If I Had A Million Bucks

Crazy to think I would even rise to that level of freedom.  No, really.  To think I would be financially free and not be burdened by the reality of monthly speech therapy and occupational therapy co-payments and the ABA therapy bills that insurance doesn’t even cover (yet).  Hec, yes a million bucks sounds really good right now.  But you know what?  I don’t know about you, but I can’t even look at a bill and think, “What a burden this is”.  I can’t tell you how many times I’ve looked at my child and thought, “Thank God for all of those therapists and teachers that have made such an incredible difference in my child’s life”.  Those years that he received early intervention has really paid off.  Those folks that paid lots of money to colleges to be educated in special education so they could make a difference in my son’s life.  I am forever indebted to you for the difference you have made.

If I had a million bucks, I would spend it on research.  I want those educated folks that have studied microbiology and genetics to find a cure for Fragile X and Autism.  They spend a lot of time, money and energy making new discoveries and looking for a cure.  I want them to find a cure and I would be willing to spend my money to help them do just that.  I wouldn’t change a single thing about my son.  He’s amazing in every way and he brings us incredible happiness.  However, if you knew my son, you would understand that there is a barrier between him and the world that you and I know and understand.  That barrier appears in the form of stares and comments from others like, “You’re a baby”.  "You’re stupid”.  “Why does he rock back and forth like that, mommy?”  "Dude, chill out!"

My son is most likely oblivious to the long stares and unfiltered comments for now because he is still young.  But soon he will enter grade school and encounter other kids his age that act different and talk different.  He will begin to feel different from the others.  He might not make friends as easily as his typical peers.  However, he is the most amazing, happy, joyful, playful, loving boy you’ll ever meet.  How sad I feel for those that could miss out on knowing this amazing boy because they might choose to tease him due to his sensory input needs and noises he'll make that aren’t “normal”.  Many kids will choose to take time to understand the incredible beauty my son possesses inside.  My guess is those children will meet a friend for life.  He has the most contagious giggle you’ll ever hear.  He’s my beautiful son and I love him incredibly.  Please take the time to giggle with my son.... not at him.  Friendship is a beautiful gift and it won’t cost you a single dime.  I promise.

My little boy probably will not fully understand the true concept of money in his lifetime.  Someday he'll make some, save some, spend some but never stress out about it.  Lucky him!  

www.fragilex.org

Sometimes I Forget

Sometimes I forget that my daughter is four years old.  Teachers tell me she has delays and functions at a different level.  Evaluations by medical professionals tell me that she is behind in development in relationship to her peers.  ASDM testing puts it in writing the level of her intelligence is based on ages and how she did during this test.  However, in age based on her date of birth, she is four.

She is four and wants to play dress up with jewelry, accessories and headbands. She wants to help me make things. She knows the direction we are headed in the car and if we do not stop at our usual destination, she will let me know from the back seat that she has noticed the difference.  When we stop at the park and remain in the car to enjoy a quick lunch by the water and do not get out, something is not right with that situation. She knows that when we go to the water, we get out and play in the sand. She knows the alphabet and can identify both upper and lower case letters. She can count to twenty by two's (and regular).  She is four years old and she knows.

I want to remember that she is listening to everything I say and watching the things I do. She might not comment back, but she knows...

A Reminder For My Wrist

I was sitting in a local coffee shop having a latte with a friend last weekend when I noticed she was wearing a bracelet, much like the colorful ones you see folks wearing to help spread awareness or advocate for a loved one.  Hers read, “Autism”.  I told her I really liked her bracelet (in my mind I was projecting to the future thinking how awesome it would be to have these made for our new Highline Special Needs PTA).  My friend told me that she has three sons; one of which lives with autism and another that is pending evaluation for ASD (Autism Spectrum Disorder).  She said the bracelet is a reminder for her to be mindfully present with her son during the moments they share together and to do her best to see the world from his perspective. 

In our world today, we are constantly challenged with keeping up with our emails, text messages, voicemail, Twitter, Facebook, YouTube, U name it!  Our kids, special needs or not, no doubt, must have anxiety just watching us try to keep up with everything going on in our own world.  My son, who is 5 and lives with developmental delays and autism, pushes my phone away sometimes when I’m not being mindful to his needs.  I don’t think I have to explain the guilt feeling that comes over me when he must do that.  We are consumed with “real-time” life which gets so much of our attention and it just happens out of nowhere.  Our kids, however, need our attention more than we ever realize.

I’m so very thankful for my friend and the message she sent me that morning.  I am also grateful for our newly formed Highline Special Needs PTA.  I believe together we shall become better educated in the world of special needs with resources we will learn about and sample from.  We will learn to be better advocates for our children and create opportunities for them in a community that is connected, challenging and encouraging.  Best of all, we can all support one another by being present, as well as mindful of each other’s needs and the needs of our children.

I don’t know about you, but I am going to find me one of those bracelets!

Personal Story--Mindi, JC and AJ

This Personal Story was included in the May HSNPTA Newsletter. Every month, we hope to include a short personal story of the journey of one of our families. If you'd like to write a personal story for us to use in the newsletter or the blog, please email us!

Personal Story: Mindi, JC and AJ

We moved from Massachusetts to Oklahoma when our son A.J. was 17 months old. Soon after, he stopped using the few verbal words he knew and stopped all baby signs. He began to have repetitive patterns and would look at things out of the corner of his eye. We took him to our new doctor, who thought A.J. perhaps was delayed due to our cross-country move, but after a few months of insisting something was not right, we finally were referred to Early Intervention.

At age 3, A.J. was diagnosed with autism and, soon after, we discovered there were very few resources for him in our part of Oklahoma. We began searching for new positions and last spring my husband was called to a church in Bellevue and I began interviewing in Burien. We moved to Burien in August and began the process of learning a new school district and new ways of providing services for our son.

It is a journey to navigate new systems and to learn the resources inside and outside of the school system. I encourage parents to reach out to other parents for support and insight. We started the “Parent and Play” support group on the first Tuesday of the month just for this purpose, so that we might get to know other families on similar journeys. I also encourage parents to get as much as they can in writing when decisions are made, because so often there are misunderstandings.

For families new to Highline, we say “Welcome!” We understand the struggles of learning an entirely new school district and system and ways of writing and understanding I.E.P.’s. We hope that you will come to one of our HSNPTA monthly meetings—that is how we first became connected with other families, made friends, and learned more about Highline. Whether you’re new to Highline or you’ve been around for a while, we’d love to get to know you, your child and your journey.

Welcome to our blog!

This is the Highline Special Needs PTA Blog! We will invite authors from our HSNPTA community (parents, students, educators and community members) to share stories of their personal experiences here. We hope this blog can be a resource and inspire others to be involved with the Highline Special Needs Parent-Teacher Association and the greater community we serve.