Saturday, June 23, 2012

Everything is Going to be Alright


I love having  a mantra.  Don't sweat the small stuff  and it's all small stuff, I used alot when Jacob was a youngster.  Everything is going to be alright.  That is my favorite one right now; I even imagine Bob Marley singing it.  But at times, this one is a bit harder to embrace in regards to Jacob's future even though by all accounts it's smooth sailing these days.

As a parent of a child with an autism spectrum disorder, I took a lot on faith while Jacob was growing up.  That the expensive bi-weekly speech therapy was really worth it.  That his classroom aide was truly dedicated in her job supporting him.  That eventually, he would mature into a productive, happy, and independent young man. Now that he is 18, I can see that most of the time, his behavior shows that he greatly benefited all of his interventions.  I can now see that he has the ability to successfully transition to adulthood and possibly do it well.

I know that I was extremely lucky to live in the community that I did when Jacob was growing up.   The office of the doctor that first diagnosed him was located just a few blocks from my house.  Our public elementary school had excellent services including an amazing occupational therapist who was employed by LAUSD.  Jacob and I were part of several playgroups that became great social opportunities for both of us.  There were beautiful parks and the beach was just a mile west down the hill from where we lived. I was also lucky because I co-owned a successful business with his father that I managed part-time from home.  And because this, I had the time and money to focus on Jacob and what he needed.  I was available to drive him to doctor and therapy appointments.  I had time to coordinate information between his school and all of the professionals that were hired by me to support him.  I could spend time developing his imaginative play by sitting on the floor and creating fun scenarios with his plastic toy animals and Thomas the Tank Engine trains.

It's sad to see that California is proposing such large budget cuts to social services because the Westside Regional Center was and continues to be a tremendous support for Jacob and me.  We had the same case worker for almost ten years who was wonderful, and every case worker since has been a a great advocate for him..  WRC has funded so many wonderful experiences including summer camps, swimming lessons, social skills classes, even covering the fees for my RDI Consultant.  I relied heavily on WRC, so when I hear about all of the funding cuts that are being proposed to the Department of Developmental Services, I wonder how much longer can the entire Regional Center system survive.

All of the wonderful supports for Jacob have paid off, and when you observe him today, he is doing great.  He's a confident young man.  He's getting good grades in school.  He just completed his second Workability-sponsored retail job.  He's even starting to venture out into the community with his peers, and this only started yesterday.  It was the last day of 11th grade and he went out to lunch to Dennys with his friends from school.  This was a huge step for him, and a huge surge of happiness for me.

But there is still a ways to go.  Does he engage with my husband or me in conversations on topics outside his own interests?  Rarely.  Does he have an idea if he wants to go to college or what his career path might be?  No idea at this point.  I've told him that he can pursue anything after he graduates, and it doesn't matter if it's work or school.  The only option not available is doing nothing all day.  He says he understands, but, right now, he can't make a decision about what he'll be doing that far in the future.  That's cool.  He doesn't graduate for another year so I'll let him enjoy his carefree high school days while they last.

Now that Jacob is 18, he's legally an adult.  He has the right to choose what he wants to do with his life even if I don't agree with what those choices might be.  As long as he's living a moral, ethical, and law-abiding life, I have to back off and accept whatever Jacob decides.  I have to remember that he is now a young man, and he deserves to be treated and respected as an adult.

So, do I really feel that everything is going to be alright?  Yeah, I do.  But does that mean I still worry that maybe everything is not going to be alright?  Yeah, I do that too.  I think as a parent, I'll always wonder if Jacob is happy, doing well in his job and pursuing his dreams, and I'll do this regardless of his challenges.  I think about these things because I'm Jacob's Mom.  And because I'm Jacob's Mom, I'm always going to hope that everything is going to be alright.

8 comments:

  1. Thank you! Great article. . .As Eddie Gold's grandma, I bow to the enormous energy my daughter Chris has put into making Eddie into a fine young man. Hopefully, with the help of Regional, he will be a new CIP student in the fall. After visiting the CIP program in Berkeley, there is NO question that it is the place for him!!

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    1. Thank you Gail! Saying we are excited about Eddie joining using in the Fall is an under-statatement!

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  2. Hi,
    Your story is very interesting and I can relate as I have a 25 year old son with autism who was diagnosed very early (thank God). He is doing well also considering where he was but he is still struggling - currently in locating a job. I live in NJ and the job market is horrible for the neuro-typical world so add on a disability like autism, well, I don't think I have to tell you. He graduated from a very good college in 2010 and is still unemployed. This is really getting to him now - self-esteem very low. I try to tell him it's the world right now but that doesn't give him much comfort. I have often thought of how great it would be if I could form a non-profit organization here to help young adults on the spectrum find employment. It looks like that is what you do as a profession so I was wondering if you had any advice.

