Wit and Wisdom compilation

Today, September 20, 2011, Wit and Wisdom from the Parents of Special Needs Kids is being released.  This book is a compilation of stories written by parents that are dedicated to making a difference, and I am one of the authors featured in the publication.  As many of you know, my older son Diego was diagnosed with autism in 2008 and I am committed to sharing our story to bring about change.  By that I mean a shift in how we both perceive and act towards people that posses a different way of thinking.  The other contributors to this anthology are special needs parents just like me, relating their experiences of life with their exceptional children.  The book is available for purchase at Amazon.com, and I invite you to come discover the world of special needs parents and support our cause by purchasing a copy.  Click here or on the link provided on the right side of this page and you will be directed to the page at Amazon.

When I was originally invited to participate in this project, there were a few ideas I was kicking around, trying to decide which particular topic I wanted to discuss.  A few weeks later, the decision was made for me.  We had just attended a meeting to discuss Diego’s placement for kindergarten for the upcoming school year.  During our meeting, the education official (who was actually a school psychologist) made some very negative comments, leaving me to wonder how someone working in that capacity could know so little about autism.  I left that meeting saddened by the way he spoke about Diego’s future but determined not to dwell on the negativity.  Later that same day I decided that my entry in the book would be about our encounter that morning.  That story and everything else I write is intended to foster hope for the future by slowly chipping away at what seems to be a mountain of ignorance that exists in regard to intellectual disabilities and autism in particular.

Moving forward

In a little more than two weeks Diego will begin his kindergarten program, the culmination of a tumultuous Turning 5 process that was anything but smooth.  Those issues, having finally been resolved are for another story.  Here I want to mark the momentous occasion by sharing a few photos of our son from this past weekend.  I was standing behind him as he started to run through the sprinklers at the park.  I quickly grabbed my phone to get some action shots as I felt they perfectly captured our situation.  Here is Diego, plowing ahead despite everything that may try and hold him back.  Although he craves routine, he has just enough of an adventurous streak in him to try something new.  Plus he loves the water!  

I continue to marvel at his progress and more importantly his potential.  I know he possesses all the pre-academic skills he will need for the upcoming school year and we will closely monitor the new school, teachers and therapists to ensure he gets the type of help he needs.  For now, we will enjoy the few weeks he has before school starts and try to convince ourselves we are not nervous about sending the little guy off to kindergarten…

    

Graduating from preschool

In just a few days Diego will finish his two year preschool program.  That in itself is a major accomplishment for our son, a sweet little boy that struggled to sit still and focus on tasks and made requests using one-word approximations and hand gestures.  Now with two years of preschool we have witnessed so many positive changes and have marveled at his ability to use language more consistently.  As I look back to the few months that preceded his enrollment in preschool, I remember just how nervous we were about sending him.  When originally touring schools in the spring and summer of 2009, the program we ended up choosing for him stood out because of the staff.  We felt welcome right from the start.  Despite our anxiety about how he would handle the separation from us during the day, we felt Diego would receive excellent care and that definitely turned out to be true.  We will be forever grateful to his teacher, aides and therapists for all their hard work.

As an example of just how much progress he has made, I’m going to include the following story:

Not too long ago I used to wonder when Diego would start calling me by name.  Would he use “Dad” or “Daddy”?  Perhaps even “Papá”.  I knew whatever he decided would be fine by me and since he turned 5 this year I figured it was only a matter of time before he began to use one of them.  Sure enough, one afternoon at the end of April we were getting ready to leave for music class and Diego said “Daddy” for the first time without prompting!  He wanted me to hurry up and put my shoes on so we could leave.  I know I’ll never forget that moment, I ran up and gave him a high five and then started hugging him.  I was beaming with joy the rest of the day.  It took five years but that feeling I had was more than worth the wait. 

Special needs preschool

There are some schools out there that are making a difference in the lives of special needs kids and their families. Our son is in preschool and while I know there may be classes in the future that are not as helpful and accommodating as the one he is in now, I wanted to illustrate how dedicated the staff has been with Diego and our family.

I have a page up over at Examiner and click here to read about his school.

Preparing for the IEP

We are currently preparing for an IEP meeting.  Our son will be moving on to Kindergarten in the fall and transitioning out of the preschool special needs program and into a whole new system.  Naturally I am nervous about the process since this will mean a larger school, new teachers and a complete change in his routine.  Diego has autism and for the foreseeable future will require a separate, special education class to meet his needs.   I don’t feel comfortable with professional people who do not really know my son making decisions that will be so important to his educational, emotional and social development.  Therefore I am preparing for the meeting by becoming familiar with special needs education, my son’s rights and the new program he will become a part of in the near future. 

