Sunday, July 1, 2012

Some regrets and some planning for the future

When you are raising two sons that are fifteen months apart on opposite ends of the autism spectrum some of their issues or needs might not be addressed due to one taking precedence over the other.

My son Matthew turned 16 yesterday and gives me time to reflect on what we have endured and gone through since the diagnosis of autism at the age of two. Nicholas was diagnosed first and when Matthew was diagnosed I had assumed he would not be as severe as Nicholas. The opposite happened instead with Matthew still not toilet trained and nonverbal. I wish I had done somethings differently and pursued other treatment options. This was at a time that having two with autism in the same household was not common. Every time I had an assessment for therapy for Nicholas or Matthew they wanted to give services to both boys when clearly they had different deficits and symptoms.

For five years we had medical students coming on Sundays for an hour to learn about autism and spend time with Nicholas. This was my way for him to get some individual attention. For two years we had the same girl coming every week. The last year was a guy who would bring his girlfriend with him and talk about girls with Nicholas, which was inappropriate.

I had an adaptive skills trainer for six months come and help him learn some skills, but then opted not to continue with that due to the way the guys dressed and feeling uncomfortable with them in my home.

For a number of years I was a member of a DTT-NET egroup, although I hardly participated and more just absorbed all the information shared. DTT stands for Discrete Trial Training. We did not get the services other families did through the Regional Center. I should have pushed harder to get some therapy for Matthew to teach him to talk instead of them always focusing on pecs and sign language. Neither one of those worked for him.

Now at age 17 Nick is interested in basketball. One of the Sunday volunteers had younger siblings involved in sports and she would share all about those events. I was hoping to get Nick involved in sports or musical instruments. Maybe had I pushed he would have had another activity to meet his peers. We could not do these though because of Matthew and his therapy appointments and issues with behavior and eating.

Nick missed out on a lot and I tried to make it up to him by introducing him to Yugioh and Pokemon. I bought the gameboy for him even though he had no interest. That helped him in Elementary school as he had more in common with the other students. At the time all he talked about was Dinosaurs.

From third grade on Nick wanted to go to the LA Zoo High School Magnet. His fifth grade teacher told me he would be good in Drama. Nicholas has recently told me he no longer wants to do online school and want so go back to public school. Next year he will be a Junior so we will use that time to prepare. The computer desktop is a loaner through his school so we need to get a new one. He needs clothing and to work more on his personal hygiene and communication skills.

There is also the issue of which high school to attend. There are several within our home address that are known as his home school to choose from. We are considering an art academy. He spent his elementary school years drawing in note pads. We had at one time over 100 of them with his comic book drawings and his stories and characters.

Other families helped their students explore and take their art drawings to the next level. We had ideas to make cards or sell mini books on etsy or other similar sites. I think Nicholas just needed some nudging to get there but due to issues with Matthew I could never find the time or money to help explore this venue with Nicholas.

Recently the regional center coordinator had suggested that when he goes to College and takes art he may get some feedback from a teacher that would be beneficial. He is now open to drama classes. I just feel like all these ideas I had three years ago are now coming to light so we need to roll with it while the interest is there. I guess it is not too late.

I cannot plan out his life for him but have shared with him how his interests can be something to explore for career. He loves watching some food shows like Cake Boss and I suggested taking a year to go to cooking school - this is good for his future as he will learn a vital skill. The art is a fun hobby he needs to be open to and learn about other aspects and not just be limited to drawing. He wants to work at the Zoo or at an animal Sanctuary someday. At this point he needs to work on learning some office type skills and do internships or volunteer at organizations for animals or shelters to get that experience.

Matthew will be going to high school until he is 22 so the has many more years in the school system. Once he is toilet trained I want him to take part in the after school track program for special ed kids and then move on to Special Olympics. I do hope to take the one-year certificate course at the community college to learn to be a special education assistant. This will help Nicholas when he attends that college so we know the layout and system. Also will be something for me to fall back on.


Unknown said...

Thanks Bonnie for the detailed and sensitive window into your life with Matthew and Nicholas.

It really helps those who are not familiar with autism get a sense of the wide range of issues you face.

Good luck to you all in the coming year.

Kimberly Storms said...

I can only picture a tiny bit of what your life must be life and how hard managing it all must be for you. Please be kind to yourself, you did the best you knew how to at the time and your time raising the boys is far from over.

I hope you do make it a priority to take that college course yourself, you need you time for one!

MDCudahy said...

Thanks for sharing, Bonnie - and know you're not alone. I have experience similar to yours, and second-guessing is part of the deal. You obviously love your children very much, and want only the best for them. They'll know that - and that makes all the difference. Best of luck!

Richard Townsend said...

I admire you courage Bonnie and if we could go back I think we would all do some things differently with our children. Regrets are of course a road to nowhere. Thank you for sharing your thoughts and feelings and stay positive. Ric

Unknown said...

keep getting the word out and doing what you do Bonnie

RCToyPalace said...

Thank you for sharing, Bonnie. I think that you do your best each day, for all your family. Second guessing and regrets are of no value, just some more of yesterday to carry into tomorrow.

abhijit said...

Thank you for the sharing - I relate to it at a different level - having a younger brother who was born with cerebral palsy and all that my mom has gone through in getting him to connect with life !

Vanessa said...

I think you should be proud of all you have done for your boys, sometimes we which we did thing different, but everything happens for a reason. thanks for sharing .

Unknown said...

Thanks for sharing, Bonnie, your regrets and hopes for the future. I hope all goes well, Tom

Anonymous said...

read your article thanx for info

VPerriello said...

My Aspie son likes cooking and when he decides he wants to learn how to prepare something new he commits everything about it to memory and he does it perfectly every time. I know it pleases him greatly to cook for us. Perhaps a year at a cooking school would be a good thing for Nick... those skills might serve him very well!

You, dear lady, are a rock. I can't think of anyone I know who could have done as well with two autistic sons.

Anonymous said...

It's difficult to raise a child. However, no one could just read a book or follow a strict program. Every parent knows that it's a learning by doing process. I never regret the decision I made when my son grew up, though everyone was saying that could be a different one.

Anonymous said...

Don't regret. It's a learning by doing process.

Anonymous said...

It's a learning by doing process.

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