Ellie is 14, a dancer, a soccer player and is neurotypical. She loves hanging out with friends and shopping. She also is an amazing sister. Ellie has great skills when thinking of creative solutions to help her siblings overcome obstacles. Because Ellie is so responsible and a natural leader in the family, we have had to be careful about not taking advantage of her abilities. Balancing the parenting of special needs children and the needs of typical children can be tricky and we haven't always done our best. But it is something we are learning to balance.
Samuel is 13, and also plays soccer. He loves boy scouts, camping, fishing and all things outdoors. Sam was exposed to meth amphetamines during pregnancy and as a result has severe ADHD and learning challenges. A few years ago Sam's behavior changed dramatically and he no longer wanted to go to soccer practice and began sleeping a lot more. We after 2 years of searching for a solution, we discovered with the help of a fabulous immunologist, that Sam has Common Variable Immune Deficiancy (CVID). His IGG and IGM levels will rise with immunization shots, but then will dip again. It is as if his immune system "forgets" that he is immune and his body is constantly fighting infection. Sam now has infusions twice a month with a drug called Hizentra to boost his immunity.
Grace is 10, has an amazing imagination, and loves to move. She can't/won't sit still and even stands while watching television. Grace has Fetal Alcohol Syndrome and Cerebral Palsy. Our neurologist told us that she had written in her notes after first examining Grace that she would most likely not talk, walk or interact with others. She told us because Grace does all those things now and she called Grace a miracle baby. Environment and therapy were crucial in Grace's development and progress.
Lia is our last child and is 9 years old. She is neurotypical and the life of the party. Lia loves entertaining and will dance, tumble and sing for anyone. Lia loves playing with friends and being busy. She also loves to read and gets all A's in school. We are so grateful for our little caboose and all the fun she brings to our family.
Raising 5 children is a crazy, fun experience, and when you add Autism, Fetal Alcohol Syndrome, ADHD, learning disabilities, Cerebral Palsy, "behaviors" and long term illness to the mix it can become completely overwhelming.
BJ and I have had to learn coping skills and strategies to help manage our lives so that we can be available to help our children. Believe me, there were plenty of days I wanted to curl up in bed and do nothing. And to be honest, some days I did. There were days I got the children ready for school, sent them off, put the littles in front of the television and went back to sleep. And right before they came home, I would get dressed and start dinner. Those were tough days.
Depression, anxiety, divorce and feelings of inadequacy are so common when you parent a child with special needs. But there are ways to overcome these feelings and the voices that nag us that we aren't enough, we aren't doing enough and we should just give up.
If you are just starting your journey, or if you have been doing this for years, I hope we will have some things to share that will help us all in our quest to help our children be the best they can be.