Getting a medical diagnosis for your child is the first step to helping your child reach their potential in life. If you don’t have a diagnosis, you don’t have a plan. And if you don’t have a plan, you are inadvertently choosing the “wait and see” decision.
The “wait and see” decision is something the school district loves to use as a delay tactic. Why not? If a parent is willing to “wait and see” the district has no obligation to address a diagnosis that requires support and services.
A diagnosis gives you a baseline, a starting point, a foundation to build upon. Yes, it’s a label, but without labels, you can’t get the IEP you need for your child. That’s just how the educational system works. A label is just that, the key to developing the IEP but it does not define your child. Your child is so much more than a label.
Your child has boundless potential that may never be realized unless you start at step one, getting a diagnosis.
This is not an easy road, but I want to encourage you that it is a worthwhile one. My daughter’s evaluation and eventual diagnosis set me on the advocacy path, not only for Chanel’s IEP but for scores of other children as well.
Like so many things in motherhood and in life, there are some things that we must face that may rock us to the core. Getting a diagnosis for your child is one of those things.
We started out with an autism specialist, who referred us to a long list of specialists. It is common to have a specialist refer you to another specialist to evaluate in a different area. Between referrals and very long waiting lists, it can be a long road in ruling out all the potential areas of your child’s suspected disability.
Seeking an evaluation and possible diagnosis for my child was so much more difficult than I thought it would be. It was a process that took almost a year and then I was faced with getting the IEP Chanel needed. And that’s a whole other ball game.
I know many of you are considering an evaluation, or are currently in the evaluation process. I want to share a few things that will help you through the evaluation process so you will feel more confident as you deal with the onset of emotions that accompany getting a diagnosis.
1. DON’T WAIT
Get referrals for the best doctors and get on the waiting list. Make your request in writing for an evaluation with your local school district. It doesn’t matter if you have a medical diagnosis before you request an educational evaluation. The IEP assessment process, which includes obtaining an Independent Educational Evaluation (IEE) can take close to a year or more. Waiting will not serve your child or your family.
2. DO YOUR RESEARCH
As you wait for the medical and educational evaluations, use this time to become an expert on your child. Take notes about behaviors, triggers, and delays you observe. This will help you answer the doctor’s questions and fill out the parent rating scales without feeling pressured and put on the spot.
Start doing your research. Read everything you can get your hands on to learn the terminology associated with your child’s suspected disability. There are many different neurological disorders such as Sensory Processing Disorder, Occupational Therapy, Vision Processing Disorder, Central Auditory Processing Disorder, (CAPD), and Developmental Delays.
3. DON’T EXPECT IMMEDIATE CHANGES
The reality is, you get the diagnosis, and then you go home and get to work on helping your child. The doctor will give you the next steps which may include a referral to another specialist. Getting a diagnosis, providing your child therapy, and obtaining the right IEP will not “fix” your child. But all of these things will help your child to be the best they can be. Remember, a diagnosis is simply information to help you understand your child and begin to piece together a plan to get your child the help they need.
4. YOU ARE NOT ALONE
Waiting for a medical diagnosis and educational evaluations can feel like an eternity. It is scary and can be isolating. Reach out to other moms and make new friends. There are so many Facebook groups full of other parents just like you. Find a support group, in person or online. Feeling alone and isolated will only put more emotional stress on you. Becoming overwhelmed and fearing a diagnosis can be paralyzing. Now’s the time to spark your “momma bear” inside and get to work to help your child. Please don’t try to do this alone.
In closing, I want to caution you not to believe any professional that places a disparaging prognosis on your child. No one knows what the future holds or has a right to play God and predict a child’s potential. If your goal is to get your child the help they need to thrive, you are on the right track.
I can tell you this, over the past 24 years I’ve seen my clients start out as little ones, hiding under tables and disrupting the class, and end up functioning very well at school and eventually graduate high school with a diploma. As a parent of a newly diagnosed child, we don’t know what the future holds but I’ve seen kids make miraculous progress when they get the help they need, (including my own daughter, Chanel).
If you haven’t joined our Private Special Education Parent Empowerment Facebook Group yet, you should check it out here.
Here’s to your advocacy success!
Valerie Aprahamian
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