I have been asked what prompted me to begin Special Needs Siblings right now. Honestly, my response is my children. I truly wish I had begun it earlier, but better late than never! I am the mother of five amazing children, the eldest who has autism and epilepsy. The roller coaster ride I am on is one thing…but being the mother and witnessing the journey of these five is priceless.
Jada (8), Rose (1), Caleb (9), Raymond (1), Christian (11) – [left to right]
When Christian was 2 he was diagnosed with epilepsy and autism. He has had multiple seizures on a daily basis since then. He is on a variety of medication, sees numerous doctors, and several therapist. He has been progressing in the way of communicating, but we still have a ways to go. Now, when it comes to my other children I always feel spread thin because of all that goes into Christian. This is not the life you see on television or read about in a magazine. As the mother, I am responsible for the wellbeing of my clan, but indirectly all the other children are affected. I can recall when Caleb was 6 he laid his weeping head on my lap shared how he wished he was sick. He went on to explain that he wanted to be checked out of school, he wanted to go to appointments, he wanted to not have homework… his requests continued. My heart sunk. I went from being appalled he would want to be sick, take daily medication, have difficulty using facilities or being able to communicate. Yet, on the other side of my seesaw I felt a heart pounding ache. I had no idea he felt so left out when it came to his brother. I tried to keep him involved at school, in extracurricular activities, visiting for lunches, but still he could sense the separation. At the age of 6, he could sense the differences evolving. One thing I never wanted was them to feel at odds with each other.
Now, I was already involved in my local community groups for Christian: Autism, Epilepsy, Special Needs, but nothing was catered specifically for the siblings. There was no assistance for the special siblings who accompany their differently-abled sibling throughout life. These are my reasons why. They are my late night researching; they are my early morning phone calls, my hundred emails… Special Needs Siblings are so vital to a healthy family. Sibling rivalry is common. Sibling discord happens. In families with special needs it can be easy to not see the unhappiness, the frustration, the anxiety our special siblings feel towards their life or their sibling. Communication is everything and being able to express their feelings without judgement. Feelings are never wrong. Actions can be wrong. I wanted to make an atmosphere full of acceptance, understanding, and pride. This is a place our parents can show off their special siblings in a positive light. This is a place siblings can talk to other siblings about their personal highs and lows. I have had the pleasure of meeting adult siblings and they are filled with the most patience, passion and love. I personally like to think that is in direct correlation with being a Special Needs Sibling.
Special Needs Siblings are proud of their siblings. They are proud of themselves, their families, and to share their hearts.
How do you feel being apart of a special needs family? ups or downs?