Tuesday, May 13, 2008

DNA Brothers...(Journal #2)

"Minnesota Autism Society~4th Annual Steps of Hope Walk"
(February 2008)
Thank you to those that sponsored our family in raising $1,500 towards the cause!

It has been too many months since my last post. We have found that our family has taken a few twists during that period which have not afforded me the time nor the energy to write. Of the many twists, one in particular has made it difficult to write. Not because the situation is difficult to write about, but because of some guilt. I started writing "Sam I Am" as a way to process what we were experiencing with Autism as a family, and as a way to share with family and friends so that they would understand Sam a little better. Even from the blogs inception, I felt a little guilty only writing about one of our children, thinking someday that our oldest son Zach, may wonder why I only felt inspired to write about Sam. Both of our boys teach us and inspire us everyday. Both of our boys are special.

Sam~ Many of you know him if you have followed Sam I Am over the last 3 years. Sam is diagnosed with classic Autism. He is now 6 and will be finishing kindergarten. I don't know anyone who has worked so hard to get to where he is today. Since my last post in the fall, I haven't reported how kindergarten has been. Sam is mainstreamed in a class with 19 other children. When he is in the classroom, he has a full time paraprofessional assigned to him. She has been so wonderful for Sam, and he has really connected with her. Sam is pulled out to a special education teacher each day, as well as for speech therapy and occupational therapy. He has not made progress this year as hoped, of which the reason we called for an IEP meeting in early March. Everyone at the table agreed that Sam was not progressing. He happened to be up for his 3 year assessment, so the month of March was spent completing that.

It was decided by the team, that Sam will spend much of his time "out of the mainstream" and in his special education class. He will participate in music, gym, crafts and social studies with his mainstream peers with the assitance of a para. Sam also qualified for ESY, which is Extended School Year. He will attend summer school 1 day a week throughout the summer.

Sam has made so much progress socially this past year, and it is our hope that academically he will too at his own pace and style.

So back to Zach. Where to begin with our little scientist. Zach has always been the opposite of Sam in so many ways....Zach spoke paragraphs by 18 months (unlike Sam who didn't speak until 3 years). He showed some delays in kindergarten and had the assitance of an occassional para support, but by 1st grade was sailing, and did so straight into the districts talented and gifted program. His reading and math scores have always been well above average, and by the end of 2nd grade he was reading at an 8th grade level (with most thanks to a father that reads with him every night since birth).

However, while Zach and Sam have always had many differences, there are many things that have been the same. Sensory issues, communication, rigidity, routines, insisting on sameness, and social skills. Zach can talk to you like no other. That is the challenge though...he will talk "to" you, but not with you. His reciprocal language is one we are constantly working on. He will tell you anything and everything about paragon falcons, and will do so for hours unless you give him boundaries.

This is where the social connections with family and friends starts to play. Many get annoyed or frustrated at his "scientific view and babble" on most everything. His attention to each detailed fact or figure makes it difficult for many to relate to him. He knows it also. He knows he struggles with understanding classmates and making friends. It breaks my heart for him. Zach doesn't read facial expressions and "according to his teachers" doesn't display it with his peers, which leads to lots of miscommunication. His literalness has led to many issues on the playground since 2nd grade. And to the biggest heartbreak for most parents, he has been bullied for the last couple years by those that have figured him out. Meaning, these particular classmates know how Zach interprets things literally, and enjoy egging him on.

So...here is where we are. Nothing new, just a new way of doing "kid" business with our two most precious gifts. Yes, as you have already guessed... Zach has Asperger's Syndrome. Yes we have known for years that there has always been "something" about Zach. The past couple years have had us working with him with great doctors through Children's Hospital in Minneapolis. But...while perhaps our hearts have always known the truth, we were looking for other diagnosis.......oh, he is ADHD (the teacher and counselor in me knew we could find an answer in medication and behavior modification), or maybe he is this, or this.......but what is truly wrong with Asperger's Syndrome? We have one on the Autism Spectrum, why not two now? We can do this...........but what we haven't been so sure of...is that can others do this. Can others embrace, accept and understand Zach as they have Sam? When we missed such a diagnosis until he was 10, how can we now educate others on the world of Zach? Awareness is everything. When we are aware of how we all interconnect, we are all greater for it.

For two years....Zach went to Sibshops (I wrote about at Sam I am) to learn about Autism and his little brother, to learn to accept and understand his brother, and to also adovcate for his brother. What Zach never knew then, nor did we, was that he was learning about himself during those times, and now our prayer is that he will advocate for himself also.

How do you tell a child that he has Asperger's Syndrome, after he has read and informed himself about Autism and his little brother? We did so with gentle love, the help of his doctor at Children's and with what else? FACTS, DATA and STATISTICS...the things he cherishes most. He was probably most excited to learn that his old day obsession of Pokemon was actually created by someone with Asperger's also!!! That was his excitement in it all.

Zach has this little thing with Sam when things are going well with the two of them. He tells Sam they are blood brothers, then they each spit in the palm of their hand and shake on it. The day we told Zach about the Asperger's, he then went to Sam and said, "We are now more than blood brothers, we are DNA brothers." Of course our Zach would look at it that way!!!

So yes, I am about to mix Buddha with Christianity in the following, but for me...it truly makes sense:

"What we think, we become" ~ Buddha
"Be devoted to one another in Brotherly Love" ~ Romans 12:10

Zach has always had a way with words for me. For him to understand his connection to his brother through DNA or through a deeper scientific level, for me as a mother of two boys on the autism spectrum, clarifies for me, that Zach really does understand his deep connection to his brother. For how we believe about ourselves, is often what we become. To "think" they are DNA brothers, is to believe they have a deeper connection or love that will last a lifetime.


Melissa H said...

FRIEND!!! I have missed you so! I'm sure that it was a myriad of emotions when you accepted that Zach has Asperger's. I always said that, if we had another child and they were on the spectrum, at least I would know what I was doing. And, so it goes. How wonderful that you now have a diagnosis for Zach so that his teachers will learn to work with his unique way of thinking and processing. How sad for all of us, as a society, that we all need some sort of label in order to acknowledge that we are all different in the first place!

Good to see you writing again.

LAA and Family said...

Nice picture of your family! My blog is also devoted mainly to my son with autism. He has consumed most of my time this past year so I guess that is why. Whether he knows about his diagnosis or not, I hope that Zach will always be proud of who he is!

New American Mom said...


Jenny McCarthy is a believer that the vaccines are a trigger. (Disclosure: Jenny and I went to high school together.)

I have been interested in Autism Spectrum since my son was born in 2004. As a Engineer, I have read a great deal of the research.

I wondering what your thoughts are on the vaccine schedule?

For Michael and Norah, I did decline the flu shot. For Claire (my 6 month old), I have switched to the alternate schedule to space the vaccines out over a longer span of time rather than the bunching of many vaccines at once.

The first benefit I noticed with Claire was that I could tell what vaccine caused a fever and which ones did not. It is more time intensive for me (more visits) but I felt tracking was important. In the bunch method, it is hard to gather data to say, which one causes the reaction because they are all at one.

I am a scientist by nature. My husband is one too. So, I appreciate your story on Zach.

I was curious on your thoughts on the vaccines and Jenny's advocacy message.

Best Regards
Jennifer DeJournett