Hand to Hold's Official Blog: Written by Parents for Parents

Moving With Your Special Needs Child

As a military family, we are likely to be transferred every three to four years. Having a child with significant special needs can make this a daunting task. Since our seven year-old son was born we have moved only twice, but have learned many important lessons. Our first move was within the same state, but the second was another state and across the country (California to Massachusetts). We made numerous mistakes and learned lessons that will help us navigate our moves more efficiently in the future.

Top Tips When Preparing To Move

  1. Visit education/school possibilities before you decide where to move. I cannot express how important this step is to getting the best for your child. This goes beyond making phone calls; visiting school sites is very important. Of course, by law all districts have to provide for all students in their area, but making sure you have a good program is paramount. The first time we moved I did not complete this step and my son had to travel 45 minutes each way to preschool. Sure, he could have attended our local school, but they would have had to create a special program just for him. As an educator myself, I knew this was not an ideal situation and decided to send him to an established program, with a good reputation. Also, consider looking at private, special needs schools that are in your area. Once you have decided on a school/program, find out the rules about your child attending that school- often you have to live in the attendance area of the school, but sometimes there are waivers or other “school choice” programs.
  2. Secure a local address ASAP. Once you have a local address you can apply for state services and other resources. Call and get these forms before you move and try to send them back as soon as possible. It can take many months for your child to be approved for state insurance or other state services. We have been in our new location for a year and are just now able to access some resources because of the time it takes to process the paperwork.
  3. Find a pediatrician for your child before you arrive and get an appointment within the first month you are there. You need to start the referral process so you can have access to specialists in a timely manner. Even planning this far ahead, we couldn’t see some specialists for over 6 months. Get copies of your medical records and hand carry them to the new doctor’s office. Many places will not even schedule a first appointment unless they have medical records first.
  4. Use Social Media! Look for mom’s groups, special needs groups in your area, etc. I was able to access a local mom’s group before I arrived and asked lots of questions about the best doctors, babysitters, therapists, places to shop, etc. I always get the best ideas and suggestions from other parents. You may even make a new friend or two!
  5. Get a referral to another special needs parent. Some states have actual programs that can match parents to talk about a variety of common issues. This was very helpful to me when moving to Massachusetts. Another suggestion is to contact your child’s soon to be teacher (if you can find out that info) and ask if there are any other kids in the class with resourceful parents who may be willing to talk with you about local resources. This has been INVALUABLE to me!
  6. My "To Do" list at the beginning of the week

    My “To Do” list at the beginning of the week

    End of the week list

    End of the week list

    Keep track of phone calls and people you are waiting to hear from. This step was my downfall and I spent a lot of time following up. Do not assume that when you submit paperwork or call to make a request, that everything will be processed smoothly. We have had lost paperwork and individuals who were not able to follow-through numerous times. Below is my weekly “to do” list. It morphs and changes throughout the week, and becomes a bit cluttered and disorganized, but it works for me. The next week I start with a clean sheet! I find it helpful to break my list into categories (i.e. to-do, waiting, projects, paperwork).

  7. Accept long hold times. Waiting on hold and being transferred to numerous people can conjure emotions similar to road rage! Some agencies are either not efficient or have not enough people to finish jobs in a timely manner. I have waited on hold for over 45 minutes numerous times. Just set aside time to wait, put the phone on speaker and wash the dishes or fold the laundry until someone answers.
  8. Look forward to your move. While all of the paper work and hassle of moving can be overwhelming, the experience of starting over and reinventing yourself and family can be quite liberating. Take it all one day at a time and expect that there will be days of frustration!
Stephanie Goley About Stephanie Goley

Stephanie Goley (MA) is the mother of three, full-time stay-at-home mom, part-time educator and military spouse. Her oldest child, Kai (6) was born full-term, but experienced birth trauma causing significant brain damage. He spent 17 days in the NICU and is diagnosed with cerebral palsy, dystonia, cortical visual impairment and seizure disorder. He is non-verbal and non-ambulatory, relying on others for all his basic needs. Stephanie is interested in fitness and having fun adventures with her family. She is passionate about creating the best life possible for her son and seeking out alternative therapies to help develop his potential. You can find her on Facebook and her personal blog about Kai, written from his perspective.

Comments

  1. Wow! Thank you! This is the best discussion I’ve ever seen on this topic. It’s especially important to find out what services each state provides (like Medicaid waiver programs), how far you might have to travel for services (you might not have a lot of provider choices) and how much they’ll cost (it’s shocking how much it can vary from place).

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