My daughter has two disorders that make each day a huge challenge for her. She has dyspraxia and SPD. Simply – very simply – the first is a motor planning disorder and the later means her nervous system reacts differently to any sensation. For her system years ago, all sensations felt wrong to her. So she cried or had a meltdown.
Add both together and that her SPD was so severe, you can imagine how hard her early life and school years were. Her disorders affected life at each and every turn. Therapy in one form or another has been part of Elizabeth’s life since she was two years old and wonderful, amazing gains came of it.
The thing about being a mom of a special needs child is that each child is different from the next, even if they have a shared diagnosis. Therefore, each mom is dealing with different things, different reactions to situations, different accommodations needing to be made etc…but even with that said, we are in a special club. This club includes moms who have been members for a number of years and moms who are looking around at a school room for the first time. The club includes moms who are strong advocates for their child as well as those who are learning just what it takes to keep all things in line.
I can say from my experience that I have never felt a real part of the activities of the school. Not to say that we have not participated in the different fun things that school typically do each year. But I just have never felt natural about them. I guess given Elizabeth’s disorders there was always that conditioned natural nervousness I carry as I wonder “will she make it through the Halloween parade?” or ” I hope she will be able to stand still on stage when they are singing.” I know so many would say that I perhaps need to be happy she is doing any of these things, and trust me I AM! But unless you have had our life experiences up to this point, others cannot know what it feels like to almost wish away the event… to get to the other side of a school play….to be have them be done, successfully, but done!
Having just shared some private thoughts here, can I hope help others understand why simply feeling included is not as easy as being invited to the event. Included means, for me, the feeling of being relaxed, and enjoying the event. Whether it is to plan the event, set up for the event or go to the event.
I have a friend who has a son with some very serious special needs and as we have been talking, she has shared that being included – feeling included – and having her son actually BE included has taken a lot of work. She has had to advocate for him each day and be there for him as he cannot manage the stress of the day. She said life each day is work. But to meet my friend, is to meet someone who could not possibly love her child more than she does right now! She never complains but she does work hard for her son.
The gift of feeling included, simply signing up to help with a party, or event, with no thoughts other than
“I hope I can fit this into my day” is a gift that I, and others like me, have had to give away.
I can’t feel included entirely when I know others simply cannot related to our life, to our daughter’s needs. It is not their fault, it is just the reality of life. I can be told of an event, but can’t feel excited I make the necessary accommodations for Elizabeth.
I do have my moments where I feel included, where I laugh with other moms, and share a moment or two… and those are great times.
My life with my special child, and your life with your special child, have helped shape who we are right now. I may have had returned the gift of feeling included but I received so many more gifts from my daughter in return. I do feel included in the group of special needs moms and in that group I have met some amazingly strong, funny and wonderful people.
Here I feel included.