Family Calculus - Moving Across the Country with Neurodivergent Children

The calculus for families with neurodivergent children is often different from their peers. What do I mean by calculus? The planning, preparation, and decision-making involved in joining in a community event, attending a birthday party, or signing up for a new enrichment activity is often more involved and complex than for other families. And those are the “little decisions.”

Big Life Changes: Moving and Rebuilding Support

What about the decision to change jobs or move to a new city or state? Will my new health insurance cover our existing providers and therapists? How do I find a whole new team: pediatrician, dentist, developmental pediatrician, neurologist, psychiatrist, psychologist(s) - therapists and evaluators, OT, SLP, PT, vision therapist… What about schools? Writing a new IEP? How do I find an Orton-Gillingham certified tutor?

They love their ___: music teacher, martial arts, swim teacher. It took me soooo long to find the right instructor who really connected with my kid and understood their strengths and challenges.

Rebuilding this team of support for your child and for yourself will take time. Quilt is perfectly positioned to assist you with all the tasks that come with these major life transitions outside of your home.

Maintaining Order Amidst Chaos

We are also intimately familiar with the upheaval inside your home. Do you ever feel like your only means of survival is to put systems in place and let “regularly scheduled programming” run on autopilot so that you are “free” to juggle all the other one-off meetings, appointments, special events, holidays, schedule changes, half-days of school, and any other balls that may have dropped?

For my own family, I need to be able to count on a few things: Regular groceries, snacks, safe foods in their usual places in the cupboard, pantry or refrigerator. Kids' clothes, toys, school supplies, and/or diaper bag in their usual places, etc. I still can never find my phone or keys, but if the other things are in their place, we have a fighting chance to make it to school on time.

Supporting Your Child Through the Move

I realized when my kids were very young and we traveled anywhere, my stress skyrocketed. I couldn’t run anything on autopilot. I didn’t want to bring “everything and the kitchen sink” to visit grandma or stay in a hotel. But without all my go-to items in their usual places, I had to think about every detail just to get through the day and meet the needs of my young children. And that’s just travel. It’s temporary.

If you’re moving, every system and schedule needs to be recreated. You’re likely shopping at a new grocery store and everything is in a different place. Add at least 30 minutes to your shopping routine for a while. And what about your kids' favorite store brand of mac and cheese or yogurt or anything? You may no longer have access if you are now shopping at an entirely different grocery chain. For some families with discerning eaters, this alone can spell trouble.

These are just some of the details and mental load that you may be carrying. Your child likely will also be experiencing big emotions related to the move, the disruption of their routine, and the upheaval of their usual environment. They need you for co-regulation and reassurance now more than ever.

Even if you’re only moving one town over or to a new home in the same town, typically the following needs to happen. First, you need to build in more time to help your kid readjust and go through the emotional transition, rebuild routines, structure, and familiarity that will help support them. Second, as the caregiver, you likely have created many routines and structures that were keeping the household sane. These will all need to be re-built. Next, you should plan to provide an additional level of emotional regulation for your kids. Their lives and environments are “out of whack.” They need your calm, your confidence, and your reassurance that it will all be alright.

Taking Care of Yourself During Major Transitions

Finally, and perhaps most importantly, you need to build in the right amount of time for you. With all of these extra demands, you cannot sacrifice your basic needs or ignore your likely strained mental health and stress levels. One simple trick is to complete your own body scan each time you move to a new room or walk through a doorway. Are you thirsty? When was the last time you sipped some water? Are you hungry? Are you feeling sluggish or exhausted? Or are you manic, shaky, or feeling “on edge”? For either energy state, you could try the following: Go outside. Have you seen the sun today, breathed some fresh air, touched grass? Or do you need 5 or 10 minutes in a dark room? Lay down flat and close your eyes for a mini-recharge.

Learning to Let Go

Our multiple moves forced me to ask for help, pay for some support, and outsource things that I usually want full control over. But for our family at the time, I was forced to surrender some control for the sake of survival. I had to keep myself whole (food, sleep, a walk, and lots of deep breaths) in order to be physically and mentally available for my young kids who were “thrown for a loop.”

When we decided it was time to move back to the East Coast to be nearer to our family, we had a lot to think through. Fortunately, my husband was staying in the same job and our health insurance was staying the same. We were very lucky to already have a PPO and found that many providers in our new location were within the network. For many families, a change in health insurance is a HUGE barrier.

We were also very lucky to purchase a home from across the country. By the time we were in our new state, we had already completed closing on the house, which was the necessary first step in being able to register in our public school district. For many families, just registering in a public school district can be a challenge until you have a stable living situation (renting or buying).

Rebuilding a Support System

We were able to move forward with a referral to Special Services and convene a Child Study Team early in the summer. By the end of the summer, we were able to convene an IEP meeting and get our son ready to start school.

• Health insurance – Check.

• School – Check.

• The other 12 therapists and team members were slowly added over the next 3 years:

  • Developmental pediatrician

  • Dentist

  • Neuropsychologist

  • Pediatric psychiatrist

  • Therapist

  • Occupational Therapist

  • Tutor

  • Best music teacher ever!

  • Inclusive movement class

  • Coding classes

  • Educational Consultant

  • Special Education Attorney

    
    

On the heels of COVID, every developmental pediatrician in our area was completely booked more than a year in advance. Finally, I found a developmental pediatrician in New York City. This was a trek for us, but worth it just to have a provider on board.

There are no easy answers for a big move and very few shortcuts. But Quilt can help. We can build your action plan, help you prioritize next steps, and ensure that your own needs, as the caregiver, are not left off the list.