I felt it would be a good idea to put my thoughts down in an open letter to the board of education officials that will be helping to make the decision on his school placement and the amount and types of therapies he will receive next school year.

To Whom It May Concern:

I realize that with the number of students in the area set to receive special education related services that it can be easy to view our son as just another case number.  While the progress reports, last year’s IEP and the new evaluations you have in his file are very good indicators of Diego’s skills and his progress to this point, we feel that it is our input as his parents that will most likely fill the gaps and answer any questions as to the services he would benefit the most from throughout the upcoming school year.  The first instinct for you as the professionals will be to point out that we are unable to objectively view our son’s case because of our strong emotional ties to his education and how every parent that advocates for their child cannot reasonably expect to get everything they want from their school system.  That is a fair argument but we as his parents know Diego better than anyone else in the world.  We have watched him struggle with his speech, sensory issues and intense fears.  Since we have seen the tactics and therapies that have worked well throughout his Early Intervention and preschool years, it is vital that we be treated as equal partners in the design of his Kindergarten program that begins in September of 2011.  At the upcoming IEP meeting I know we cannot fully express just how much we have been through with Diego up to this point in his life but we are looking forward to working with you to help mold his educational foundation.  If even a fraction of our love, commitment and hope for Diego’s continued progress shows through when we meet then I trust we will be able to come to an agreement to create the plan that benefits our son and ensures his continued success for the future.

Focusing on our son's health

Today I am a guest blogger over at "I'm Just That Way and That's Just Me", a wonderful blog edited by another special needs parent, Dani G.  She is the mother of a sweet little girl who, like my son, has autism...

Even though I will remember 2010 for progress that Diego has made, I will also remember some scary moments, hospital visits and ear infections.  In order to move forward and focus on helping him, I wanted to take the time to reflect on some of the concerns and tough moments of this past year.  We know 2011 will be bigger and better! Please click here to read my post...

Emotional reactions to autism

I have always held on to the belief that you can tell a lot about a person by how they respond to adversity. I used to be able to say that I work well under pressure and was able to remain calm when presented with different challenges throughout my life.  That was in the past though, before I was met with a far greater challenge and all of that toughness started to go out the window when confronted with autism.  Now if you see me, you may notice I tend to walk with my head down or seem to have a distant look in my eyes.  These are both sure indications that my thoughts are elsewhere.  I often have trouble focusing on something when I know my son is sick or having a hard time adjusting to a change in his schedule. 

When I watched my older son struggle through his acid reflux problems and crying fits as a baby, a part of me was affected in a way I didn’t know possible.  He just couldn’t get comfortable.  That was only the beginning.  Then as he grew older we noticed his lack of speech along with the extreme sensory issues. All of this was accompanied by tantrums.  I don’t know of a single day the past four and a half years where there wasn’t something to worry over or obsess about.  From the illnesses, doctor appointments and evaluations to crying fits, tantrums and frustration for all involved, I now have a hard time imagining a time or a place where autism was not in my life or a part of my everyday thinking.

I’ve discussed this before and I will reiterate the same idea again, what happens when you become so involved with autism and helping your child that you have a hard time connecting with others that are not affected?  Is that something that other parents of children on the spectrum are concerned with?  Does that make me a bad son, brother or husband if I fail to connect with family because I am too focused on special needs?
 
As a special needs parent I know there are people out there who think less of my son and feel the need to remind others that they do not approve of certain behaviors associated with autism. They may even label him different, call him slow or see his disability above all else.  Seeing and experiencing these type of discriminatory actions is something that causes me a lot of sadness and frustration. When it happens I sometimes feel like I got hit with a sucker punch and the wind has been knocked out of me.  I am unable to focus on anything and in that moment I struggle to try and find some way to channel that anger into something positive.  I just sit there and wonder why is it so hard for special needs parents and families to find compassion and patience from others.

My experience these past four years as a father of a child on the spectrum has done something rather unexpected.  It has completely destroyed the wall I had built around my feelings.  I now allow myself to experience as well as show others a full range of emotions and I have moved past the notion that I should show indifference or stoicism.  Going forward as we continue to advocate on our son's behalf we will be faced with a whole new set of challenges.  We will be prepared for some but not all of life's adventures.  I will run through a gauntlet of emotions and for the first time in a very long time it doesn't bother me who knows it.