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.

Teaming up with another special needs Dad

The majority of the blogs out there that focus on parenting and raising special needs kids in particular are written by moms.  I have met a few other fathers of special needs kids through my son's school and also networking on Twitter.  One dad in particular, Stuart Duncan (Twitter: @autismfather) has a pretty cool and informative site dedicated to his family's journey with autism.  I have a link here on my page that will direct you to his site (Check out the Blog List on the right).  Once he sent out a message looking for guest writers, I decided I would like to contribute.  Please click here to read my first post...

Battling the 'normal' mindset

I've always been bothered by the expression, "Things are back to normal", mostly because of the last word in the sentence (I won't use the word but for the sake of this post I'll make an exception).  Also I'm not sure but it seems it could be a substitute for "I like my routine and while at times it may vary, please don't do or say anything that calls my perception of normalcy into question".  I suppose my stance comes from cultural relativity more than anything.  It is important to respect other practices and beliefs because with all the different languages and religions around the world you should keep in mind that what you do or say may look weird to someone raised under another set of ideals.

How does this relate to autism?  Well, some of the stuff my son does would cause many to start the "that's weird" or "that's not normal" rants.  I believe that those phrases are helping to reinforce discriminatory views across the board.  It is ridiculous to think that what you say or do is 'normal' and when someone either acts or speaks differently than they are 'abnormal' or 'weird'.

This causes families dealing with developmental delays such as autism quite a lot of stress and worrying.  Not only are we trying to teach our children skills so they can catch up to their peers but we are also forced to deal with people who think our kids shouldn't even be in the same class as their son or daughter.  As if just by being in the room, a child with autism is going to cause other students to begin to struggle academically and socially.   This is something that causes me a lot of anguish.  No one really knows what goes on behind the scenes.  I don't know how much work you or anyone else puts in to help their child.  I cannot know because I'm not there.    As far as my son is concerned, nobody was around to see all the work he has put in to learn limited language skills and how to use the bathroom.  What about how long and hard he, his parents and his therapists worked just to get him to sit at a table and focus on the task at hand?  As far as we're concerned we aren't trying to normalize anyone.  In fact we are lucky to have a special person in our lives and we are helping guide our son on his journey as he acquires skills needed to make his life as fulfilling as possible.  I would also like to add that Diego is funny, sweet, and overall an awesome boy!  So you can keep your 'normal' tag, we don't want or need it.

Picture this

I've written about it before and here are two examples...what is going through his mind?  He has always loved bubbles and this bubble exhibit at a children's museum we visited was a dream come true for him!