Tuesday, September 05, 2006

So here we are sitting in front of the elementary school at 9 am March 2002. My son is looking at the school saying 'No Mommy" and I am saying It will be fun, lets go. He clings to me like a sea barnacle. We open the doors and we only have to take a few steps in and a few to the right to be in the speech room. In the beginning that walk seemed like miles. Riley screaming, the ST smiling talking softly as she peeled him off of me, then me making a quick exit out the door, closing it behind me and standing next to the wall with my ear pressed against it waiting for the deluge of tears to stop. At first feeling heartbroken that I was having to do this, but I knew I had no choice and the comforting words of encouragement from teachers who drifted by were also a great help.The genius of his ST would soon show through. She was always ready with an arsenal of distractions when we arrived. Bubbles to blow, balls to bounce,mirrors to make funny faces in and every toy and learning aid ever manufactured. Soon the crying went from 5 minutes , to 3 to one to none and he actually began to walk in the school on his own and I actually would retreat to my car to read for the h0ur.
I was learning as well.That his aversion to anything cold, slick or mushy were classic signs of oral sensory issues. That his drooling like Niagara Falls was a sign as well. His tendency to chew on his shirt collar or sleeve or a hard plastic toy also sensory issues. That he could not drink out of a straw or blow bubbles also sensory and speech related. All minor seemingly inconsequential things in life, they never caused any concern but added up to have big meaning.His hyperallertness to sounds loud or soft, sensory.His extreme dislike of any place crowded , confined or loud and low lit also sensory.
It was easy for us to gloss over these quirks because he was really as easy child. He ate and slept great. He was easy going and loved to play.He was very loving and affectionate. He was great at entertaining himself and had a great imagination. He loved the outdoors and was generally very well behaved.You only had to tell him No about something once and he got it.We knew we had it pretty good. In fact he was such a great child that a year after bringing him home, we ate our words about having just one and ventured back to Russia for our daughter.
Speech went great, he loved going ,everyone that he came in contact with treated him as a VIP and we began to see great progress.They were great at not only helping my son but also very thorough in making sure we knew the what and why's of the lessons and what we should be doing at home to encourage and support their efforts.In this I became an overachiever. Our house became speech and sensory central , every opportunity for learning and growth taken, and I strongly believe that you must learn all you can about language acquisition and the steps and become the at home therapist.Bribery works well to.
You also must cultivate patience, humor and a laisser faire attitude when it comes to your child and those around him in public whose curiosity or rude stares try and intrude into your world.It does become much easier and I am pretty oblivious to it.I have never tried to hide or secret away his issues or differences. Never been embarrassed or self conscious and neither is he. We take him everywhere and do everything. He has probably traveled more and experienced a broader range of places and things than most any other kid around. I know what an amazing ,unique ,smart and imaginative kid he is , how the everyday average normal part of him is so much larger and more present than the other stuff. He is just a normal 7 year old boy who loves airplanes, country music and playing the drums.Always says please and Thank you,Can shoot a mean game of basketball and hit a baseball over the house and can swim like a fish. He wants everyone but Mom to kiss him on the head(future girlfriends take note), won't eat rice, mashed potatoes or mac and cheese-all too squishy, may carry on an oddly formatted conversation with you or sing every word to the latest Kenny Chesney song. Is a great mimic of sounds and animals and is our car safety officer, making everyone has seatbelts fastened and will remind you when to turn on the turn signal.
There are moments that I am very afraid about his future-will he find a job or fall in love. Who will look after him when we are gone and how will his adolescent and teenage years transpire.
But then I look around at this village that has formed around him already. These friends and family members that love him. His teachers and therapists that are encouraging and hopeful about his progress.They have shown me that he can have a great future and they are helping him and us learn the life skills for ,well, for life.
I do not know where we would be today without our local public elementary school. Riley had attended since he was three , all year round. They so prepared him and us for kindergarten and welcomed him with open arms and a plan fitted just to him.They not only teach him academics and sometimes in inventive ways to match his learning style but they also put great effort in teaching him social skills which is just as important for a child that it does not evolve naturally. They believe in him as much as we do and it is evident every day when he runs happily to the school bus and equally on those days that things do not go so well. I am so happy that we gave our school and our community the chance to get to know our son, to surround him with acceptance and love and to be there for him forever if need be.A private school or private therapist may be able to give him a little more but probably not.He continues to amaze us everyday. I know a private school or Private therapy outside our community could not give the full spectrum of learning experiences, peer interaction and the teamwork feeling of being a card carrying member of our little village of Springville. You can't buy that kind of learning ,compassion and interest in your child. It is priceless.
The last few years my guiding light has been his speech teacher ,who is also his IEP manager. Vikki Rodgers. Please do not try and hire her away. I can say that my son has had a love affair with her and would be content to spend his entire days in her room. Her sense of humor and knowing when to be firm is something we have all come to rely on. Her openness and honestly with us has opened doors we never even knew existed. Her willingness to be bombarded by my thoughts, concerns , observations , suggestions and more than a little bit of overprotection of Prince Riley.She not only listens, she has the courage to tell me when I am being overly concerned,need to see how things go, or yes even, WRONG. But just as often she shares my concern, agrees with my ideas and the MOST important thing to a parent who is advocating for their special child is that she implements changes or ideas immediantly. That instills in us the confidence that she does care for our son and we in turn trust her judgement.Even her current maternity leave did not allow her to escape being our go to girl and connection at school.Sorry, Ms.Bikki. This is a most crucial relationship you need to have with whatever school your special child attends. It does not have to be a private school, a wealthy school or big school. The building, operating budget or aesthetics are not what counts. It is the people that teach there, the attitude they have about what they do everyday and their willingness to compensate, adapt,try new things and learn new approaches when it comes to your child. Our haven of education and the place where my son is learning to fly is in a small Alabama town where just about all the teachers know all the kids, we still have the homecoming parade and Christmas parade on Main Street and we just got our first traffic signal a few months ago. The therapy and lessons he is receiving here is first rate. And that is not just my opinion.
A few months ago we had him evaluated at the Sparks Clinic, the International Civitan Research Center for Children with disabilities. He was tested over the course of three days in Speech, Language, Hearing, Psychology,Vision,Occupational Therapy, Comprehension,Social skills,Autism screening, Choreographed observations. The went over his history from birth and every moment in between. He was diagnosed as PDD, Pervasive Developmental Delay, which is a milder autism spectrum disorder. We were thrilled. Some parents may have been devastated at the news, the fear of the LABEL. Not us, because I knew those three letters could be the key in his future education and opportunities . But the best thing they told us that his progress was amazing and for us to keep doing what we were doing in terms of therapy and school. They were amazed at what our small school was providing and accomplishing. They said all families should be so lucky to have such a great elementary school behind them as we did.My son still has a long way to go but it feels great to know that we are on the right road and traveling at a good speed. Fast enough to enjoy the ride, but not so fast that we are missing things along the way. That is one gift our son gives us each day, meeting people we never would have and learning to slow down and enjoy all that life has to offer.Something that far too many people miss in their fast paced,competitive, get to the top first ,be the best way of life that they are living and teaching their children to live also.I wish all parents could learn this lesson. That the very best things in life to savor are not the big achievements or awards but all those little, often missed things that happen hundreds of times a day that add up greater in number and richness than those events that instigate bragging rights.
We feel very rich and blessed in our little village ,in our little corner of the south.


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