Let Me Tell You About My Friends-Post by Aimee

I wrote a post the other day about Sensory Issues. Scratch that. I thought I wrote a post about Sensory Issues and that was all it was about. Just a couple hours after I had posted it my phone began ringing and ringing. I was in Costco so I didn’t answer, then I started to get texts all of these were from my friend ‘C’. I finally texted back to ask what was going on and she urged me to request a behaviorist. She saw and read what I could not see. Certain things I had just begun to accept as sensory seeking were in fact behaviors that could be worked on. As soon as she said this I began to get that familiar nervous knot in my stomach. I didn’t want to make phone calls, write emails and ask for help; not because I don’t believe ‘C’ but because I am afraid of rocking the boat. What ‘C’ helped me see is that I am not just asking for fun but because this is help my daughter really needs. I am telling this story because the only way I get through this stuff is with help from my friends.

What I really want to tell you about is the remarkable village of women I belong to. I am surrounded by strong lady warriors. Women from all walks of life who never let me fall. Some are mothers of other special needs children, like ‘C’ and ‘H’. These two have showed me the ropes in so many ways. They have listened to me cry about not knowing how to get help or what to do. We have laughed together at the quirky things our kids do and our families have celebrated together. Because of them I have been able to direct other moms to things that may work for them. Others are mothers of typical boys and girls. While they may not completely understand all our challenges they know my family and accept us as we are. These women sit patiently as Sophie asks them the same question over and over. They smile as she pulls toy after toy from her overfilled pockets. Hell, most of them even let Sophie sniff their hair! Then there are my miraculous sisters! They are not my sisters by blood or marriage we share a much stronger common bond. First on the list is ‘MB’; she is a cross between a fairy godmother and mischievous pixie. Her eyes sparkle when she talks to Sophie. She listens with her whole self and because of this she is one of Sophie’s favorite people. ‘A’ is a super awesome Canadian transplant that Sophie likes to talk Mexican food with. There is a beautiful young woman who talks to Sophie on the phone and was able to come teach her art for a while. I have a friend she calls her beach buddy and on days when we all at the beach together the two of them stand at the water’s edge and stare out at the sea. One of the women is a pretty blonde educational therapist whom Sophie is extremely drawn to. I am not exaggerating at all when I say that there are dozens of friends like this I could write about.  All of the women are so much more than just nice to Sophie. They are my life line. They really want to know how I am feeling when they ask. I can tell all of them that my day stinks or that I feel sad. I can share my joys and gratitude with them. I am thankful every single day for all the above mentioned women and for all the incredible friends I have because the only way I get by is with a little help from my friends.

 

Our Newest New Normal

When I was fourteen the cost to ride the Big Blue Bus of Santa Monica was twenty-five cents. My friend Laura and I would climb on board and ride the entire loop for hours.  We sat in the back and talked, watched the UCLA students get on and off and stuck our arms out the windows as we sailed past the beach. Sometimes we got off in Westwood and saw a movie. On hot summer days we got off at the beach carrying folding chairs and towels down to the water.  I grew up in an era where these things were possible as long as I got home before the street lights came on no one seemed to mind how I spent my days. This was normal.

When Emily was fourteen she had already been to countless slumber parties, gone away to summer camp multiple times and had been a dedicated and self disciplined dancer for seven years. I always knew where and who she was with and made sure she was supervised. She did not have the freedom that I did as a kid but I did not have to accompany her everywhere she and her pack of girlfriends went. When Emily was fifteen she was accepted to Alvin Ailey in New York City for a summer dance intensive. Bill and I sent her. She is a dancer and this was a dream come true.  She took the bus into New York each morning from Hoboken alone. This was a new normal.

Sophie is fourteen. She has never been to a sleepover. She rarely goes to parties. I do not allow her to cross the street alone. It is uncommon for me to even send her to the next aisle of the supermarket. I never imagined that I would still be walking her to the bathroom in public places, talking her down from tantrums in stores or hushing her verbal tics when people begin to stare. I worry much more about people being cruel to her. My heart aches at the thought of kids teasing her or calling her names.   I keep her next to me because this is the newest new normal. This is what is required for a teen who does not understand what and who a stranger is. She does not have the skills to handle money, has no concept of time.  My girl cannot recall telephone numbers. In so many ways she is several years younger than her age.

 I will let you in on a little secret… I love how much time I get to spend with my teen! A typical fourteen year old would seriously balk at their mom holding their hand to cross the street. Few of them would enjoy having their parents walk them into and out of school and even fewer want their moms hanging out at ‘play dates’. I get witness her life. I attend all her extracurricular classes. The mothers of her friends are my pals and support system. These women get what it means to have a child who is different, they understand the unique tired we feel.  I frequently talk to her teachers and coaches.  I get to observe her at dances, meet her boy crushes and be a very active part of her everyday life. This is our newest normal. Yes it gets tiring to go everywhere with her and to constantly have eyes on her but the reward of really sharing her victories is well worth it.