Monday, August 31, 2009

Hello. My name is Susan and welcome to my blog! I've never had a blog before, and didn't really understand the point of one. But now that I'm working with other children with special needs, I decided to journal some of my experiences as well as impart some of my "wisdom" along the way.

Here's a little about me:

I have been married to my husband, Vince for almost 18 years now. He is my very best friend and someone I know I can turn to in crisis without being judged. He is quite often the sound mind in our family. I have a tendency to be more worried about things where my Vince can see it for what it is, and help me to not only except it, but find the best part of it.

We have two little boys: Anthony our 11-year-old and Gianni our 7-year-old. When Anthony was 2 years 9 months he was diagnosed with autism. I remember being numb walking through the Kaiser Permanente parking lot back to our car. I thought autism meant you couldn’t speak! That a person would just sit and spin! My son speaks very well! I soon realized that autism is a very wide spectrum made up of a lot of developmental issues. At that time Anthony could not take having people speak in unison. He would scream, hit, pull hair or butt his own head. He was extremely intrusive. It was not enough for Anthony to sit with a person. It was almost like he had to be inside of that person. He needed to get very close to their eyes to read what was in their heart. He lacked understanding of others’ feelings. If he didn’t feel the pain, you surely did not feel it either. He had no “turn-off” button. Sleep did not come for him in the evening. When he did finally get to sleep, he would wake up frequently in the night screaming and thrashing, and we would need to go in and calm him and get him back to sleep. Anthony would carry a bin of toys with him everywhere (literally everywhere). If any one of these toys was missing he would rage in a panic until the toy was found. We attempted to have him in 3 different preschools, but was kicked out of each one. The last one said that they handled children with his “undiagnosed” issues all the time, but they still sent him home. They took me to their office and suggested that he be tested by the school district which we did. We then took him to Kaiser Permanente where he was given is diagnosis of autism. From there we hooked up with the Regional Center who did their own testing and agreed with Kaiser Permanente’s diagnosis. The first thing we learned of was “respite”! A way to have a break, know that our son was in good hands with a person who would be patient with Anthony. At first Anthony would scream for hours when we were gone. But gradually he began to except it and even tell us on occasion to have a good time, albeit through tears. We then put Anthony in special day classes at Santa Clarita Elementary. This was a wonderful time for us as we began to grow as a family navigating the autism world. Anthony is now 11-years-old and is absolutely amazing. He has come very far. He still carries his bin of toys around with him, and keeps them on his bed when he sleeps. If a toy is lost now he will still panic, but tries his very best to keep it in check while we search for the toy. At this point in Anthony’s life, he struggles with friendships (being obsessive with an individual person), anxieties, focus and temper tantrums. But it should be noted that has come so far from even one year ago. He has an amazingly huge heart! He has concern for others when he feels he may have hurt them. He is developing a tremendous wit and has the most contagious laugh you will ever encounter! We can’t imagine life without this little person and feel we have learned so much from him!

Our 7-year-old Gianni was born on October 27, 2001. When we first conceived Gianni, we were very excited, but also secretly concerned. Would we have another child with autism? How would we handle having 2 children on the spectrum? It was so delightful to watch the 2 boys play together and to watch Anthony even act as big brother to his baby brother on occasion. We realized that at 3-years-old Gianni was to remain very neurotypical. Unlike his big brother, Gianni was always able to recover from disappointments or frustrations with such ease! He was navigating this world beautifully at such an early age. We found ourselves saying “so this is how other kids are!”. Gianni has always been very creative. One of his favorite activities is to sit with “Play-dough”. He can sit for hours creating things with “Play-dough” and then having his creations involved in very intense play with some of the funniest sounds! He’s very passionate in all his play. He plays very hard. We are forever having to collect all of the families blankets back out of the playroom at the end of the day after Gianni has used them all to build his elaborate forts! We will hear him frequently up in the playroom engaged in very intensive battles with his toys. It’s the best sound to hear. Sometimes my husband and I will just be laughing downstairs as we listen. Gianni also loves “dress up”. He has many costumes and has even created is own “nerdy” character whom he’s named “Periwinkle”. My husband and I were amazed at his detail both with his costuming and the personality he gave this character. He has become a huge fan of magic after watching his daddy perform. He has recently auditioned for the Talent Show at Quartz Hill Elementary and was accepted to participate in the show. It seems to us that, at an early age, Gianni possesses a very good understanding of comedic timing. He may end up being in theatre one day. He and daddy are currently building a Go-Kart and just having an amazing time working together.

Both our boys have their own unique and very special relationship with their father. Vince calls one “buddy” and the other “pal”, and they relish their nicknames and their place in their dad’s heart. I love seeing them together, and feel very blessed every time Vince says “hey, get the boys ready, I’ll be home soon. We’re going to go here or there”. To have a father for my children who wants to be part of their lives without being directed to do so, is huge to me!

Like any family’s, our day can be intensely crazy. It can be full of major disappointments and helping each other through anger or sadness. Or it can be very funny with laughter and rolling around on the floor. The key though is that at the end of the day, we know we’ll have our bedtime stories, songs and what daddy has dubbed “cheer” time. “Cheer” time is where they each get a little cup of juice or water and they cheer to each other’s day. It used to be me who handled the bedtime routine, but it has slowly become a time for daddy and the boys to bond. At first I felt guilty for not being the one to do this. I’m their mom! I should be putting them down! Then I asked myself “Why”? Why can’t they get the same love and bonding from him as well? So I’ve backed off from those fears and just relish in listening from a distance. It isn’t that I can’t go in and be part of it, but I don’t want to take away from this time for them.

I could go on and on, and turn this into a book, but I’ll stop here. Who knows. Maybe someday I WILL write a book!

Check back with me from time to time. I'll be posting new adventures with Anthony as we navigate this amazing world of Autism. :o)

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