7 Things I Wish I Would Have Known When I Learned My Child Had Special Needs
Have you recently found yourself a part of the special needs world? I know you didn’t ask for an invitation, but somehow you got one anyway. As I consider my journey as a parent of a child with special needs, I now have the luxury of looking back on the dark days and seeing all of the growth and progress my child has made and the joy that came after the diagnosis. As a mom who may be further along in this journey than you are, I wanted to take some time and share seven things I wish I would have known on diagnosis day.
You are not alone.
First, you are not alone. There are tons of families with amazing little ones who God has made a bit different. These kids can do anything, but it happens in their own timing and with a little extra support and encouragement. In the early days I had convinced myself I was so alone. No one had a child like mine, and no one could relate to what I was going through. I was so wrong. By being vulnerable and transparent and sharing my story, I have been connected with many amazing families walking a similar path. Boldly share your story with others, because when you do, you will start to hear their stories, and form friendships on the deepest level, and you will find your own community of moms on a similar journey parenting the kids God made so special.
Trust your mamma heart.
Second, trust your mamma heart. “It could be something, it could be nothing”, the nurse told me at my son’s two-year check up. My son wasn’t talking yet, which was mildly concerning to me. But my niece didn’t talk until she was two and a half so I was desperately waiting another six months when I was sure he would be talking. However, I had so many other lingering concerns that just didn’t seem to go away. I mentioned to my son’s pediatrician at his three month visit that he actively avoided my eye contact, and at six months I expressed my concerns about him not answering to his name. I was assured not to worry, boys do things in their own time – he seems just fine. But my mamma heart knew there was something different about my little boy. Trust your mamma heart. God purposed YOU to be your child’s perfect mamma. You will not be perfect, you will not do all the things right, but your mamma heart does know what your child needs.
Be Proactive.
Third, be proactive and take advantage of government assistance program for kids with needs. If you suspect your child’s developmental skills are falling behind, or if your doctor has recommended you contact the Early Intervention program in your area, pick up the phone and call. Your child may fall anywhere along the “needs” spectrum. He or she may simply require speech therapy and will catch up to his or her peers within the year. Or, your child may require therapy for many years before catching up. Or, your child may always require therapy and will have accommodations throughout his or her academic career. Wherever your child falls along the “needs” spectrum, early intervention is key. States offer Early Intervention assessments and necessary therapies that are generally free for kids 0-3 years of age, and let me tell you they make a difference! After three, your child may qualify for state-funded preschool and receive therapies through those programs. There are amazing people administering these programs, so please do not hesitate to call and get your child the assistance they need. Their little brains are so malleable at a young age and sometimes just need a little extra help figuring things out.
Do NOT google. I repeat … do NOT GOOGLE.
Fourth, do not google. After my son had been receiving therapy for several months and despite being assured my son was just missing a few key building blocks but would catch up just fine, my mamma heart continued to tell me otherwise. My son had these stares; these blank moments of time where things seemed to stop for him. I would call his name and clap my hands and bang pots and pans and he wouldn’t budge. Then, 10-15 seconds later he was back, smiling and laughing at me because I was being so obnoxious. If you weren’t watching him right when it happened, you would miss it. Maybe he is peeing, I thought. So I let him roam around naked until I saw it happen again. Nope. He wasn’t peeing. I was advised to see a pediatric neurologist, which I did. The neurologist used words I had never heard and ordered an MRI looking for conditions I wish I had never googled. One of the worst nights of my life resulted from unnecessary Google-triggered fear. I fell down a dark hole fearing things that were not even diagnosed. DO NOT GOOGLE, FRIENDS. You cannot advocate for your child out of fear, you can only advocate out of knowledge. Do not mistake Google for knowledge.
Know your insurance company.
Fifth, get to know your insurance company. You’ll be surprised what you can learn by calling your insurance company and asking a few questions. Remember item number one — You are not alone? Well, you are also not the first parent to call the insurance company asking what benefits are available for their special needs child. Ask for a caseworker, which some companies provide for families of kids with special needs. Some also will connect you with a Nurse Practitioner and a Pharmacist to ensure you are getting the best rates covered under your plan. Find out what kind of therapy is covered, how many sessions you get per year and who is considered in-network. Insurance can be incredibly overwhelming and complicated. Right now, just start with the call - and ask if you can get a caseworker.
This is not your fault.
Sixth, this is not your fault. Whatever journey you find yourself facing with your child, please hear me when I say this is absolutely not your fault. I have felt this kind of mom guilt many times. Eventually we learned our little guy has epilepsy. Those brief stares I described were actually partial complex temporal seizures. These seizures happened both awake and asleep and went undiagnosed for the first two years of his life. I am his mom, how could I have not known? I still find myself going back to the day he was born, when a nurse told me during labor he wasn’t getting enough oxygen. I put the mask on but maybe didn’t have it on long enough, or didn’t put it on soon enough. He was born with the cord wrapped around his neck, and had a pretty low APGAR score, but no one mentioned anything and no one made a big deal and no one checked up on it after. I didn’t recall any of these details until after his diagnosis; none of them were significant at the time. But I see them all now. Could I have done something differently? Was it my fault? I still ask myself these questions, but do not allow yourself to play into this lie. This was not my fault, and this is not your fault.
Believe in the sovereignty of God.
Seventh, and most importantly, believe in the sovereignty of God. I struggled with this for along time. How could a good God allow this to happen to my precious child? Well, because we live in a sinful world, and things are not the way God intended them to be. God did not DO this to my child or to yours. Yes, he allowed it to happen, because He is God. Remember, God is perfect and we are ALL made in his image. Isn’t it amazing that my child shows the world a side of God not all typical people display? God is perfectly sovereign, and your child was not a mistake. Allow God to meet you where you are, to provide even more than you could ask for or imagine. Allow God to work through your child and show you things about Himself you never would have seen or understood otherwise. Allow Him to take you on a journey you would not be able to walk without your special child.
When my son was just a brand new baby, I used to rock him and whisper to him, “God made you special”. “God made you SO special”. I didn’t know then how special God had made him, but my mama heart knew even then how special he was.
So, after all that, what do I hope you heard? I hope you heard that it will all be OK. That your child will do all kinds of things, it just may be on a different timeline than your pediatricians “developmental milestones”. My purpose is to tell you to trust your mom heart. To tell you to listen closely to the people God places in your path to reinforce the things He has already whispered to you. To encourage you not to run from the things you are afraid of. My purpose is to remind you that you are your child’s fiercest advocate and that God chose YOU to be their perfect mom. You are already equipped to be exactly what your child needs. My purpose is to assure you that whatever unknowns you are facing with your child, it was not your fault, nor was it a mistake. To remind you that God is sovereign and perfect. It could be something, or it could be nothing. But if it’s something, you will be so glad you acted sooner than later. Trust your mamma heart, and believe that God loves your child even more than you do, and He has a plan.
And dear friend, if you have found yourself in this special needs world and need to talk to someone who gets it - feel free to reach out. I am happy to share our story, and support you along yours. Do not walk alone.
xoxo,
Corie
You are not alone.
…it will be OK.
photo credit: Jamen Rhodes Photography