied history with Early Intervention. Our twins were premature, so at the first inkling that we were having some feeding problems, our pediatrician recommended we contact our county’s Early Intervention department.

As much as I wanted to help my babies grow, develop, and thrive, I’ll admit I experienced a twinge of hesitation. And I’m not the only parent who has felt that way. There are a whole host of reasons why parents may hesitate to reach out to early intervention, or other resources, to have their child evaluated.

Here are some of those reasons–and why I think parents shouldn’t hesitate to have a child evaluated if their gut says something’s going on. (Or even if your gut isn’t telling you a thing, but your pediatrician or a teacher is.)

Reason: “I’m from the government and I’m here to help your take your child.”
Reality: The people from Early Intervention are not going to take your child. They won’t even judge you if you haven’t done the dishes, you’re wearing the same yoga pants you slept in, and you have baby food in your hair. Not, um, that that’s how I looked or anything.

Reason: “I’ll have to clean my house.”
Reality: Early intervention evaluations and therapies are usually done at the child’s home. However, you can ask for evaluations and therapies to be done at their location if you’re really freaked out about having people over. But seriously, no matter what kind of crazy mess you have in your house, I bet they’ve seen worse (because they’ve been to my house). Plus, the therapists don’t care. They just want to help you help your kids.

Reason: “My husband/wife/mother/mother-in-law/sister/friend/neighbor thinks it’s a bad idea to ‘label’ my kid.”
Reality: If your child had diabetes, would you worry about the label of “diabetic”? Probably not. The evaluation process isn’t so much about finding out what’s “wrong” as it is about finding better ways to teach your child. As for labels, I’ve decided I’d rather let teachers think (correctly) that my daughter has ADHD and autism than let them think (incorrectly) that she’s undisciplined and rude.

Reason: “English is not my primary language.”
Reality: I’ve been to my county’s early intervention office, and they had signs up in like 40 different languages. Ask a friend or someone in your pediatrician’s office to call for you if you’re uncomfortable.

Reason: “I don’t have time.”
Reality: They will schedule around your workload. If your child is in daycare or preschool, they’ll come there. If your child is already in school, the evaluation is done there anyway. Our son’s diagnosis actually ended up saving me time because I’m no longer spending hours banging my head against a wall trying to teach him the wrong way.

Reason: “My child’s teacher says she just needs to buckle down and pay attention.”
Reality: If you feel that your child may have something else going on — such as a learning difference like dyslexia, or an inability to regulate attention, you owe it to your child to look into it. Teachers cannot make a diagnosis (although they can recommend an evaluation). Speak with your school’s social worker or counselor and explain your concerns.

Reason: “Maybe my kid will just outgrow this.”
Reality: Maybe. But if it’s the kind of thing your child will probably outgrow, the evaluation will say so. If it’s the kind of thing where your child could clearly benefit from some help along the way, the evaluation will say that. And believe me, if your kid outgrows whatever it is, they’ll let you know it’s time to stop services.

Reason: “My kid is passing and doesn’t get into trouble at school, so there can’t be anything really wrong.”
Reality: That doesn’t mean your child isn’t struggling. Before her ADHD diagnosis, my daughter was getting good grades. But she was crying over her homework every. single. night. She couldn’t remember what had happened in math, and I’d have to re-teach it every. single. night. We’d both end up upset and frustrated. Now, with both medication and better organizational skills, she gets her homework done on her own, every night. She went from having 90′s in math (and crying), to 98′s, without tears. She’s now doing math two full grades ahead. I’m not kidding. So, sure, she was doing well. But her ADHD was holding her back from doing her best. And more importantly, she’s no longer miserable in school and during homework.

Reason: “An evaluation means I have to admit that something is wrong.”
Reality: Nah. You just have to admit that you’re the kind of loving parent who wants to make sure you’re doing everything you can to help your child. Identifying issues early on makes it so much easier to help your child. However, it’s never too late. You can have your child evaluated through your public school district all the way through high school.

Reason: “I have to admit that something is wrong that I, as this child’s parent, can’t fix on my own.”
Reality: Well, yeah, kind of. I mean, even if you are a professional, licensed speech therapist, occupational therapist, physical therapist and teacher all rolled into one, it’s probably not a good idea to provide all of those services to your own child. Assuming you’re not all those things, it’s okay. It’s not your job to solve all your child’s issues yourself. It’s your job to access the resources to help your child.

Reason: “I’m afraid my whole life will change if they find something wrong. I’m already stressed to the max. I can’t handle any more.”
Reality: The vast majority of children who need early intervention or in-school services don’t have something like autism. They’re more likely to have a speech delay, or a fine motor delay. Important stuff, but not life-changing. That being said, finding out about our son’s autism was the best thing that ever happened to our family. Parenting became easier because we finally understood how his mind worked, and how better to teach him and communicate with him. In turn, our son became less stressed because I stopped saying stupid things like “look me in the eye when I’m talking to you.”

For me, the initial concern in making that first call was some combination of those fears. Okay, not the language one, but definitely the cleaning-my-house and I-have-to-get-out-of-these-yoga-pants ones. Regardless, I put on my big-girl panties and made the call. A coordinator from my county arranged for a team of therapists to come out to my house and evaluate the girls. Um, yeah. They come to your house. You don’t even have to go anywhere. It’s kind of amazing.

Ultimately, all four of my kids ended up needing some sort of Early Intervention services. Two of them still receive therapies through school, but it’s clear that their issues would be far more severe if it hadn’t been for Early Intervention. The people we dealt with from Early Intervention were invariably thoughtful, caring professionals who loved working with kids.

Okay, I’m convinced. Now what do I do?

Under the Individuals with Disabilities Education Act (IDEA), all children with disabilities are entitled to a free and appropriate public education. IDEA includes children who haven’t started school yet, grouping them into “birth to age 2” and “ages 3 to 21.” Within the age 3 to 21 range, the federal government provides additional grants to provide special education services to preschool children with disabilities. IDEA is a federal law, but is managed by a “lead agency” in each state. It may be administrated on a county level, or by your school district, or by an “intermediate unit.”

  • To request an evaluation for a child age birth to two, find your nearest Early Intervention Office by asking your pediatrician or Googling “early intervention” and the name of your county and state. You do not need a referral to request an evaluation.
  • To request an evaluation for a preschool-aged child, call your local school district’s administrative office and ask for the person in charge of special education services. Explain that your preschool child needs an evaluation. They’ll either be the right person to talk with, or they’ll give you the number for the right person.
  • To request an evaluation for a school-aged child, submit a letter in writing requesting that your child receive a full educational evaluation. Under the Child Find mandate of the IDEA, schools are required to evaluate a child suspected of having a disability, even if that child is receiving passing grades and progressing from grade to grade. The school should then issue a “Permission to Evaluate” form for you to sign. Once the PTE is signed, the school has a specified number of days in which they must complete the evaluation and provide a written report. (This number of days varies by state, as does whether it’s “calendar days” or “school days.”)

Helpful Links:

  • Individuals with Disabilities in Education Act: IDEA.ed.gov
  • Wrightslaw (free information about IDEA and special education law)

(Photo Credit: iStockphoto)

Related Autism Awareness Month Posts:

How the Media Influences How We Look at Autism

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Hollywood Loves It Some Autism (Sort of)

But S/he Doesn’t Look Autistic (Video)

You can read more from Joslyn at her blog, stark. raving. mad. mommy. You can also follow her on Facebook and on Twitter.

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