Help, most everyone wants to help their children if/when they need it. So many families including my own have spent thousands of dollars trying to find answers to what is happening with their children. If you live in America, you shouldn’t have to invest that much. But when your baby is not thriving, no one is there to spell out the way many of us have been thrown into the pit of co-pay after co-pay, and suddenly, we find ourselves just very in debt. For me, personally, I also didn’t have that many valid, concrete answers. Many parents, including myself, is willing to determine answers no matter the cost. Here is what I’ve learned that can save families so much money. It is an easier, less chaotic way too.
If a child is younger than school aged, email the county of residence’s Health Nurse. The nurse’s email is normally on the county’s Board of Health website. Ask for diagnostic testing for your child. She/he will either meet with you or ask you a ton of questions over the phone to determine eligibility. In Ohio, budgets have been cut. The amount allotted no longer completely covers a full developmental assessment. But it does cover a good bit of it.
From what I have experienced with three children at our local pediatric hospital, a developmental evaluation consists of a medical doctor, psychologist, speech therapist, and a bunch of tests including the Vineland Adaptive Behavior Scales are a valid and reliable test to measure a person’s adaptive level of functioning, CTOPP-2 (Comprehensive Test of Phonological Processing, Second Edition), and if ruling out Autism the ADOS* The Autism Diagnostic Observation Schedule (ADOS). These tests change frequently. Your area of the country/world may be different. For all three of my children, getting the testing finished took two separate days. In the beginning, we may have had to go to the clinic three times with Lee.
Now here is a big insider tip: As a result of these test results, you may be referred for genetic testing. Please call your insurance and make sure it is covered before they draw the blood for the test. Some genetic blood tests cost over $5,000.00 and is not covered by insurance at all! So do your homework. Most of the time, the county will pay for such testing in my experience. I am creating a resource page that I’m hoping to include financial grants that can assist in cost too.
If costs do begin to pile, I always remind friends to complete the financial aide on the back of medical bills, no matter what is your income is! Depending on how many children reside and how many adults are working, greatly influences what you qualify for. Don’t allow yourselves to be put into collections. Come up with an amount of money you can pay monthly. Financial issues on top of special needs life can be unbearable (I know). Taking these steps does require some extra effort, but the less stress is so worth it!
If your child is school aged, it is a whole different road. Then, testing is usually done through the school district. You can get assistance in finding answers with a pediatrician too. But often the first step is at school.
Ask for a MFE (Multi Factored Evaluation) or an ETR (Educational Team Report). The school district is to respond within thirty days. If you disagree with their findings, it is your right to ask for another private evaluation. Get to know your rights at: IDEA (Resource for Individuals with Disabilities) and Wrights Law (FAPE – Fair and Appropriate Public Education). I almost laughed out loud when I typed that. Anywho, if your child is shown to have a disability, welcome to the world of Acronyms! Yay. Sigh.
If your child is deemed “Disabled,” then an IEP meeting will be held. I will also do posts on IEPs and what they entail and what our rights are as parents/caregivers/legal guardians. Often parents have to advocate to be able to have a positive education path set for their children. Think of the term, the squeaky wheel gets oiled. Be prepare to squeak, maybe even not sign the IEP and go on to mediation. All these circumstances are laid out in the above links.
Remember, when communicating do EVERYTHING in written form, preferably on computer where you can easily keep track of communications. You might consider making an email file of all your requests and responses. Sometimes if an administrator suddenly suffers from Amnesia, this is helpful in setting the facts straight. I learned the very hard way, no more phone calls!
I will also create a list of all the “fun” acronyms because after being in Special Needs Land for eight years, I just learned yesterday at Sophie’s IEP (Individualized Education Plan) that ELA stands for English Language Arts. So I’m sure the list will be an always working expanding one.
What I can contribute now are two infographics that hopefully simplify this process.
I want to encourage you parents and caregivers and professionals alike to keep swimming (Finding Nemo). Just Keep Swimming! Keep on keeping on until you feel at peace and confident that you have as good of a picture as possible through diagnosis and testing, of what is going on with your child as possible. No matter how many obstacles you encounter, keep on the journey until you know. Keep “swimming” until you feel good about your child’s education, placement, and therapies. Keep going until you know you have left “no stone uncovered.” Sometimes the answers come swift and easy, but many times it is a slow painful plod uphill, naked, in the snow – lol!! Hopefully, not that bad, but often criteria changes, medicine is regulated, curriculums come and go and yet our children still need help. So through it all, keep on. Our children are our future.
Be blessed. Enjoy your child. Look in their eyes. Hold them. Kiss them (even if you have to wait til their asleep, been there done that). But enjoy them as a person, no matter how severe they are. Find inroads to foster relationship. Don’t get drowned in therapies and test results. Be balanced and stay tender. The special needs journey definitely isn’t a sprint, so don’t exhaust yourself in the beginning. Be ready for a long, hot and sweaty marathon. Hopefully it will be a quick sprint, but be prepared in case it isn’t. I know you can do it! These children are ours for a reason. Let’s step up to our assignment and go an excellent work for our children. If we don’t advocate for their full potential, who will?
I love you. I believe in you. I know you can do it!