Monday, June 29, 2009

Autism - A Small Victory

Well, we are 1 week out of school and I have already begun preparation for transitioning my son to summer school. It will begin in July, will not be held at his regular elementary school, and his special ed instructor and therapists are unfamiliar to him. To be honest, I have been preparing for summer since March. We have a six month lead time on most of what we request to ensure things run smoothly for my son. Issues can conveniently slip through the cracks if we are not on top of things daily. Appropriate lead and time management ensures accountability. I am confident that with the social story created, summer school pictures requested, and daily visits to the school playground, it will be enough to familiarize my son to his new surroundings and minimize his anxiety...or so I hope and pray.

Onto the requests we have made for fall. Again, we have been dealing with these requests since April 1 (PPT meeting). We have had limited success in getting any progress and my frustration was nearing monumental proportions. This is something I never want because my emotional side takes over and I feel like my credibility is lessened and brushed off as "just another emotional parent". I really hate it when I let the love and passion I have let loose because tears begin flying and I can't seem to stop....credibility lost. This is where I have been for months with the school.

The administration was sticking their heals in for 2 requests of ours: retain paraprofessional and teacher for consistency and educational progress. Note: we decided to retain our son in Kindergarten for another year to allow his social skills to develop and close the gap between his peers. We were told in no uncertain terms that our requests would not be honored because of school policy. In light of these "policies", I began requesting some major preparation and transition plans for my son: (1)new para train with the current person to understand my son's motivations and personality (2) this individual had to have special education training (3)I would have to meet with him/her and (4) a timeline prepared of how the school intended to handle the transition. All of this never happened. Frustration was mounting when I received a call from the school (on my son's last day) indicating that our requests will be granted for the coming year. Better late than never. Amazing!

It is one more victory for us and proof that if you advocate for your child, the school cannot ignore your pleas....even the emotional ones. I'm not sure why the change of heart. I have a feeling it was due to lack of planning and some thorns in their sides (us), but it really doesn't matter. What matters is that my baby is going to get what he needs and that is priceless to me. All will be forgiven if the school does right by my son. Thrilled doesn't even come close to what I am feeling.

For more information on advocating for you child, visit your local parent advocacy center. In Connecticut, the site is

Sunday, June 21, 2009

Autism - Sunflower

Dedicated to Miss Kathleen (xoxo)
The school year is at an end. I usually don't have trouble overextending myself in gratitude to the team of school personnel that have worked with my son. This year is a little different. My heart isn't in the same place as previous years and I struggle to find the right words (or any words for that matter) to express appreciation for their guidance. There hasn't been all that much. The team involvement was not what I had hoped for at the beginning of the year (see post from September's . I must emphasize that my distant feelings are not meant for all of my son's assistance (his paraprofessional and physical therapists are fabulous).

To the individuals who have dedicated themselves to my son and to me are, I have to thank you from the depths of my heart and soul. I leave you with a poem (or whatever you would like to call it as I am no poet) I wrote about our angel on top:
Radiant Sunflower
Roots tangled
Dirt unsettled
Struggles to break the barrier
Breaks through with unnoticeable difference
Additional water, sun, nurturing and love required
Inconvenient with an unfamiliar amazement
Greenery begin to show
Setbacks endured
Watch with anticipation
Watch with hope
Blossoming with its uniqueness
Bursting with beauty
Earning each petal, one by one
The core so strong
A sunflower emerges despite itself
Character created
Never defeated

Special education teachers, paraprofessionals, physical therapists, speech pathologists, occupational and social skill therapists, adapted physical education instructors and mainstream teachers working with inclusion:
Please keep your dedication to our children, try not to be afraid of becoming emotionally invested, stay true to what you know is right for the child and know how much you mean to us (the families). Thank You!

Saturday, June 13, 2009

Autism - The "BIG" Walk

In my need for creating memorable traditions, every year since my son was diagnosed, we raise money and go on (what my son calls) the "BIG" walk. It is a day of celebrating and support of our children who are on the spectrum for autism. There are many organizations for autism that have walk events throughout the year. For us, we participate in the Autism Speaks, Walk for Autism held at the Manhattanville college campus at the beginning of June.

The day is even more important because it usually is scheduled during the same week as my son's birthday. This year was no different. We all woke up bright and early and began with joyful, excited, and repetitive announcements from my son: "Today's the BIG walk, Mom?", "When are we going to the BIG walk, Mom?", "We will bring the wagon, Mom?" We all wear, the coveted, red t-shirts to show our comradery. Red also happens to be my son's favorite color. The weather was perfect as we wait for our family of team members to arrive at our house.

After packing up the cars, all the members of team RYEBREAD (a nickname we gave to our son at birth...he was as tiny as a Ryebread) loaded in. Upon arrival, my son took controls of the wagon handle and began pulling it up the hill to where all the walkers were congregating. It is quite an event. There was face painting for kids, tattos, bouncers, refreshment stands and an information tent where families can seek out resources. That tent in itself is probably lifesaving to many.

The horn blew and we were off walking in appreciation of all our family, friends, and acquaintences that so generously gave to our fund. It always is a bit emotional for me. I see such sparkle in my son's eyes and hope that everyone can see what I see. This is a child so eager to please, so gentle in mannerism, so impressionable yet makes the most impression on us all, fun loving with a sense of humor, truly a harmonious person... Do or can others see what I see?

Last thought - As we walked, we thought to bring my son's new bubble blower. It was one of the best things we did that day. Bubbles make children laugh and parents happy for the distraction. Has a bubble ever popped on your cheek? It can bring out the silliness in anyone.

It was a fun morning and another year with tradition...or some could say routine:)