Become CEO of Your Child’s Care

When you became a “special needs parent,” you unwittingly took on a new (unpaid) position as head of personnel for your child’s myriad specialists. Take a crash course in management from an SN mom with lots of experience under her belt.

A friend of mine once called special needs parenthood “the toughest job I never asked for.” It sure feels that way. When I picked up the phone to call Early Intervention, my file was seemingly sent to special needs HR. Overnight, I was appointed lead research officer, chief filing clerk, senior producer, purchasing manager, accounts payable administrator, and head of personnel.

I was actually lucky. When I got promoted to CEO of My Child’s Case, Inc., I was working as a project manager supervising a small department. I spent my days rallying people to work together towards a common goal. I knew that in trying to schedule the impossible (the only time the OT can come is during the afternoon nap!), it was helpful to lay everything out in a spreadsheet. I knew how to hire and, when necessary, to fire. I was used to being a boss.

I have had many occasions to be grateful for all that training, because raising a child with special needs is a lot like being a lead project manager. I had no idea that I was secretly being groomed for another position, but when SN parenthood happened to me, those workplace skills came into play. If your own work history wasn’t as serendipitous, here are some helpful office tips that I have applied over and over in my second ‘career.’

  1. Fit matters; trust your gut.
    If a child protests and cries during therapy, it’s not necessarily a bad sign: a good therapist is always pushing for progress in the areas of greatest challenge. But if a therapist can never make headway because your child screams the entire session, consider whether it’s a good match. Differing temperaments and styles mean that even a great therapist can be a poor fit for your child. I remember a highly recommended therapist with a sterling CV who was the only one of the bunch my child ran away from, not to, when the doorbell rang. It doesn’t matter how amazing someone is on paper if it turns out they’re not the right person for your child.
  2. Don’t second-guess yourself.
    If you do need to make a change, be confident and proceed. Women in the workplace often get the unspoken message to be “nice”—good girls who don’t rock the boat. The same pressures to be a “nice” SN mom can apply. Once, I was assigned a therapist and saw immediately that it wasn’t a good fit. I felt ridiculous going to my EI service coordinator to make a switch so soon, plus I didn’t like the thought of causing someone to look for a new job. But things didn’t get any better, so after fighting with myself for weeks, I finally raised the issue. The replacement therapist was such a dramatic improvement that I kicked myself for not speaking up sooner. If your gut is talking to you, don’t doubt yourself and don’t wait, because it’s your child who’s not getting what he or she needs.
  3. Speak up.
    You are representing your client’s interests. Managing requires you to have uncomfortable but unavoidable conversations. I once worked with an excellent therapist who started to slack off: late arrivals, sessions cancelled at the last minute. I hated the idea of a confrontation and kept putting it off. Eventually, I gathered my courage, and to my shock, rather than arguing, the therapist listened, apologized, and in fact went on to scold me for waiting so long to bring it up. Advocacy takes determination, but it’s worth it and it’s very empowering.
  4. This is business, not personal.
    It’s hard not to resent people who regard your child as a collection of deficits and never seem to have anything good to say. But even if therapists drive you crazy by relentlessly stressing the negative, what they want is just what you want: for your kid to grow and succeed. (All good therapists want to lose their jobs.) Feel free to remind them that you need to hear something positive once in a while, but try to think of these conversations as business discussions. No one is judging you or your child. The more matter-of-fact your discussions with the therapy team are, the more productive they will be. And the less they’ll hurt.
  5. Keep the lines of communication open.
    Let your therapists know what you’re seeing when they’re not with your child, what happened over the weekend, and what therapeutic carry-over you’re doing. Send emails or write entries in the communication notebook as often as possible. Take video of your child to show during the next session. The more information everyone on the team has, the more they can contribute. And the more you share, the more the therapists will share with you.
  6. Say “thank you.”
    Everyone likes to be appreciated. If you think your therapists have been doing amazing things with your child, tell them as often as possible! Even if it seems obvious, or that they’re just doing their jobs, take the time to single people out for praise. If you need a therapist to do something for you—write a justification for a new evaluation, help you advocate in a crucial meeting—the relationship you have built up will have a big impact on their desire to help you. And put it in writing: Take the time to write heartfelt, detailed notes that describe the differences they’ve made in your child’s life. Therapists have told me that they keep those notes for years.
  7. Network.
    You may feel like hiding away, because being out in the world means acknowledging that this is actually your real life now. But it is your life, and it’s so much more livable once you find your people. Join a support group. Make yourself approach friendly-looking parents at the therapy office or playground. Open up to them, and they will open up to you. Eventually, you will have a new crowd, a band of fellow SN parents. And these will be some of the deepest, most meaningful connections you ever make in your life. These friendships are a big bonus not listed in your benefits material. And they are one of the biggest compensations of the new job you didn’t want and can’t quit, but at which you will eventually find yourself, against all odds, succeeding. I promise.

Sarah Birnbaum lives in New York City with her husband and two children, one of whom has special needs. A former editorial web producer with an MFA in writing, she is now a special needs consultant and special education advisor. Learn more at