February 3, 2005

A new approach in the new year

So suffice it to say that 2004 was the worst year ever. We discovered Chandler's autism, confronted it with all we had, saw the little guy improve, and mommy and daddy crossed the finish line exhausted and bleeding.

So it is time to slow down, take the experience we have gained to roll back our treatment approach to the things that we know work for him, and have a life again.

Unlike my loner son and his semi-loner dad, I am a profoundly social animal. I have sacrificed spending regular time with my beloved friends over the past year and it has really taken its toll on me. Much of my identity has always been wrapped up in my relationships and frankly (as a former therapist) encouraging my friends. While my children of course take priority to my friendships, the prolonged disengagement from my social life has had more of an impact than I knew.

In early Dec when the first Christmas event came along, I had not planned to attend, but was coerced into helping out with it. It turned out to be one of the richest experiences I had had in a long time. I decided that even if it killed us, we were going to have our annual Christmas party. We ended up pulling the party together in just two weeks and it was a great time. By the end of the party season after New Years, we had fully thrown ourselves back into our social circle and Chandler's treatment had become a pretty low priority. We had gotten lazy on his supplements, and because of the vacation, his therapy was sporadic to nill and as a result, he had gotten a bit more difficult to deal with, but not to bad really. The upside was that for the first time in a long time Scott and I felt almost normal. Being able to Actually live our lives again made me realize how extremely shitty the isolation had become for me.

So this month we have decided it is time to strike a balance. We have gotten him back on the supplements that we know work for him, and only give him the others occasionally or when we remember to. We have also cut back on some of the therapy that seems to be less effective for him. I have started scheduling regular play dates for my older son, who has been house bound with us this past year, and going over to visit with my girlfriends on the occasional evening rather than pouring over autism reading.

The result for Jan has been a much happier household, and low and behold, about two weeks ago Chandler started making some new improvements! More on that to come...

4 comments:

Editor527 said...

I feel your pain. My 5-year-old nephew has autism and we have spent the better part of the last three years trying to find the right therapy for him. The problem is that where we live, in suburban Chicago, there are no opportunities for him to get the education he needs. The local school district won't let him into their program because they say he is "too disruptive." So, they keep trying to put him into regular special education classes at the local public schools, even though the teachers and the cirriculums are not adequate for the kid's needs. The only real autism program in the area is 20 miles away and has a waiting list a mile long. Plus, the doctors have absolutely no explainations. No pills, no therapy, nothing. We've gone through countless numbers of speech therapists already, since he still doesn't talk. It sucks, I know.

Anonymous said...

We've missed you terribly TOO Ging :-) Our lives are much richer with you in them. We all love Chandler so much and even though we've missed you, we've all understood the importance of what you're doing - learing everything you can about autism so you can give Chandler the best future possible. We're VERY proud of you and the dedication (even through the tears!) that you have to your be-YOU-teeeful boy(s)! All you need is love....waa wa wa wa waaaaa....
~Brynn

Ginger said...

Thanks so much for the love you guys.

Anonymous said...

I been reading your blog, and it has inspired me so much. My son's name is also Chandler, he is 5 years old, and he is autistic. I wish I had started digging in deeper at an early age like you did. He has always recieved therapy, but in the last year I really dug my heels in and spent hours a day pouring over information on the internet, and reading books at night. Don't forget to have fun, and still take them places. My Chan really likes the pet store and the aquarium. And take care of yourself, remember, if mama ain't happy, ain't nobody happy! And keep up the blog..i love hearing what other hard working parents are doing!