Thursday, April 23, 2009
We have been going through a dark time with Zachman. As we prepare for the tween years, I think that is what is beginning to complicate things more for our Asperger's journey together. I am sure the hormones effect things, but so does the distinction of where Zach really is socially among his peers. His frustrations add to his behaviors at home. It all makes for a challenging mix many days.
I am out of all of my tricks in the hat for some of our challenges that we have at times. I have tried placing the different hats from my life on, to figure out what we need to do. The teacher hat is low on modifications at home, the mom hat is feeling a tad bit weary, but what hat have I been forgetting about?
How could I forget? My faith hat is what must be tied on tight to my big fat head right now. God sent me a sign from a friend today, who revealed this book by another Laura I have followed in the blogosphere over time. I didn't see it on my own, but just as my candle starts to dim, just as I am needing that second wind....I am drawn to read yet another Autism book that brings hope...JUST IN TIME.
A Twist of Faith
Just when it seems we lose our way, we are blessed with friendships who reveal new inspirations to keep us going. For me it comes in the way of a book to motivate and quit feeling sorry for myself. It truly amazes me how God sends things our way. For me it felt like...JUST IN TIME...but for God we always know...that in fact...it is in HIS TIME.
"Your heavenly Father already knows all your needs, and he will give you all you need from day to day if you live for him and make the Kingdom of God your primary concern."~Matthew 6:32-33
Tuesday, February 17, 2009
We will be walking as a family, for our 3rd year, in the Annual "Steps of Hope" walk on March 1st. This walk benefits individuals, their families, and agencies working with those with Autism.
As many of you know, Samuel was diagnosed educationally and medically with Autism at 3 years old. Sam will be 7 by the time we participate in the walk. The four years have gone by fast, and with lots of hard work from Sam at his speech and occupational therapies and school. Zach is also on the Autism Spectrum, with a disorder called Asperger's Syndrome. He was diagnosed much later, which is very typical for Asperger's. While both boys have very unique and different challenges than one another, together they inspire us.
The Autism Society of Minnesota (AuSM) sponsors this event. AuSM will use proceeds from the Steps of Hope to continue efforts in offering information and support to individuals, families and staff in a wide variety of ways. AuSM offers educational programs, including the Discovery Series, for parents of children recently diagnosed with Autism, and weekly workshops and support groups. Through the Steps of Hope Support Grant program, Minnesota families, schools and service providers can request financial help to purchase goods and services they need as they work with individuals with Autism. Our school district, whom Samuel receives special education services from, has received this grant in the past. AuSM also donates a portion of the proceeds to fund national research efforts.
We thank you for considering. If you wish to sponsor us just click below:
Friday, December 5, 2008
I know that many of us in the Autism Community already are aware of the "sensory friendly films" that are now being held in theatres, but am excited to share a local one for those of us in the Twin Cities. Below is a copy of an email from our local Autism Society Chapter...Enjoy, Bolt is a great movie, but lots of action and sound, so it is a perfect one to make "sensory friendly"!
Subject: Sensory Friendly Film ³Bolt² Tomorrow!
Lights will be turned up!
Sound will be turned down!
Bring your own snacks!
Silence is not golden!
Join AuSM and AMC Entertainment for ³Bolt², part of the Sensory-Friendly
Saturday, December 6 , 2008
10:00 am; doors open at 9:30
Tickets are $5 per person.
AuSM, ASA and AMC Entertainment have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment. In order to provide a more accepting and comfortable setting for this unique audience, the movie auditoriums will have their lights brought up and the sound turned down, families will be able to bring in their own gluten-free, casein-free snacks, and no previews or advertisements will be shown before the movie. Additionally, audience members are welcome to get up and dance, walk, shout or sing - in other words, AMC¹s ³Silence is Golden®² policy will not be
enforced unless the safety of the audience is questioned. Sensory-friendly Films will be shown the first Saturday of each month at AMC
Visit www.ausm.org for more information!
A TWIST OF FAITH
In the same manner as a "sensory friendly film", God gives us those "sensory friendly moments" whenever we need them. The "light is turned up" and on when we look to Him. The noisy "sound is turned down" from the world when we pray to Him. And...even though we can "bring our own snacks", bring our own joys, and bring our own sorrows...He always has a place set for us at His table. I am forever thankful for gentle times where our littles ones are afforded less anxiety.
4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (NIV)
Wednesday, July 2, 2008
It was a little boy named Daniel Militello. We quickly found out the little boy was 9, as Zach hit play right where the boy started to perform. The judges asked a few questions, but there was something all too familiar about the way he spoke. The tone, the expression, the manner in which he delivered his answer to someone he did not know sounded like something I knew. We listened to the adorable performance.
When it was done, the judges put him through to Vegas. I asked Zach to rewind it to the part before his performance, because I had a sense that they did a bio of him or that there was more to his story than his beautiful voice. Sure enough, my sense was right. Zach and I just looked at each other. Zach reminded me that Sam sang all the time too before he spoke words that we could understand, at about 3 years of age also.
We didn't say much more after that. Zach went upstairs to wait for me to do our bedtime routine, and I sat on the couch, confirmed by my sense of who the little boy was, and rewarded with the sense that Daniel would show America his gift. We all have hero's. My boys and husband are mine. Daniel is one also, because our family knows how much hard work goes into doing what Daniel did last night. We know the hours, years, of speech therapy, occupational therapy, home therapy, special education and others to get our children to do what comes naturally to most. Daniel made it look natural, sweet and innocent. A hero he is, for what it took to go out there and perform, and we are all a little better, brighter, aware and thankful for that.
This clip above includes information about Daniel and then his performance.
This clip above is only the performance clip, but clearer from NBC.
A TWIST OF FAITH
Sometimes we have a sense about things. I had an incredible sense that this talented little boy was more than an adorable 9 year old. I had a sense that Autism was a part of the equation. We have that sense because of our previous knowledge or experience. Sometimes, I think we give credit to ourselves, because of our knowledge, instead of giving credit to the one who knows us best. For when we let our life go, and be led by God...our sense of purpose and who we are will become even more clearer. With a sense of clarity, then our true hero is revealed in God. With God as my ultimate hero, I thank Him for quiet times alone with each of my boys, I thank him for shared interests that I am able to have with each child. Even if Zach and I love "couch potato" shows and time together, I can give thanks for the moments we share.
For he has rescued us from the dominion of darkness and brought us into the kingdom of the Son he loves - Col 1:13
Tuesday, May 13, 2008
"Minnesota Autism Society~4th Annual Steps of Hope Walk"
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!!!
A TWIST OF FAITH
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.
Saturday, April 5, 2008
I thank you for the many friends and networks I have made the last few years on Sam I Am. I pray peace and blessings on all of those contacts and for the messages they share in the awareness of Autism.
As I begin my new blog, I do so during Autism Awareness month. I just pray that with all of the media coverage, that people see our children not as burdens, but as blessings.
I pray that my words on this new blog be in your honor and glory, as a way to reveal the blessings we have each day with the children you so richly blessed us with. Amen.