I can still remember that moment in the delivery room. My OB/GYN and the neonatologist came into my room after Sophia had already been taken down to the nursery and they informed me, with long, sad faces, that they suspected my daughter had Down syndrome.......
I remember waiting for the rest of the story. There had to be more to it than just that. Especially by the looks on their faces, there just had to be something else that they weren't telling me. But right then, that was it. I can honestly say that I had no idea what that really meant in that moment. An image came into my mind after hearing the news, but that's all I knew. I had just seen my daughter moments before. I had held her and told her I loved her and looked into her beautiful blue eyes and I saw nothing. Nothing except an absolutely perfect little piece of Heaven.
Soon after that we were told of some medical issues that Sophia had and she would be getting transferred the following day to the closest Children's Hospital. This is when all the real fun began. We spent the next month just trying to function day to day, with normal life as we once knew it and this new life of hospitals and monitors and tubes and surgeries....It was hard. But our focus was on our baby and getting her healthy enough to bring home. In these first few moments, Down syndrome was the least of our concerns.
When Sophia was healthy enough to come home, things began to get real. Of course my main concern was just taking care of my new baby and loving her, but was that really enough? Yes and no. She needed me to be a mom. She needed all the love and attention I had to give to her. She needed talked to and cuddled and fussed over, just like any newborn baby, but she also needed more.....
First Steps: An in home service that provides trained therapists to come and work with your child on meeting milestones from the ages of birth to 3 years. Therapy was very important for Sophia, and still is. Milestones that so many parents take for granted, are a lot of work for babies with Down syndrome to meet. Getting your child started with therapy is so important, especially from the very beginning.
Medicaid Disability and the Waiver program: I knew that our family didn't qualify for Medicaid, so I saw no reason to go and fill anything out. Then one day, by chance, I ran across a table set up at the Children's Hospital and they had information about waivers. No one had ever mentioned anything about a waiver or what that meant. But I soon found out that waivers are not based on the parent's income, but the child's income....which was nothing. I was told, that even though we wouldn't qualify for Medicaid based on our income, we still needed to go and fill out an application for Medicaid so that we could apply for the Medicaid waiver. Basically a Medicaid waiver can provide your child with additional services as they grow. There is a pretty long waiting list for some of the waivers, which is why it is important to get your paperwork filled out early. For more information on waivers, you can call your local Bureau of Developmental Disabilities Services (BDDS) office or even contact someone more knowledgeable from Family Voices Indiana or ASK to help you in the process.
See Specialists: If your baby was born pretty healthy, you may not realize that children with Down syndrome can have some health issues, more so than your typical kid. Its a good idea to check in with some specialists to make sure that everything is working the way it should. The Down Syndrome Clinic at your nearest Children's Hospital is a good place to start. They have doctors who specialize in the care and well being of individuals with Down syndrome. Other specialists to consider seeing would be a Cardiologist and a Pulmonologist. A lot of children with Down syndrome have heart defects, some that require surgery, and others that heal on their own. Making sure that your child has a healthy heart is very important. A lot of children, and adults, with Down syndrome have sleep apnea or other pulmonary issues. So having a sleep study done if you notice any unusual sleep patterns or breathing issues is very important as well. Your child should have his or her hearing checked every 6 months in the beginning and an annual eye exam. Some other tests to consider having annually, and these can be done at your local pediatricians office too, are having your child's thyroid checked, doing a complete blood count (CBC), and testing for Celiac Disease. We love our local pediatrician, but we have found great comfort in having our daughter monitored and check annually at the nearest Children's Hospital. They specialize in kids with special needs, whatever those needs might be, and staying one step ahead of your child's health is always important.
Look into a Special Needs Trust for your child's future: Setting up a will and planning for your child's future, should something ever happen to you and your spouse, is something most parents think about. But when you have a child with special needs, who is dependent on government assistance, or will be when they turn 18, it's important to have all your ducks in a row should you and your spouse not be there to care for him or her. Leaving money to your children is a great thing. But leaving money to a child with special needs, can be the worst thing anyone could do. Don't get me wrong, you can leave money to your child with special needs, and you should leave money to your child, but you have to be very careful with how you leave your money to your child with special needs so that you don't effect their services that they may be receiving from the government. A child with special needs is only allowed to have $1500, I think, in their name before it can effect what they receive from the government. If they have more than that, they can be cut from all services they are receiving and in turn have to drain their savings in order to continue getting therapies, providing expensive healthcare for their health needs, and anything else they may benefit from in order to possibly be as independent as possible. Lets just say, that savings will drain out very quickly, leaving your child with no money and back on a long waiting list to get their government assistance back. And what do they do in the mean time? With a special needs trust, your child can benefit from the assistance provided by the government and have their own little nest egg for things they may enjoy doing in the community or to travel to see family or whatever! Setting up a special needs trust is easy, but you do need to see a financial planner/attorney who specializes in doing such things. The wording of the trust is VERY IMPORTANT. When we set up Sophia's trust, we went through MetLife, out of Indianapolis. We met with a financial planner, who worked hand in hand with an attorney, who set up our will and our trust for Sophia in a way that will only help her should something ever happen to my husband and myself. A special needs trust can be a little costly, but it is worth every penny! To know that your child will be taken care should anything ever happen to you, is priceless. There are also payment plans that can be worked out and you can usually receive a free consultation, just to find out more about the special needs trust and your specific circumstances revolving your finances and your child(ren). Of course this isn't something that we ran out and did immediately, but something to consider sooner rather than later.
Most importantly, LOVE YOUR BABY FIRST! Your child with special needs is a child first and foremost. He or She needs love and affection above all else.
Educate yourself on your child's special needs and his or her diagnosis. This will help you to advocate for your child better. You may be the only voice your child has...you'll need to use it!
Get support. Not just for your child, but for you. You need a strong support system in order to help you stay strong for your child. If it's family, great! If it's close friends, awesome! If it's an online support system, fabulous! Any kind of support that you can get will only help you push through those hard times and come out standing taller on the other side. And I have to be honest, there will be hard times. Raising a child with special needs is full of roadblocks and obstacles. It can feel like a fight, day in and day out. But your child will be worth it! You will find greater triumph in your successes as a parent, and their successes as your child, than you can even imagine. Never feel like as a parent you are taking your journey alone, because there is always someone out there who can relate to the same journey. Find them and connect with them. Having support, is so important!
**If you can add to my list of important things to do after bringing home a child with special needs, please comment!