Today was my oldest son's first day of school. We just moved and he is starting the first grade in a new school. We were excited and talked about it for weeks. We had his backpack packed with 3 dozen freshly sharpened pencils, 2 dozen Crayola crayons 24 pack and so on. This morning I had one of those autism wake up calls. The sound of stimming a toothbrush against a counter in the kitchen by the stove light at 5am woke me up. I got out of bed and there was Aydan. He smiled at me and opened the refrigerator door. I gave him some food, he pooped, I cleaned him up and took him back to bed. Several hours later we went back to sleep. A half an hour later my alarm went off. It was time to take Avery to his first day. I was so tired. I got up, made my coffee, woke up Avery, he got dressed and we went. His class was already seated and none of the parents were still there, (we were about 5 minutes late). I saw a hub of parents circling around with their cameras capturing the excitement. I had forgotten mine. After dropping him off, I went home, woke up Aydan and took him to our IEP. He stimmed and I listened. After it was over I went back home and waited for the time to pick up Avery. Again, I was late... Again, there was a circle of parents with cameras (I forgot mine... again) and I couldn't find Avery. I looked high, low, in the playground, I shouted his name, everything. Finally, the teacher saw me and we began to look together. When I found Avery he was in front of the classroom door. I could see his face was red and his eyes were welling with tears. Another parent found him attempting to cross the street trying to make his own way home and brought him back to his classroom. He was angry with me. I was too. The teacher explained that this happens and in the future we must have a designated meeting spot. See, we had already missed the orientation for school the previous day because I had Aydan's IPP meeting. I didn't know where the kids were supposed to go and didn't think to ask. When I first started writing this post I thought it was about siblings of autistic children, then I thought it was about Avery but as I write, I realize it is about me. It isn't about what Avery's going through but rather about how I feel he must feel. In reality I don't know that but I imagine his disappointment in me and as it is reflected in myself. I am disappointed in myself because once again I became distracted by autistic world. It consumes me at times and I allow it to because it gives me purpose. If I weren't autism mom, who would I be? Let's back up and start at the beginning.
When Aydan was born I was very nervous about how this would go over with his then 2 year old brother. I had just barely stopped nursing big brother, Avery and I was wrapped with guilt about it. Imagine your mother stops nursing you and two months later a new baby who is getting your mother's milk. When Avery came to the hospital to visit me and the new baby he was excited. I could hear him running down the hallway saying, "Mommy.." He entered the room, big smile with markers and paper in hand. At two years old Avery was an amazing artist. He especially loved to draw the bad guy from the "The Incredibles" and he always had to carry marker and paper in case inspiration struck. When he saw me and the baby in the hospital bed he smiled. He said "baby". Everyone was passing the baby around from my husband to my mom and his mom and sister and so on... Avery was then able to climb up in my bed with me and have a little drawing session. We cuddled and drew. After a short while the baby began to cry and my husband handed him to me to nurse. I began nursing him and looked to see Avery's face. He was pissed. He took my mom's hand and indicated he wanted to go. He didn't even say good bye. A little while later my emotional wreck of self began to cry. The nurse came into the room and asked what was wrong. I told her about what had happened with Avery and I'll never forget her response, "it's hard to be all things to all people".
At home Aydan was a difficult baby. Like many babies who will later become autistic, he developed quickly but seemed clingy and cried whenever I left his side. I remember this one morning I looked over at Aydan to find him smiling and awake. He was so precious that I lifted him into my arms and in a motherly nurturing way I showered him with kisses and words of love. I felt someone's presence and looked over to find Avery standing in the doorway watching me as if I had cheated on him. I went to say something to him but he ran away. I tried to put Aydan down so I could go after Avery but he cried and I felt trapped.
The next two years would go by and we all began to adjust but as Aydan's behavior became odd and he did not show interest in his big brother like other younger siblings often do, we set in motion on the journey that is autism. Once again I worried about Avery. How would Avery a then 4 year old boy understand? Would I ever be able to give him the attention he deserved? Shortly after Aydan's diagnosis I read books about siblings of the disabled. These are great books if you're trying to increase your mommy guilt but mine was quite high enough. I lugged Avery around from appointment to appointment where he was told "only your brother can play in the sensory room" or "these toys are for your brother". Day in and day out the therapist came to the house with a suitcase full of toys...for Aydan. Eventually we could all see the toll this had on Avery and the therapist started bringing toys just for him. I also began to spend afternoons in Avery's room playing castle or whatever game he wanted and allowed the therapist to do all the work. Further relief came when my husband started to incorporate Daddy and me Wednesdays. Every Wednesday after school he and Avery would go to Chuck e Cheese or Round Table to play video games and get their gluten on. The years went by and we got through it.
Fast forward to today and Avery is a bright, sweet and sometimes grumpy boy. The other day he decided to take on the roll as Aydan's therapist. He had a three point plan. First get Aydan off his toes. He did. Then get Aydan to talk, He managed to get him to say "hi". Then get him stop stimming. This was tougher so I suggested he stim with him. Avery did a marvelous Floortime therapy session and after 15 minutes or so said to me "it worked and it was easy". You see when Avery stimmed with Aydan, Aydan smiled and this opened the door for a little light wrestling, tickling and fun.
I know I can't always be Supermom. In fact I despise the individual who ever came up with the term. I can be proud of the fact that despite my short comings, I've managed to make some pretty great kids.