Right off the bat let me state that this is not an autism blog, it is a Scrapbook Lady's blog. I'm not claiming to have all the answers when it comes to autism. There is such a wide range in the symptoms of autism that it really is a hard disorder to explain. I'll just do my best to relate some of our own personal experience here and point you toward some helpful links and information if you want to know more. Oh, and because I'm a "Scrapbook Lady" I will include some layouts to illustrate some of the points. If you want to read the journaling on the scrapbook pages you can click on them to make them bigger.
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Autism has been a big part of my life for the past 11 years since my son was diagnosed on December 31, 1996 at the age of 3. Yes, we really had a psychiatrist appointment for him on New Year's Eve day. Sort of put a damper on New Year's Eve for several years after that. I didn't realize it at the time but it was a huge blessing that the doctor immediately diagnosed him with autism. There was no question. He had almost all of the symptoms. We were in heavy denial though so it took some convincing before we saw the light. We were devastated. He was our first child. He could read but could barely communicate. He could talk but he just repeated what we said or recited lines from movies. There were so many obsessions and fears, but none were as startling as his reaction to his little sister who had just joined our family in September of that year. He wouldn't even go in the same room with her.
We cried. We mourned. Mostly, we just got to work. He started in a special needs preschool in January of 1997 and started occupational therapy. We continued on with the speech therapy we had started in November of 1996 (which is what lead us to the psychiatrist - a recommendation from his speech therapist). We enrolled him in a special needs preschool.
I could write a book about all of this. In fact I actually started one and got about 45 pages done. The rest of it is in my head. It got overwhelming and I decided to spend the energy on my family instead of the book. I may decide one day to finish it or at least turn it into some blog or magazine articles.
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This is my son at the age of 3. These pictures were taken just about 2 weeks before he was diagnosed.
Those are the biggest indicators of autism. You have to have several symptoms in combination to be classified with autism. Fewer symptoms might mean Asperger's or even something different than autism related disorders.
There are some good facts about autism at http://www.ninds.nih.gov/disorders/autism/detail_autism.htm and also some links for further information.
I have listed symptoms and types of autism in this blog post at http://scrapbooklady.typepad.com/katie_the_scrapbook_lady/2008/05/autism-defined.html
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There is no cure for autism, but there are treatments. The most important treatment is early intervention, which basically means helping the child and the family as much as possible with language, social skills, learning skills, and addressing any other special needs such as sensory issues. All of this means a very full schedule for a young child who is already struggling to get through each day. Oh, and very long days for the parents also!
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Autism is a developmental disorder which means there are delays in development. My son was quite delayed in the areas of speech, play, social skills, fine motor skills, and he wasn't potty trained until he was nearly 5 years old. I was terrified that my 2 year old daughter would beat him to that accomplishment, but he finally got there!
Notice him sucking on his sleeve in that picture? He used to do that all the time. His sleeves and collars were always wet and we went through shirts like crazy. When he got a little older we made him necklaces with pieces of tubing on for him to chew on (don't do this for little kids who might choke). He finally broke the habit a few years ago, except for once in a while he will still suck on his collar if he is deep in thought.
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He has always had a lot of sensory issues and probably always will but he has learned how to manage these better with age and maturity. (so have we)
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Now my son has an incredible vocabulary and anyone who meets him would never believe that once upon a time he could barely talk. He can be quite chatty now and he is incredibly entertaining. He is very smart and has an amazing memory. He has also matured a lot and has greater control over his behaviors and emotions. In fact he is very pleasant to be around almost all the time now.
I don't dwell too much on the past, but it's good to look back once in awhile so we can appreciate just how far he has come.
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What a joy it is so see proof of his progress! Sadly, not all people with autism are able to make such strides. I have seen a lot of kids with autism though because of our experiences and they do develop and grow. Even in the most severe of cases I have seen progress but it takes an enormous amount of energy and work. I don't want to sugar coat things because life truly is difficult for many people with these challenges. And although my son is doing very well now, there are still hurdles to overcome.
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But you just have to take it a day at a time. It's hard sometimes, but I also think you gain a greater appreciation for the simple joys in life.
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and sometimes you just have to laugh at some of the hard stuff. A sense of humor really helps keep you sane! I will tell you that I never judge a parent of a misbehaving child in a store because you really just don't know what the situation might be. We've had some really big meltdowns in some really public places. I can laugh about it now but I'm sure glad it's in the past! Here's a minor but very embarrassing incident that I just had to include in the scrapbooks.
You can read my Target story here
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Eventually you just get a little smarter about the whole thing. Why didn't we think of ear plugs years ago?!
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What should you do?
So what should you do if you suspect your child has autism? Start with your pediatrician and if they don't think it is a concern but you are still worried, get a second opinion. Don't waste precious time! A good starting place is a hearing test to rule out any problems. My daughter had so many ear infections that she actually had damaged hearing for awhile and it impacted her speech. If there are speech delays go to a speech pathologist for an evaluation. If there are sensory issues see an occupational therapist. You can do all of these things without a diagnosis of autism so don't wait around for that. And the specialists might be able to tell you their opinion of whether you need to further pursue a formal diagnosis. There are some kids that just need some of these therapies even if they don't have autism so don't panic about that.
And if you get the diagnosis of autism, don't give up hope. It's ok to mourn and be sad, but then you have to get moving and do everything you can to help your child. I promise that it works. Sometimes it takes a LONG time, but it does work!
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If autism is part of your life here are a few tips for including it in your scrapbook albums.
1- Don't be afraid to include autism in your scrapbooks. It is a big part of your life. There was a time when I was hesitant to scrap about autism. It was sad and overwhelming for me. I wasn't sure what the future would bring. I didn't journal about it much until recently. Time has made it easier. Now I am going back and adding some autism related layouts to my son's albums.
2- Include educational settings, therapies, and other interventions in your layouts. It will be a good timeline and a wonderful lifelong reference for everyone!
3- Of course you should try to include pages about the individual and not just the autism. Focus on successes as a picture can be a great learning tool for someone with autism. Even if you can't get the typical kind of holiday pictures, just celebrate who they are and include them in your albums
4- Remember that a meaningful scrapbook is an authentic one. No need to pretend that autism doesn't exist for the sake of your album!
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Here are some other posts I have written relating to autism:
good people can make a difference
what kind of world do you want?
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for credits on all the layouts used in this blog post, visit my gallery at scrapbooklady designs
