Saturday, July 3, 2010

The Teenage Years are Tough

One of the interesting things to emerge from my blog is that parents are emailing asking for advice on what to do with their own teens with Autism Spectrum Disorders (ASD). There are many families in crisis, and they all want to do what’s best for their children. They just have no idea what to do. Their child’s school isn’t equipped to help, it’s tough to find professionals that really understand the issues, and when they do, the fees for the services are usually really high. It can suck to be a parent of a child with ASD. You have this terrific kid but the all cool stuff is masked by his outwardly obnoxious exterior, and you have no idea on how to solve the problem.

I received this letter through the Autism Support Network (which is a terrific site with great resources). I was really moved by how tough it must be for this Mom to be a parent to her step-son, and how un-empowered she felt. I’ve changed the name of her and her step-son so I can honor their privacy, but I’m absolutely positive that this family dynamic is repeated in thousands, maybe millions, of families with a teenager with ASD across the world.

Hi Susan: Yours is an inspiring story. I am the step-Mom of a now 17-year-old Aspergers boy, Jack, and my story is not inspiring. On the contrary.

Jack’s birth-Mom was able to get him diagnosed at about age 6. He was enrolled in a small school for like-minded kids through middle school and is being main-streamed in High School. The residential transition goal set up by the HS are a half-way house or live with his Mom and for work skills to attend a vocational school. He has a very high ability in some subjects, Math and Science, but the aides do a lot of his homework for him. As I see, the family has done no training or help at home. Jack’s home life when his parents were married was very dysfunctional with each family member going into hiding to their own rooms with their computer or TV. We live a two-hour driving distance and we find it very hard to be of any real help. My husband has given up, and I can't do much without his support.

So, every for the 2-3 weekends a month that he spends with us, Jack plays video games 24-7. He is allowed to do whatever he wants, including not being called on rudeness to me and others. Jack has absolutely no interests outside of computer and TV, except an occasional involvement with gems, and has absolutely no friends. He lives in a dream world where all of his needs are met without any effort of his own. He has low academic skills, no work skills, no work ethic, and no sense of any need to take care of himself.

My husband and I are beginning counseling. Adding to this is that my husband is undiagnosed Aspergers, and our communication is very troubled. I couldn't find an available specialist in Aspersers for counseling in our area, so we are working at this time with a counselor with many years of working with blended-family couples. I have found an Aspergers specialist out-of-state who we might be able to see intermittently.

I feel horrible about myself, that I'm an unloving failure, and powerless. I feel I’ve neglected myself, as Jack is in driver's seat, and I'm the 4th wheel in the family. Sorry for this long rant!.  Anne

Wow, I thought, this woman is really suffereing. I know at some point, she was happy with her husband. She loved him and she married him thinking she could handle anything with his son even though she understood the boy had special needs. Unfortunately, no one, I mean no one, can understand what it is actually like to have a teenager with ASD until they themselves have lived through it. Especially if your child is “high functioning” or “Aspergers”, your child is very bright. Many times they are doing well in school. If they aren’t, it’s even more frustrating because it seems that if they just applied themselves, they’d be straight A students. What is wrong with my kid? Why can’t he just do what he’s supposed to!  Add to this the fear that they have no friends and they are difficult to get along with and you have a daily state of stress that is difficult and at times feels impossible to live with each and every day.

I’ve been there, and done that. Jacob is one of the smartest kids I know, but motivation about academics was always a challenge. I know now that Jacob had problems with reading comprehension, and the school that he that attended from third to ninth grade never identified or remediated the disability. In the eighth grade, his reading comprehension was tested at a fourth grade level, and this was only done because I requested an assessment for his IEP.  The problem was never figured it out in his five years of enrollment, and this school is a well-known for specializing in educating children with social communication disorders. I can only imagine how tough it is for this young man whose high school transition plan doesn’t even include a goal of living independently in his community after he leaves his educational environment. I sure don’t want my Jacob to live in a half-way house, and I definitely don’t want him to live with me or his father until either of us are dead.  I'm aiming much higher in my objectives for Jacob.

So here was my response.  This would be the same advice that I would give to any family with a teenager with ASD, and the teen is completely addicted to his computer, You Tube, video games, and DVDs as well as being unmotivated in school and is socially isolated and cut-off from his community.

Dear Anne: I really do feel for you. I can tell in your letter that you an extremely compassionate and caring person. You deeply care about Jack, but you don't know what to do to help. I can only image how frustrating all of this is for you to deal with on a daily basis. 

It's sad, but there are thousands, maybe millions, of young adults just like Jack all over the world. Due to no fault of their own, parents are greatly challenged with a child with ASD.  They loose their ability to be competent parents, and the child grows up to be the one in control instead of the other way around.  You mention your husband has undiagnosed Aspergers. I'm guessing that Mom may have some similar issues as well.

It is absolutely necessary to make your home as calm and tranquil as possible.  I'm happy to hear that you and your husband are in counseling and you're seeking counseling for Jack.  Chaos at home is not a productive or healthy environment for anyone.

