Friday, January 25, 2008

Moms Rising- Parents Rising- Astoria Style

Hey, moms (and dads), if you are interested in, we're starting up a chapter soon. If you're a member of the meetup ASAH mom group, then it's on the calendar. If not, then email me and I'll give you the info. And if you just want some information, you can email me or go to I think that it's a good thing for all people with families to get together to be heard- to help make sure that politicians know what is important to us. Some of the momsrising campaigns are really important to me and to other families in Astoria that I know- better daycare and childcare, affordable homes, better schools, after school care, equal pay for equal work, and flexible work hours that let us get work done both at our paying jobs and in our non-paying jobs!

Wednesday, January 9, 2008

My fight.....My Inspiration....

I have wanted to post on the blog for months now, but it has been a struggle to articulate all the strong feelings and emotions that are harbored inside of me. I knew that if I write about my experiences and emotions it would serve three very important purposes. One would be personal in which I can simply "get out" all the feelings that I have been carrying on my shoulders. The second would be to let others know that if you are in my shoes too, you are not alone. Finally my purpose in writing is to grant people, if it only be a small amount, a glimpse of the reality of Autism from my perspective.

So hear I go. Michael was diagnosed with Pervasive Developmental Disorder (PDD) when he was 20 months old. He is now three years old. He has not actually been diagnosed with Autism. But, when explaining it to family, friends, etc. I say that he does have a mild form of Autism because many people do not understand what PDD is. At first I really could not truly acknowledge that Michael was on the spectrum as all of a sudden we were bombarded with all theses services for him through Early Intervention. At first I was in a fog as I now had to coordinate Speech, Occupational, Physical, and Special Instruction Therapies. But that is what I had to do and that kept me from having to truly acknowledge and accept this reality. Reflecting back, I then basically went in to a "fight mode". From my teaching experience I knew that special education services do not come without a fight, and I would fight for my son, because the same hopes and dreams I had for him did not all of a sudden become diminished because of this diagnosis.

Intrinsically, I am not a fighter. I have always been intimidated easily. But, as the first roadblocks came when having to transition from Early Intervention to CPSE (Commitee for Pre-School Special Education) and dealing with the NYC board of Education, I quickly transformed into the strong and determined advocate that I had no choice to be for my son. When phone calls were not returned I would call back relentlessly until I got someone on the phone that could help me, I would be demanding, and I would not accept anything less than what I thought Michael deserved. After fighting with the Board of Ed about evaluations, then visiting school, I was successful in my fight for my son. I got him into our first choice school. The one gift that Autism has granted me is that I am confident now that I can be a advocate, I can be a fighter.

So, at first I was in sort of a denial, then I focused all my energy on being my son's strong advocate, and now until the next battle (I guess) I find myself for the first time in a year and a half truly having to deal with this reality. I am accepting it now and I am letting myself feel the anger, frustration, sadness, and fear that has always been their. I love my son with all my heart and admire him for always rising up to challenges that life brings him that for other children are not so much of a challenge. I see how much he is progressing and how hard he works. I am marveled at how he can think of different ways to put his train tracks together as I observe his thinking process by taking pieces, looking at the shape, then looking at the structure, so that everything connects. I am so impressed by his great memory skills. He has memorized many of his favorite books! But, at the same time I have much anxiety about what the future holds for him. I see other children his age playing together and talking with each other about various things. Or simply asking each other to come and play or anticipating the arrival of a friend. That is a struggle for Michael. He has difficulty engaging is spontaneous open-ended conversations that come so naturally to most children and adults. I have cried to my husband many many times saying, "I just wish that Michael could play with other kids the right way"! Then I feel badly because I do not think any less of my son, I just so much want him to experience the fun and satisfaction that comes along with friendships. I am so proud of Michael and proud to be his Mother, but at the same time I am scared for him. Michael's teacher's like to say that Michael just learns differently. And yes, I do believe that and I have to accept that. My husband and I have had to accommodate and adapt our behaviors and outings to meet his needs and different ability in order for him to be successful. Some days we fail miserably and other days we relish in our success.

I read a story when I was in college, that having a child with a disability is like planning a trip to Italy, but instead you all of a sudden are sent to Holland. It is not that Holland is any less of a vacation then Italy, it is just different and not what you expected. I always keep this story in my head to help me to be strong when I am letting myself feel sorry for myself and angry that Autism has such a strong presence in our life. With all these strong emotions I have been experiencing for the last year and half, my love and devotion to my wonderful son will always surpass them in strength. Michael is an inspiration to me and I will always be thankful to him for giving me the strength to finally fight for what I believe in. I will never stop fighting and I will never give up hope.