Finding the Right Specialist for Your Child

Parents of outside-the-box children may go through seasons when we need extra specialized support to help our kids thrive. This could be for evaluation and identification of needs and strengths, parenting consultation, or intervention. Potential services may include OT/PT, speech therapy, mental health support, sleep support, tutoring, myofascial therapy, dyslexia tutoring, vision therapy, medication management, nutrition guidance and more. It may feel daunting and overwhelming to select your child’s care team members, especially if a full evaluation results in a long task list of recommended interventions. The new information is helpful, but there are so many things! What to do first? Should the parent tackle everything at once? Is that even physically and financially possible?

No, it is not usually feasible or recommended to tackle everything at once. Take it from someone who tried that route. And, it’s ok to consider the well-being of the entire family and your financial situation as you plan a path forward. It needs to be sustainable.

While we may feel urgency to tackle everything now that there is some kind of to-do list, your child only has so much bandwidth for therapy. And, you have a limited bandwidth and energy level as well. A good rule of thumb is to devote twice as much time to your child’s strengths and interests as you do to their areas of deficit and need.  The idea is that engagement in your child’s areas of strength and passion is where they thrive. Look for that flash of excitement in their eyes and prioritize those activities. This is where their creativity and motivation will soar. Their areas of strength also bolster their self-esteem. Think of Maslow’s Hierarchy of Needs, or psychologist Dr. Scott Barry Kaufman’s recent perspective on the hierarchy of needs: a child needs to feel safe, loved and secure in order to make their best strides in other areas of growth. Your time invested in their general well-being and interests lays that groundwork of confidence, calm, internal safety, joy and satisfaction. On top of that foundation, the child will then be able to do the hard work of therapy and intervention.

When it comes to what intervention to pursue first, ask the psychologist or evaluator for suggestions. I recommend you create a triage: If there are high-urgency items, they get attention first. Then, reach for the low-hanging fruit: what intervention is inexpensive, local, or easy for your child to start? A heads up, sometimes there is a beneficial order of intervention. For instance, if your child need both OT and vision therapy, ask if you should do OT, first. In our specific situation, the specialists advised us to pursue IT first, as the core strengthening would help support the vision therapy later. When an intervention is completed or lessened, you can consider adding the next one on your list. If you attempt to do too many interventions at once, the result is less likely to be a happy kid and more likely to move towards burnout. I’m just a parent on the sidelines, though. I’ve never met your kid. Take into account what the specialists suggest and why. An example for us of triage was that when my son started myofascial therapy, we took a break during that season from speech therapy. Both interventions together would have been too hard and overwhelming. Now, he’s graduated from myofascial and is back in speech therapy again. 

After a diagnosis of any kind, you could receive a list of specific specialists the evaluator recommends. Early on, I made the mistake of following those recommendations to a “T”, as though they were the singular option for my child. It is better to consider them a starting point. Rarely is there truly only one option for a certain therapy. I’m not saying you don’t trust the evaluator, but the evaluator may not be aware that the specialist has tripled their price. Perhaps they changed insurance programs, or recently began delegating all of the intervention work to trainees, or whatever else may have developed over the years. Also, the evaluator will not be attending the therapy appointments with you to see the interaction between the therapist and your child. You are the expert on your child and it is a good idea to always hold space and respect for your own intuition and opinion about any specialist. What I have found over time is that when I feel a little uneasy about a therapist, my gut is right. I don’t mean that the therapist is a fraud or inappropriate. I just mean that once I eventually switched our child to a different provider, we found a specialist who was a better fit. My “mom gut” was on point, but I was ignoring it. I’ll add too- while my family prefers in-person therapy, there has been a time when the in-person specialist was difficult to work with. We tried an online specialist and it was super, checking loads of “right-fit” boxes on the list below, for our needs. That was a successful work-around when we felt stuck due to a poor fit with the local option. Take a look at the lists I’ve comprised, if that is helpful to you. They are a combination of our family’s specific experiences plus advice over the years from our trusted specialists.

