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Mama Time Talk!

Special Needs

Finally! I am a Soccer Mom!

 
As a mother of a child with special needs I have sat on the sidelines for years excitedly cheering for children of close friends who danced in recitals, played baseball, basketball, football and of course-soccer! It is a bittersweet feeling, participating in these events, you are so proud of your friend’s child but at the same time it may be a continuous reminder of what your own child is not able to do.  It seemed that all of the mothers around me had a busy schedule of practices and games almost every night. While I was thankful that our family was not caught up in that whirlwind schedule, there was of course a part of me that mourned for the fact that our son could not participate in these “normal” milestones of childhood.
soccergeoffrey
 
When you are in the midst of trying to get your child well you have to work to maintain hope every day-sometimes every minute.  Doubt can creep in and you wonder if your child will ever be able to talk, to catch a ball, learn to read and the list goes on and on.  I learned from Geoffrey’s neurodevelopmental specialist, Bob Doman founder of the National Association for Child Development (www.nacd.org), to focus on Geoffrey’s potential rather than a limiting label. During our quarterly meetings with Bob, he would remind me that Geoffrey had unlimited potential and that if we provided him with the right interventions with the optimal level of frequency and intensity then he would improve!
 
I also have learned that I had to take risks and allow Geoffrey a chance to succeed. Like all children, sometimes he would succeed and sometimes he would not. Most importantly, much of the time he could succeed with time and practice! When a friend told us about a special needs soccer league and invited him to participate I was overwhelmed with anxiety. Could he do it? Would it be too overwhelming for him? Would the other kids be “mean to him? What if it was a total disaster? Should I put him through this?
 
The risk was worth it! Geoffrey actually asks to go to soccer and is so excited about going every week.  Yes, after eight weeks he still beeps Coach Keith’s nose during practice and hugs the pretty volunteer coach assistants when he is supposed to be kicking the ball but he loves soccer and is improving. He is happy to see the other team members and the older boys are actually very helpful with the younger ones. So, as I watch my beautiful son kicking the ball on the field, I, at long last, give a cheer for him! I then realize that I am finally now a SOCCER MOM and it feels great!
 

Separation, Isolation & Connection

 I can often find so many ways to feel separate, different and isolated. For example, I am an “older mom” of a 15 year old son.  My peers who have children are no longer actively parenting. Their children are independent adults with children of their own. The parents of my son’s friends and classmates are significantly younger, often with young children to parent for years to come.
  I am in the dreaded category of “special needs mom” as my son has ASD, a.k.a. autism. My son isn’t playing sports, or excelling academically or getting ready to drive. 
 Last year I did a crazy thing and took yoga teacher training, making a dramatic career change. Guess who was the oldest student in the training? Guess who didn’t have a dance, gymnastic or athletic background?
    Okay, so I have never been “the girl next door”.  I wasn’t popular, didn’t date much, made my own clothes and had a weird sense of humor. Many of these qualities still hold true today.
 But I have learned that when I reach outside myself, my self-fashioned isolation, I find amazing connection. Talking with another parent about our son’s struggles with adolescence dissolves all our superficial differences. Sharing my thoughts with a young yoga teacher about creating a welcoming & fun space to practice yoga unites us in a common, passionate vision. And when I let it out (instead of taking things so seriously) people sometimes even appreciate my sense of humor.
 

Thoughts on Giving Thanks for Small Miracles

When you have a child with special needs it can be sometimes difficult being around “typical” families. The contrast between what friend’s children are doing and what your own child is not doing can be immense. Friends unintentionally brag about this soccer game and that ballet recital usually without a sense that you are struggling with your same age child’s ability to say “Mama” for the first time. Initially, you grieve and inside you may struggle with the seemingly random unfairness of it all.  Some of us get angry and withdraw from those “typical” families. Others may be lost in blaming themselves or others for their child’s disability. It can be difficult to be hopeful and to see your child’s capacity for growth when the gap between your child and those “typical children” seems to widen every day.
 
If you are lucky, somewhere along the way, you realize that what those “typical” children are doing doesn’t really matter. It is not a comparison. You look long and hard at that beautiful child in your arms and you decide to embrace the small miracles. You begin to celebrate a connection when there was none before. You rejoice in eye contact. You revel at being able to sleep through the night -even if it took until age 4 to get there! You stop worrying about standardized “milestones” and instead create your own! Instead of looking for what is not happening-you begin to notice all that is!
 
Focusing daily on the small miracles can create a positive dynamic between you and your child which encourages more growth. The stress diminishes and is replaced by a sense of peace and inner joy which I have found has generalized to other aspects of my life. I savor the simple moments we have together as mother and child. We laugh and we sing. We watch the sunsets. We take time to make a simple meal together, laughing while we prepare it slowly together. My son has become my "Sous Chef", and over time, an amazing little chef in his own right!
 
 I think in many ways I lead a more joyful life now than many of my more “typical” friends. I see many of them losing perspective about what matters. I see some of their relationships with their children suffering with the external demands that their busy lives place on them-rushing from one activity to another. Do I still grieve at times? Yes of course. Do I still worry about the future? Yes of course but focusing on the small miracles grounds me.
 
Self-help author Melody Beattie says "Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity… It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow."
 
 If you are a mother of a child with special needs, I encourage you, every day to take some time to jot down the small miracles of that day. Get a small journal and start this week. Reflect, on these small steps, not just at thanksgiving time but every day-you and your child are creating miracles together-celebrate them!  
 
After a period of time has passed, you will re-read those journals and suddenly you will be aware that those simple miracles have suddenly turned into HUGE miracles! Over time, We have gone from a world of silence to actual conversations! Huge Miracles!
We hope to see you at a Mama Time Retreat or Workshop soon!
 
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