Clearly, there is absolutely no ONE way to navigate through life as a parent raising a child with a disability. Every single family will take a different path and even among similar diagnoses, there are just simply too many factors to make a one-size-fits-all, cookie-cutter, step-by-step guideline.
HOWEVER, in thinking about this process of ours thus far (3 years in), several general pointers have emerged that I believe are super important – even if they sound simple. You’d be surprised how quickly the simple things are forgotten in the midst of the new found life that comes with appointments and assessments.
1. GIVE YOURSELF TIME TO ADJUST
This is #1 for a good reason! Whether the diagnosis comes as a complete shock or it’s simply a confirmation of what you’ve already suspected, you’ll need time to process and adjust. You’ll grieve, you’ll feel overwhelmed, but eventually, like so many families that have already been down this road, you’ll come to the point of acceptance and learn to adjust to a new ‘normal’!
Researching will give you the opportunity to learn and prepare to become the advocate your child needs. Learning terminology and basic rights is important, BUT it takes time to absorb everything so give yourself some grace and time. You will come to find that repeating #1 is essential for survival! 🙂
PLEASE PLEASE PLEASE do not go on Wikipedia and avoid clicking Images on your browser for your own sanity – unless you want to stress yourself out! People are mean and uninformed, so avoid unnecessary information.
(I learned the hard way)
Find reputable sites, specifically organization and foundations that are diagnosis specific. They will be able to give you more accurate and up-to-date information.
3. ASK LOADS OF QUESTION
“What specialist do we need to see?” “Any additional genetic testing needed?” “What outside programs need to be contacted?” are just a few of the questions you may want to ask your child’s primary doctor or specialists. Some doctors will automatically begin the process of referring you to different specialists or programs, but if they don’t make sure to express your concerns.
I will be very honest in saying that although you’ll have many questions, many will go unanswered or you’ll get a generic, textbook response – especially if you want answers about the future. In cases of rare conditions or diagnosis, providers may be uniformed due to the lack of scientific research, which I know can be frustrating as a parent. No one can predict the future, so try to ask questions that are focused more on interventions and action plans.
Understand this: Regardless of the initial predictions doctor’s make regarding your child, take heart and know that many children have gone ABOVE and BEYOND whatever labels have originally been placed on them!
4. CHECK YOUR INSURANCE COVERAGE
Depending on your health coverage, meeting your child’s needs can be very costly such as paying out of pocket for surgeries, equipment, co-pays, ect. There are programs, grants and foundations that are available that can help with these costs. Look into information on eligible programs that may alleviate some financial burden. This includes Early Intervention, your local Regional Center, Supplemental Security Income (SSI), In-Home Supportive Services (IHSS), California Children Services (CCS), and others.
5. GET ORGANIZED
This is so important and I cannot stress it enough – you WILL need a binder and dividers to keep paperwork organized. (Again, I learned the hard way). You don’t need anything fancy, but for your child’s sake and your sanity, you’ll want to keep accurate records of all providers, last appointments and all other important information. Truth be told, if you do not organize paperwork and keep records, you put yourself at an unnecessary disadvantage by playing “he said, she said” with everyone! The more specialists/programs your child in involved with, the more this will be ESSENTIAL!
I also highly recommend creating a simple call log through Microsoft Word or just a plan journal to track all correspondences because things can get really confusing if you don’t. Trust me – things can get confusing and complicated when there are multiple agencies or doctors involved so you want to make sure you are able to keep everyone on your medical/therapy/insurance team accountable!
6. GET CONNECTED & NETWORK
I think that the importance of community shouldn’t be minimized or overlooked. In fact, getting connected and networking is a large part of my personal research because it’s where I find information about current events, local activities and ask other parents for advice. There’s nothing quite like being able to talk to someone who knows what you are going through (to some degree) and can give you practical help and direction. There are plenty of community groups that you can find through Facebook and plenty of lovely families you can follow through Instagram and blogs.
7. TAKE CARE OF YOURSELF
I previously wrote a post about respite and why it’s so important. This is often forgotten and I speak from experience. You must take care of yourself in order to really care for your family. You have to pour in so you can pour out. It doesn’t need to be elaborate, but it needs to be a priority!
8. KNOW THAT YOU AREN’T ALONE
When life is uncertain, it’s easy to feel alone and disconnected. Let me be a LOUD reminder that you are not alone! Many have walked, are walking and will walk this road, so there is lots of love and understanding to give and share!