Signs that you’ve found the right-fit specialist:

• They are affirming to you and your child.
• They believe what you say. They believe your child. 
• They build a rapport with your child. 
• They are strengths-based.
• They are kind.
• They listen to you and your child.
• Their guidance is beneficial and honest, not soul-crushing with negativity.
• They are flexible and try to adjust for your child’s benefit.
• You have a sense that the intervention is working over time.
• They give you updates such as check-ins and data-driven progress updates.
• They give you and your child tools while at the same time, they honor and affirm your child’s unique and creative individuality. 
• They are willing to discuss when an end-date might be, rather than therapy going on “forever” with no end in sight.
• They allow you to pay as you go, rather than locking you in to pay a large sum up-front that will cover many months of future intervention.
• Your child may struggle with the hard work of difficult things. At times this could mean tears, frustration or therapy days that don’t go as you had hoped. However, your child continues to feel comfortable and safe with the specialist.

Possible signs you may have a wrong-fit specialist:

• You or your child feel criticized.
• There is no time devoted to putting your child at ease.
• They won’t allow you to sit in on intervention sessions. (there are exceptions: Pandemic protocols, for example. With some evaluations the parent should not be in the room so as to maintain accurate results, but could be in the waiting room. Also, mental health therapy is often therapist and child for some sessions, but a good therapist will listen to your concerns and work with you. You are the expert on your child. Expect the level of communication to be very high, and you should be invited to some sessions.)
• You overhear the therapist criticize you or any of your family’s allies to the child.
• The specialist focuses solely on deficits.
• You feel uncomfortable with how they treat you or your child.
• You don’t feel heard. You feel dismissed. 
• They make you feel like a bad parent or they make your kid feel like they are bad.
• They have shaming responses to unexpected or challenging behavior. Ex: “How dare you!!”
• They have rigid protocols and expect all of the flexing to be from you and your child.
• They get in your child’s face and show frustration. They talk down to your child.
• ABA: they are teaching that neurotypical traits are good, neurodiverse traits are bad. 
• Over time, you continue to not see any real progress; especially if they can’t give you concrete data.
• They don’t offer check-ins, goals or progress updates. Their answers around this are vague.
• They refuse to discuss when there might be a possible end date. 
• They want you to commit and pay for a great deal of therapy and intervention up front. 
• They claim they can “cure” or eradicate dyslexia, ADHD, autism, etc with their special, proven steps, exclusive medications or vitamins. Lots of concerns here: We need the right support. It is not wrong or broken to be neurodiverse. (For example, don’t “cure” my dyslexia; it’s a super power! Just please teach me to read.) Also, when a program says they are the only way and their secret system will work better than any other: that smell you’re smelling as I say those words is the scent of “snake oil.” They are preying on your desperation to help your child. The reputable programs collaborate with each other and respect each other. And they don’t ask for a gazillion dollars up front. The good programs are not secretive about how it works; they are forthcoming with the plan.

For finding specialists, after the starting point of that evaluator or trusted psychologist’s recommendations, you may still need to find options. Consider asking around in your neurodiversity community. Ask your pediatrician. Ask another specialist- perhaps your SLP has many clients who have been happy working with a specific OT. Often one amazing specialist will be aware of other great specialists. Inquire on local or regional facebook groups. Look and see who is in-network with your insurance. (Though, frankly, I tend to find that many of our family’s preferred specialists are out-of-network. I submit for out-of-network reimbursement.) For dyslexia, one resource is Orton Academy; on the Parents page, you can request a listing of local and online certified OG tutors. For vision therapy and evaluation, find reputable practitioners through www.covd.org or the facebook group, Vision Therapy Parents Unite. Just be aware that on the FB group, some Vision therapy supporters may unwittingly suggest your child’s dyslexia isn’t real in their zeal for vision treatment. (Likewise, sometimes dyslexia facebook group members will deny the existence of visual processing deficits.) Look past the well-intended noise and hold onto any valuable advice they offer around reputable providers. They are all sharing their personal and important experiences; it just doesn’t diminish your child’s diagnosis.

When you start with a therapist, if it doesn’t feel right, don’t stay forever. Give yourself permission to make a change, if needed. Also, families don’t necessarily all complete every recommended intervention. Just because it is on paper does not mean you have to do it. If a great psychologist is on your team, they could help you decide which interventions may not be necessary or could be shelved for the future.  It helps once you find one wonderful and reliable specialist; slowly build from there. You will begin to recognize when someone is not a team player, and recognize when you’ve found a great support for your child. Give yourself grace if you stay with a poor-fit therapy too long. We are all just doing our best. 

You’ve got this!

Christina