A New Journey
Blog May 2019
Newly Diagnosed? What’s next?
There is no instruction manual given when your child is diagnosed with an exceptional need. While disorders such as Autism, Oppositional Defiant Disorder, Prader-Willi Syndrome, and Down Syndrome have resourceful communities with an extensive amount of information, each child is unique and their personal journey will look like no one else’s. Your child is amazing and should be embraced for their uniqueness, but this new diagnosis can bring forth emotions of frustration or even fear. You may be asking yourself hundreds of questions and waiting weeks, or even months, to see a specialist only to end up having more questions than before. Thankfully, there are people all around you to help. The information is out there and your support network can provide that extra guidance for both you and your family. You are at the very beginning of a new journey with endless possibilities, so let’s answer that burning first question: What’s next?
Step 1: Start your support network
“It takes a village” is a proverb that may ring truer than it has before. Though you may have already turned to family members and friends, look into other support groups online and in your community. Your family and friends are invaluable for emotional support, providing a shoulder to cry on or an ear to listen; however, they may not have the best knowledge for resources specific to your family’s needs. Facebook is a great way to connect with others who have been in your shoes. Often, these groups of moms, dads, and other caregivers have encountered similar situations that you are currently going through and can advise with personal suggestions and guidance. This extra community can give you additional knowledge about which therapy providers worked best for them or how to fight for accommodations in school. They sometimes even meet in-person to socialize and share resources, adding another valuable member to your emotional support team. If you are local to Brevard, one such group is SOAK (Supporting Our ASD Kids). Visit their website to learn more: https://www.soakautism.com/. Groups such as SOAK provide a safe space for recommendations, advice, and to share difficulties as well as successes. Once you have a great support network, some of that initial confusion and frustration will be eased.
Step 2: Seek Professional Assistance
When you received the initial diagnosis for your child, your doctor may have made referrals for your child to attend Speech, Occupational, Physical Therapy, and/or ABA Therapy. Thankfully your support network can help you by making some suggestions of providers they have used. Your online support group and/or doctor may have a list of local providers easily accessible to you and can also explain what each therapy addresses. You can also find resource pages by using your search engine. Keep in mind any reviews you’ve read or information you’ve heard from your support network but always remember that a provider may not be the best fit for every individual. When touring clinics or reviewing websites, remember that you know your child and their needs best.
Step 3: Start Services
Even once you find local providers, you may find that many centers have wait lists. Each therapeutic service requires specialized training and it can hurt the quality of services to take on more clients than their staff can handle. This wait may also include time that it takes to receive authorization from financial sources if you are using your child’s insurance to assist with funding. Waiting on a provider to schedule the initial assessment meeting may be tedious, but once started you will have a whole new level of support and your child can begin growing. For ABA, the typical process of starting services looks like this:
An ABA therapy provider will work with you and your child to break down target areas and write a detailed plan of reaching these goals. Keep in mind that therapy looks different for each child and while sometimes progress can be fast, progress can also be slow. Communicate regularly with your providers if you have any concerns about your child’s progress. The start of a new therapy may be difficult as your child may be working hard during their sessions. Don’t forget your support network when you feel overwhelmed as your family adjusts to their new routine.
Step 4: Become Your Child’s Expert
Your therapist will never understand your child the way you do. Even though each therapist has received training and has a specialized knowledge that will assist your child in unlocking endless possibilities, but you are the one who tucks them into bed each night. You are the one who juggles a tantrum in the middle of Publix while taking care of a younger sibling and still manages to get the only type of cereal your child will eat. Even if your therapist spends 20+ hours a week with your child providing 1:1 services, they will never be you.
That is why caregiver training is so important. This time is for the provider to answer your questions and teach you ways to incorporate new strategies into everyday life. This doesn’t mean you have to sit at a table with your child for hours each day to go over picture cards with them. Simple changes to your routine will allow your child to continuously learn and maintain the progress they have gained with therapists. Your continued work with them will make these gains even more functional for your family and you will achieve more than any therapist possibly could!
Step 5: Take Care of You!!
This step is by far the most important step. You can’t pour from an empty cup, so one of the best things you can do for your child is to make sure that you are taken care of. Your days will be busy, and some days you may be lucky to experience the luxury of even 30 minutes of alone time, but it is vital that you find a way to take care of yourself. Remember your support network! This may be a perfect time for family or friends to babysit or to check the online support group for a recommended respite care provider. Try to take a break (even if just for an hour) once a month to do something just for you. Get your nails done, go for a run, or sit at the beach by yourself. On the days your child is in a therapy session, use the session time to read for 30 minutes or listen to some music that isn’t from Disney. Consider seeking out your own professional services, as well. There are many great counselors who can assist you through this transition. Your child’s new routine is something that will become a natural part of the day and you will eventually find a way to incorporate self-care into your day as well.
These steps should guide you as you start your new journey with your child. As you complete the initial steps, you will gain experience and knowledge to share with future parents who are in the same position you are now. Though it may not be a detailed road map, you have a great starting point. Please feel free to e-mail firstname.lastname@example.org or call (321) 305-5576 if you would like any more information on any of the above steps.
If you enjoy reading, check out the below link for list of books recommended by other parents with children diagnosed with exceptional needs.