I think fear of the unknown is probably one of the worst things we can think about. This happens in all aspects of life, but when we have a child, and that child’s future has been all planned by us, the parent, then it is hard to give birth to the unknown, the child with a disability, or a child that is diagnosed later in childhood.
What do we do? How do we do it? Is there any help or do I even want help? Do I want to keep the child, and if I don’t what kind of person am I? What is my life going to be like from now on? BREATH!! Take one day at a time and breath. You don’t have to figure this out all at once.
The first thing you want to do, is just what I was told on that first day, of my daughter’s birth, just take that baby home and love her. It’s just a baby. Sure, a baby with extra needs, maybe with health problems, delayed, or physically impaired, but still just a baby. So your job is to treat this child as you would any other child, with a few exceptions for their disability. Notice I said a few exceptions. A coddled child is a spoiled child. A guilty parent’s actions can create a spoiled child. There is absolutely no need for guilt or shame. There are so many resources in this day and age for you to explore. Sure, it takes time and energy, maybe more at times, than the “normal” child but you can do it.
Each child, whether “normal” or disabled is an individual. If you have a child with Down Syndrome, you can’t expect your child to be like all the other children with Down Syndrome. I know, because I have 3 girls with Down Syndrome and they are all as different as can be. One is very high functioning and is a walking fact book on anything that has to do with movies, music, or TV. She is independent, sometimes too much, can be outspoken, knows her disability, and is very smart. She has two boyfriends and they both adore her. The middle one, who is adopted, is the princess and will tell you so at every chance. She does help around the house, when the spirit moves her, but doesn’t mind if you treat her like the princess she thinks she is. She is well aware of how she looks, has a steady boyfriend, can carry on a conversation when she wants to, and has one of the most positive outlooks on life that I have ever seen. I always say, between her and her sister they have enough self-esteem to bottle it, sell it and make me rich. The youngest one is not quite as high functioning as the others. She is also adopted and is our baby. She can pull a joke on you, she knows what she wants, she can make you laugh, and is very well adjusted to her surroundings and rarely forgets anything if she has been there once, or has done it once.
Your heritage, genes, and environment, all create a special child, regardless of ability or disability. Each child has different needs, so you need to figure it out for this child, just as you would do for any child in your family.
At times it will be tough, you will laugh, cry and become frustrated with the “system” but you will reap great rewards. The first time they sit up, crawl, take a step, or say mama is an event to be celebrated. You will be amazed at how proud you are of each little accomplishment, of how much joy a smile can bring to your lives.
Take your child everywhere. Open up their lives to the world around them. The more stimulation the better. Don’t be worried about what others will think. Most of the time they think you are an amazing person, so think about that. I can’t count how many times I have been told what an amazing person I am. I don’t think that, because it is my daily life, but it sure is nice knowing others do.
My girls have been to Paris, on cruises to Mexico, Mexican Riviera, the Caribbean, and the Mediterranean. They have also been to many places in the US and Canada.
. They love to travel and adapt very well to different situations. They know all the restaurants in town, movie theaters, and shopping. We don’t sit home because learning, is out there.
If your child is physically involved, or has health issues, then it will be harder to be so active but you can adapt some activities that meet their level of tolerance. Maybe an hour at the zoo instead of all day, a ride in the car to see snow, lakes, the rain, or many other things. A car ride can be very stimulating for a child who is in a wheelchair, or has health issues that keep them more limited. These are just a couple ideas that will help you choose what is best for your child.
This will be an adventure. It will not always be easy, it will not always be happy, but then our lives also have many ups and downs that we must deal with, so this will just be another path to take. I encourage you to go forward with an open heart and open mind and see what is next around the corner. But remember, just one day at a time.