We are knee deep in evaluations……2 down and 2 to go.  It is one of those weeks, the kind that are filled with all kinds of emotions.  When you have children that have special needs of any kind there is always worry….concern…fear lurking in the back of your mind.  We all become fantastic at masking it, putting our best foot forward and thinking positive but there are weeks that all the masking and running forward just don’t work.  They are the weeks of questioning ourselves, our programs, our therapists and our routine.  They are rock hard weeks that make you feel like you are lost.


This happens to me every evaluation week and because I am the OT, PT, ST, Recreational  planner and teacher there is no one to blame and no one to question because I already know.  I am aware of the gains they have made and I am aware of what they need to work on.  We have the MOST amazing therapy group that creates individual programs for each of our children and I am so thankful for the support they not only give my children but the support they give me.  You can read about them here.

So as I sit here the night before the last 2 evaluations I am regrouping……pulling myself up by the bootstraps and thinking about how I am going to tackle our new set of goals.  My children are light years from where they started but still have miles to go and sometimes that is overwhelming.   So overwhelming that there are tears….oh yes, I called my Mom today and cried.  I cried because I want all these obstacles my children have to overcome to just go away.  I am tired for them….I am tired for the fight that they have to fight.  It happens……  I am thankful my family can encourage me and remind me how far these little beings have come when I can’t remember.

It is funny we Moms of special needs children, we are strong, we fight the fight everyday and we encourage each other.  We pass around inspiring stories about why we are strong and how we know it like this….

Regular Parents vs. Special Needs Parents

Parents, a stranger walks among you. We look like regular parents but we are the hybrid to your standard engine. Our child’s disability altered us, enhanced us. Many words describe us: resilient, creative, protective, emboldened, sympathetic, fierce and determined. We are special needs parents. How do our lives stand apart from your own? Take a look under the hood and see for yourself.

Regular parents soak in the tub when they want to unwind.
Special needs parents consider a bathroom break a luxury.

Regular parents think OT means overtime.
Special needs parents know that OT stands for Occupational Therapy.

Regular parents know the names of all their friends.
Special needs parents have lost touch with most of their friends.

Regular parents tell their kids to wake up and get dressed in the morning. And they do it.
Special needs parents put on battle gear to get our kids ready to start their day.

Regular parents think accommodations refer to hotels.
Special needs parents have memorized the top 20 accommodations for their child.

Regular parents wave goodbye as their kids run off to catch the school bus.
Special needs parents get awesome door-to-door bus service for their child.

Regular parents judge other moms when kids have tantrums in stores.
Special needs parents say to themselves, “Hmm, I sure can relate to that.”

Regular parents complain about driving their kids to sports and recreation classes.
Special needs parents grin and bear the weekly trips to specialists, doctors, and therapists.

Regular parents kids have a teacher.
Special needs parents kids have a team of multiple people and professions.

Regular parents talk about accomplishments.
Special needs parents talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular parents relax with their kids during the summer.
Special needs parents start their second job as home teachers, therapists and skills coaches.

Regular parents hope their child finds a good career.
Special needs parents are hopeful someone gives our child the chance to work.

Regular parents enjoy reading the latest best selling book.
Special needs parents should receive an honorary degree for all the disability books they’ve read.

Regular parents go out for dinner and a movie with their spouse every month.
Special needs parents have a date night with their spouse every…wait, what decade is this?

Regular parents complain their kids won’t eat their vegetables.
Special needs parents are so desperate we consider chicken nuggets to be a legitimate meat product and throw in ketchup as a vegetable.

Regular parents kids go to play groups.
Special needs parents kids go to therapy groups.

Regular parents meet for a ladies/mens night out.
Special needs parents get together at support groups and forums.

Regular parents have medical claim forms that fit in one file folder.
Special needs parents will tell you a small forest was cut down so we could receive our claims.

Regular parents have time to cook a full dinner every evening.
Special needs parents will never admit how many times we’ve picked up fast food

and they are oh so true…..and they inspire us to keep encouraging, keep smiling and keep moving forward….but sometimes in the midst of it all we are tired, sad and deflated so the tears flow but i know that is ok….. and next week I will be stronger, happier and ready to roll with the new routine.  I will integrate the changes and watch my kids bloom.  These tears are good because for me they clean the slate.  They renew my emotional chalkboard because for what ever reason what I was writing on that board was not working.  Now that it is clean I can start over and write what matters…..the future of my kids.  They are strong……so much stronger then I am, and they over come things that I never dreamt of overcoming.  Their path is so inspiring to me and I am blessed that they are letting me be a part of their journey.
Life is hard and it is raw at times but it is good, soooo very very good and the lesson we learn over and over again is to dance in the rain.  Try it…..today was more like swimming in the rain but it was good.
Please do not forget to check on 5 boys + 1 girl = 6 on facebook and hit the like button.  I will be posting casting calls as all the amazing designs come in.  If you like the page you will be able to respond so that your child can be the next superstar!
Thanks so much to Princess TUTU’s for being a part of “Changing the Face of Beauty”.  Check them out, this sweet Mama has a beautiful baby boy who also has that magical extra chromosome and because of him she was inspired to have her TUTU’s photographed on all children!
Happy Friday everyone!!!!