Monday, March 1, 2010

3/1/10 - Happy March!!

Yeah, it's March, spring is just around the corner, yippee! Which also means that the boys birthday party is getting close. Can't believe they are going to be 4, what a whirlwind those 4 years have been! I can say with great happiness that we've come a long way (happy to be saying this a lot lately). This weekend was another testimonial. We had intended to visit my aunt for a weekend over the Christmas break, however, due to their kitchen remodel, we had to postpone the trip until this past weekend. It's been a very very long time since we had a weekend away as a family. It used to be exhausting to make it all happen and more work than it was worth. Even our attempted camping trips last summer were exhausting and the car ride to and from those places seemed to be my only respite. But we feel that Tyler's ability to cope with new enviornments and changes, sensory issues have improved so much that he was ready so we gave it a whirl this weekend and it went great. It was so nice to travel as a family to visit family again. There was a time when we struggled to get Tyler to eat one or two bites of food when we were out of a normal environmental. Now he's eating on his own at a new table/chairs with all new surroundings and doing great. We still do have to haul all of his "stuff" with us, including a toaster since he doesn't like his cereal or yogurt anymore, and he can't have eggs, we give him a lot of french toast sticks and waffles (all gfcf of course). So he has his own toaster to avoid cross contamination with gluten from regular bread/waffles.

Anyway, the weekend was great, my aunt has a piano so of course Tyler is in love with that. He did great hanging out with everyone, including people he didn't even know. Ben also had a great time. In fact, the boys went on their first snowmobile ride and had a great time. I'll post pictures soon.

We still struggle with our inability to get Ben into preschool. We couldn't afford it this year and even if we could afford it, we were unable to figure out a schedule that worked with our schedules and still accomodated Tyler's schedule. It broke my heart to have to choose one boy over the other. Ben gives me many reminders that he really needs to be in a school in a structured/learning environment and each time I feel a bit more guilty about not being able to get him what he needs. We do try to accomodate it with other actvities with peers such as enrolling him in soccer. I think we'll do swimming next. We also try to get him out and about each weekend to some sort of fun play place so he can interact with other kids, etc. Ben is definetly egocentric.... yet he has a heart of gold. Kinda of hard to explain. He's definetly the sensitive one in the family. he gets his heart broken easily but also knows how to melt your heart. Has a habit of saying "mom, you are cute!" when he's in trouble. Anyway, when he talks about any plans/future, he alwasy talks about his brother and including his brother in his halloween costume ideas, the fact that he wants us to all stay home toether every day and grandma can go to work for us, all those things he alwasy says mommy, daddy, and my brother. They don't play often but I really think Ben is starting to get that brotherly "protection" feeling and also beginning to understand more about Tyler's disability. Anyway as much as Ben's sensitivity can be somewhat irritating, I find that Tyler is pretty lucky to have a brother with a heart of gold. Which brings me to an article I wanted to share about the burden siblings bear in regards to autism. Carrie always told me that one day ben would be Tyler's best therapist. I think she may be right. Ben's definetly a lover.. not sure there is any fighter in that kid:) So I think the cards were played right.. Tyler needs to fight with everything he has to overcome autism and Ben needs to love and have more compassion than most siblings to accept his brother with special needs. Oh how I love my babies!

Ok, so here's the artcile i wanted to share about all of it:

A few months ago, I took my sons to buy shoes. Nate is 14 and autistic. Joey is 8 and "typical." And I'm the parent — most of the time. Before we got to the store, Joey said to me, "If Nate has a tantrum, I can handle him. You just focus on buying shoes. I'm better at handling tantrums than you. Sometimes you just yell and it makes things worse. No offense."

None taken. He's absolutely right.

The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings. (See six tips for traveling with an autistic child.)

As their parents, there's a lot we can do to help. For starters, we can educate them early on, by explaining their sibling's disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn't have to be "thought of as being geared only to the involved child," Melmed says. In his office, Melmed reassures siblings that "other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common." He also instructs parents to reaffirm that message at home. "Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal," he says.

A great way for kids to feel "normal" is to meet other siblings of autistic children, which they can do at sibling workshops. At the Kennedy Krieger Institute for children with developmental disabilities in Baltimore, social worker Mary Snyder-Vogel runs a program called Sibshops. "The workshops give these kids the opportunity to realize they're not alone," Snyder-Vogel says. "[We play] a lot of games that help them interact and problem-solve with peers. Kids don't even realize they're getting support."

At a recent Sibfun workshop at the Jewish Community Center on Manhattan's Upper West Side, therapists used puppet shows to illustrate issues that are common among siblings of special-needs kids. When asked what they thought the puppets were feeling, the children in the audience needed no prompting, immediately shouting out words like sad, disappointed and jealous.

Siblings will commonly have negative feelings — some might never connect or want to connect with their autistic siblings — but the good news is that typical siblings often turn out to be more compassionate and caring than average. "These siblings have seen what it's like to have a hard time in life," says Sandra Harris, executive director of Rutgers University's Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families, and author of Siblings of Children with Autism: A Guide for Families (Woodbine House).

There are many other, more specific challenges that affect siblings of special-needs kids — and many of them apply to sibling relationships of every kind. Here are some of the issues that most frequently confront typical siblings — and their families — with advice from professionals.