Be sure you are taking care of yourself. I was a single mom with a young child with ASD, so I know how easy it is to let your child monopolize all of your time. Start by adding something small, like a 10 minute daily walk or reading before bed each night.  Do something you really enjoy each day just for yourself.  If you can afford it, treat yourself to a massage or facial or anything that makes you feel relaxed and rejuvenated.  Don't forget to take care of everything related to your health including appointments with the doctor and dentist. Exercise regularly, eat well and get a sufficient amount of sleep. As much as you want to correct your home issues, you can't be there for anyone if you haven't first taken care of yourself.

Keep in touch with your friends and family outside of your husband and children.  Schedule time to hang out doing whatever you enjoy doing.  I know life is busy, but make definite plans at least once a month to do something special together be it lunch, a movie, or a walk in the park.  If your gal pals can lend a supportive ear, that's great, but don’t depend on them to be a substitute therapist for you to unburden what’s up at home.  You want to spend quality time, so as much as you can, try to make this a place where you don't deal with or talk about anything relating to Jack.

For support, find a group of parents that you can meet on a regular basis.  Ask your current therapists for a referral of a parent support group in your area for teens with ASD or Aspergers.  You can also connect with the parents of students in Jack's classes.  Ask his teacher for the telephone numbers of his classmates with special needs.  Since you're 2 hours away, meeting for coffee once a month would be a good start. I did this when my son was in grade school, and I found it to be very helpful.

So what to do about Jack? Unfortunately, Mom sounds like she is overwhelmed so you won't be able to count on her. One of the first things to do, and this will be really, really hard, is to get Jack away from the electronics. Get him out of his room and doing stuff with his Dad and/or with you. Going cold turkey would be a complete disaster, so start by putting a limit on the amount of time that Jack spends on the TV or computer each day. Since this is his whole life, you'll have to give him a bit more latitude at first, but you definitely want to reduce the amount of time he's spending engrossed with electronics and more time interacting with people. 

You and/or Dad will also need to start donig anything with Jack.  Spend time together teaching him how to do things. Have him help around the house. If you have a washer/dryer, laundry is an easy one.  If you have a yard, mow the lawn, water the plants, and pull weeds. If you have a hose, wash the car together.  Cook dinner, walk the dogs, ride a bike, take up tennis. If you or your husband have a hobby or talent for something, you can spent time teaching this to Jack.  You mentioned that he has an interest in gems, so try to develop this interest with him.  You want to do anything that gets him involved with you and/or Dad and away from TV and computer.

In your role with Jack, you and/or your husband will be guiding him, and he will be your apprentice who learns from your wisdom.  If it is somehting that Jack has mastered, you can switch roles and he can guide you.  Finishing the activity, be it making dinner, mowing the lawn, or biking to the store, is not the goal.  You want to focus on spending time together and having Jack look to you for guidance and approval. You want to stay in the moment and have a positive, shared experience. It’s ok if some of these activities foster independence.  Cooking, cleaning, and laundry are all things he'll have to do for himself one day.

Expect a lot of resistance.  Jack will not like having his world challenged.  He'll probably call his Dad the worst parent in the world.  He may call you in appropriate names.  This is going to be a very hard thing to implement.  But remember, you are the boss.  You are in control.  You are the one calling the shots.  Jack is going to challenge to from  here to the end of time, but hold fast in your belief that you deserve respect for what you say and how you think.

The program I recommend, and that incorporates all of what I just mentioned, is Relationship Development Intervention or RDI. I've been doing it with my son. All I can say is if you put in the time, the program works, big time.  It's the core part of the curriculm of a school that I run, and I've seen children that are highly impacted with co-concurring conditions and non-verbal that are now starting to communicate. It's made a huge difference in the relationship with my son. Go to http://www.rdiconnect.com/ for more info.  The RDI program founders are Dr. Steven Gutstein and Dr. Rachelle Sheely, and Dr. Gutstein's latest book is The RDI Book.  Read it.  It will give you a tremendous insight into the way Jack's brain works, the reason for his behaviors, and a good explanation of the program.  What I really like about RDI is it helps parents look at the health of the entire family, including spouses and siblings and not only the parent-child relationship, so you'd be addressing all of the home and personal issues that I mentioned above.  It would be great if the Mom would be involved, especially since Jack is spending a majority of time at her house, but you'll have to work wtih what  you've got.  I do it without my son's father being involved, and it's been ok.  But I'm positive Jacob would be much further along if his father was on the same page at his home.

Best of luck to you. I know there is a lot on your plate.  It's not healthy to feel sorry for yourself, but sometimes its tough to understand the reason for the challenges that life hands you. I really urge you to check out the RDI program and buy the book. I think these are the best remedies to help your family in the long term. Take care and keep in touch. I'd like to hear how things are progressing.

3 comments:

  1. I want to thank you from the bottom of my heart. Your blog is written in "People First Language" and one entry comments on "autistic" and "has autism"

    I read so many things online about "autistic children" and people ask if my son is "autistic". There is just a negative perspective when it's said that way.

    My son, Levi, has severe autism. He is beautiful, funny and rotten all rolled into one. Thank you for using people first language. It's hard enough raising a child with autism...I just wish more people would think about how they phrase things.

    Thank you!

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  2. Hi Amy: I totally agree. My last post makes mention of "having autism" as opposed to "being autistic".

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  3. Did you get hold of my son and Alex at ASA? Send them a message through FB or Twitter with your phone number and try to connect. . . .

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