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  3. Volunteering or doing community service while he's looking for a paying job will not only keep his mind off not having a job, but if he does well, he may be offered work. He volunteer to work as an intern at a company where he'd like to work; if he does well, he may get a job offer. If you think he needs a job coach, make sure he has this support right away. You want him to be successful, so at the very least, make sure there is someone at the company that he can turn to for guidance on the job if necessary. Make sure that the environment is a good match as well. He may have sensory overload at someplace like Subway or Home Depot; getting a good OT evaluation would help in being proactive in finding a good fit. You also need to be sure that you address social thinking, so I would recommend reading Michelle Garcia Winners "Social Thinking on the Job". You'll learn alot of proactive ways to support your son and how the unspoken political aspect of the work environment needs to be addressed. Best of luck Mary Ann - he's lucky to have such a caring Mom like you.

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  4. Thanks so much for your uplifting post, Susan. Our experiences are so similar! My son Eddie is now 18 and was identified on the autisitic spectrum at 2 and a half. We lived in the LAUSD district and enjoyed all the same benefits of school sponsored therapies and Regional Center funding. Like you, the Westside Regional Center was our saving grace, funding everything from horseback riding lessons to one-on-one aides at afterschool programs. These experiences were absolutely essential to Eddie's socialization and helping him become the caring, friendly person he is today. As a college professor, I too have had the flexibility to carefully manage his services.

    I often think of the all the parents with kids on the autistic spectrum who have not enjoyed the oppportunities and advantages we have. I remember the kids of Spanish-speaking parents sitting on LAUSD waiting lists for years before finally receiving speech or occupational therapy. Many kids with unidentified special needs have been "buddied up" with Eddie and his aide in school classrooms, because parents were unable to successfully navigate the complex system of IEPs or were unwilling to acknowledge their child's needs.

    With inadequate funding, our schools simply can't afford to provide the necessary services for all the children with special needs. For those of us who live in California the November vote on the California budget is absolutely critical for special needs kids in California schools.

    Regional Center funding is also essential for our adult children. When we are no longer around to advocate on their behalf, we are trusting that the Regional Center will watch over them. If the Regional Center dissipates, what would happen to the special needs adults without trust funds or families to care for them?

    For the sake of special needs kids and adults, we all need to vote for and advocate for the Governor's budget in November.

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  5. Hi – Will you please post a link to your important Blog at The Autism Community at vorts.com? Our members will really appreciate it.
    Members include: Those living with Autism, parents of children with autism, their families, friends, support groups, etc.
    It's easy to do, just cut and paste the link and it automatically links back to your website. You can also add Articles, News, Photos, and Videos if you like.
    Email me if you need any help or would like me to do it for you. I hope you consider sharing with us.
    Please feel free to share as often and as much as you like.
    The Autism Community: http://www.vorts.com/autism/
    Thanks,
    James Kaufman, Editor

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  6. I had no support growing up. Wasn't even diagnosed properly until I was 30. Now at 42, I feel like I've finally grown up: I have 16 years of a career in software engineering behind me. I'm married and a special needs father myself of a 9 year old, extremely outgoing but language delayed boy (he tires me out! so incredibly social! Not autistic at all). I'm Catholic, so I joined Knights of Columbus, and actually got 32 guys to agree to form a new council this year.

    Competence covers up a lot of autistic sins. I still stim. Sometimes my skin itches so bad that I tear holes in it that bleed. Drives my wife nuts. I usually avoid parties that don't support an interest that I am interested in. I don't cry at funerals, retreating in and getting very rational instead. I can't look people in the eye, so I stare at foreheads- and due to that, am so face blind I can't even tell race apart (needless to say, as a Grand Knight- this is a bit of a problem, I end up calling everybody "Brother" unless I'm VERY sure of a first name).

    But it's all just life. Give him time to find an obsession- then work hard to turn that obsession into a career. The 3% of autistics who do successfully transition to adulthood all seem to follow that path- some in their teens, some in their 20s, a couple I know in their 40s. The subtle work-to-pay basis of the American Economy is far too subtle for most autistics, and makes no sense anyway even for many neurotypicals- finding out what you'll do without pay and then doing it for pay, is the key to happiness.

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