Reflecting on 2013….

Happy New Year Everyone!

I am often brought back to the day I stood in the parking lot of Valley View, not knowing one single other par­ent of a special needs child at the school.  Inspired by my son’s amazing pre-school teacher, an idea was born.  Determined to succeed, I was on a mission to find another mom or dad willing to hear a crazy idea.  I was about to embark on a path of another’s failed attempts to start a special needs PTA...would I succeed?  Without a clue what I was doing or where I was headed, I was filled with the motivation and desire to pursue this big, boda­cious idea which could only be fueled by the love for my son, Nathan.

Then there was Kim Weaver. Bubbly. Approachable. Incredibly nice.  Willing to listen to my crazy idea. “How would you like to help start a PTA?”  Kim was very sincere in her reply of, “Well, I’d love to, but we are plan­ning to move away soon.”  (Yay, she didn’t say “no”.) And that, my friends, was the beginning.

One year and three months later, Kim, you and I have all become part of a big, bodacious idea that has morphed into a reality.  With a long pathway ahead full of potential, our children will profit greatly, however, not without help.  Improved accommodations. Better communication.  Positive relationships with schools and teachers. Par­ents educated in their children’s educational rights.  Motivated & passionate teachers. I could go on.  I am no different from any of you, or any other parent for that matter, with regard to wanting equal opportunities for my child.  My amazing son has so much potential to do more than those before him, but only if I can help that po­tential become a reality. Therein lies my passion. You know exactly what I am talking about.

All of us, as well as the parents of the other 4,026 special needs students in Highline School District (2012-13/ OSPI), have a great amount of work to do in order that our kids receive the kind of education that ensures not just an average outcome, but the greatest outcome which will guarantee them a chance for a fulfilling and suc­cessful life as our current research and scientific advances have predicted is possible.  I won’t take no for an answer. And I shouldn’t.

These are exciting times, I feel, for Special Education. A voice of many.  Improved laws in place from which we can stand firm.  Better pathways of communication to get the word out and advocate. We have each other, and for that especially, I am grateful. This Highline Special Needs PTA is a reality because of our combined efforts and talents.  I am very proud of the amazing organization we have become.  I’m forever learning new things and I make numerous mistakes along the way (just ask Kim).  I may not remember the details of yester­day, but I sure do see tomorrow and that path ahead needs some serious road work.

I appreciate each one of you and the contributions you have made to the special needs community, to my own family, and especially, my son. And now with Kim's departure from our organization (and state) I also want to send a giant THANK YOU to her for being willing to take on this position and idea with me.   It would not have been possible without you and we can already see positive changes in the relationships with ad­ministrators, teachers and parents all because we have something in common. A very worthy passion. Thank you for all that you do.

Here's to a groundbreaking 2014 in Special Education! 

"Keep Moving Forward" 

~ From the movie "Meet The Robinson's"

Preparing for Transitions

When our son AJ turned 3, we had two big changes occur: first, we received his diagnosis of autism. Secondly, he was about to begin full-day Head Start at Choctaw Nation in Oklahoma. The children were expected to nap or lie quietly for an hour during the day, and our son could not nap without his beloved binkie. So we decided at that point it was time to take away the binkie, cold turkey.  We had talked about it for a while, and so I had a plan in place, but I expected a long struggle that would last night after night. So that Monday, I cut the nub off of AJ's binkie, and when it came time to go to bed, I gave it to him and said, "Sorry, Mommy broke your binkie."

AJ took the binkie, held it, and started laughing. He tried to put it in his mouth and when it fell out he picked it up and laughed even more. He went to bed holding it and laughing. It did take him a few hours to settle down, but he never cried until he was really tired. He just laughed the whole time!  The second night, he did the same, but it only took an extra hour to get him to bed. After that, we gave it to him every night for the week and he held it, and by Saturday night we didn't even give it to him and he didn't ask for it.

Sometimes the things we think are going to be so hard end up not being so difficult, and the things we think will be easy end up being something we struggle with for a long time. Hearing the words "autism" from an official diagnosing team were much harder than I thought it would be, as we had suspected it for so long, but to hear the words just seemed so final--that our lives had changed forever and AJ would never be the child we had thought he would be. It has taken a long time for me to realize that this happens to all parents--for some, it just happens much later in life when the child chooses a different career path than the one you imagined for them, or comes home covered in tattoos, or a child has an illness or disability later in life. We all have to change our expectations for our child, and we have to work through that transition.

This past week our son had to go under anesthesia for the first time for oral surgery and a BAER ear test. I was very concerned about how my son would handle such a procedure, especially the anesthesia, not understanding what was going on. But when we got to Children's very early on a Friday morning, he was all right. He fussed a little when the bracelet was put on but then got over it. He even liked changing into a johnny and every time someone came in the room wearing scrubs he said, "Doctor." When it came time to go back to begin, he took his Papa's hand and went, and did just fine.  Waking up, he was groggy and a little fussy, but he didn't scream or cry much. And soon after we were home, he seemed back to his normal self.  Even with having two teeth pulled, by the next day he was ready to eat and was very happy.

As parents and caregivers, sometimes the things we think will be so hard end up not being more than a bump in the road, if that. And sometimes the things we think will be easy end up being so hard. Remember that you don't travel this journey alone. We are all in this together. Whether it is the IEP process, or transitioning to a new school or program, or a medical procedure that is coming up, be sure to reach out and connect. We are in this together.

Justify Decisions

by Kim Weaver

Why do we feel the need as parents to justify our decisions to others?  I know I have done it when speaking of the things I do with my daughter.  But why?  I admit it, I let my daughter play on her iPad without any interaction from me.  I let her eat processed meat and non-organic fruit.  I let her drink pop, let her wear the same clothes multiple days in a row and I don’t brush her hair every day.  Even writing this for everyone to see, I feel like I need to put disclaimers about why I do these things to make it clear I am still a good mom.  At least I think I’m a good mom and I’m doing the best I can. 

I have had other parents talk about things and then add comments after explaining the situation.  Example:  “My son watches tv sometimes, but I make sure it’s educational and do try to limit the amount of time he watches.”  I just replied that I completely understand and I let my daughter watch tv also.  The parent did not need to justify why, but it makes me wonder what makes us do that? 

I am still trying very hard to pick the battles I wish to fight when it comes to parenting.  Is it really that big of a deal if she wears non-matching clothes to the store?  Is it that bad when I bring her iPad and headphones to a restaurant so my husband and I can have a quiet meal?  As a special needs mom, we get judged quite often with looks and glares while out in public.  We even get judged verbally by snide comments or people speaking angrily at our children.  We as parents need to be more confident that what we are doing is ok.  We know our kids better than anyone else in the world.  We should be able to make a choice and not have to justify to anyone about why we make that decision. 

I want to be stronger in my choices and simply state what I do.  “I let my daughter bounce on my bed.”  Why?  Because.

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.