Journey from What's Wrong to How to Help - My Asperger's Story

My story is about Luke, my son who is now 7 years old and in 1st grade. When Luke turned 2, he quite suddenly started displaying behaviors that concerned his day care teachers. He was quite an intense youngster, bowl you over with all emotions - positive AND negative. I remember describing him as a body rocker / head banger. Constantly seeking stimulation. His body rocking was an effort to calm. Head banging could be due to frustration or an effort to calm. Day care staff shared their concerns and asked if I'd had him evaluated. Evaluated for what??? They eventually kicked him out because he was a safety risk for the other kids.

I blamed the day care. They had young, inexperience teachers who didn't even have kids of their own. They just didn't know how to handle my special / intense little guy. So we searched for another day care center and found one who used licensed teachers along with assistants. It was a terrible struggle for the first few weeks, but he settled into the routine. Then he moved to a new room and all heck broke loose. Meltdowns where chairs, tables, and large toys would be flung at anyone & everyone. Again I was questioned as to whether I'd had him evaluated, with never an explanation as to what that meant. I'm not even sure they new exactly what they were asking.

Time passed and the staff kept trying to work with him. He moved to another room with a teacher who seemed less than patient and he got worse. He would cry at drop off time and try to follow us out of the room. Shortly after that he was kicked out because he was a safety risk.

This time I could not blame the teachers. I had learned a lot about my son while he was there and understood that most of the teachers were helpful and trying to make it easier for Luke. So I started to look into what was wrong with my child. I looked into ADHD, Sensory Processing Disorder, and a little into Autism. None of them seemed to fit him.

He had a very brief stay at a 3rd day care and then I hired a nanny. While he was home I learned about how food additives can affect behavior, so I drastically modified diet. That showed mild positive results, but now I believe the results were more due to him not being in a larger group of kids with too much stimulation.

I also began to use bio-med methods to try to fix him. At one point I had him taking 12 to 15 pills a day, all endorsed and / or recommended by his bio-med doctor. None of those pills fixed him. He still had major meltdowns and many other issues most kids don't have.

We eventually took him to a psychologist (in the start of Kindergarten), who diagnosed him with severe ADHD. In late October of that year, we admitted him to an out-patient program in a hospital psych ward, due to extreme violent behaviors. He was diagnosed with Asperger's Syndrome. I was stunned. Not my child. I continued to try to fix him, spiraled into my own depression and had major anxiety related to foods and supplements.

Fast forward to the summer between K and 1st grade. Our school provides a tuition based care program for before / after and non-school days. At the end of K, me and a few of the teachers met with the program director for this program, which I will refer to as VS. We wanted to share some of the strategies we'd found that worked to calm Luke. The director urged me to contact an organization that provides funds for extra VS staff, essentially an aide for Luke. So I submitted the paperwork, thinking that the only thing I needed was an aide. But then I hear of all of the other wonderful things that can be done for kids with developmental delays. It took quite awhile, but we developed a person centered plan for Luke. He has access to an OT equipment lending library, the potential for in-home sensory equipment, an aide for VS, and many other things. Parents have access to behavioral planning aid, autism conferences, autism support groups, background-checked respite providers and a small annual allowance, and many other things.

Now we've entered the "how to help" stage. I spent a long time in the "what's wrong with my child" stage and was not happy. Not only that, neither of my children, nor my husband was happy there. With a LOT of effort, therapy for me, and education - we have officially entered the "how to help" stage. I am no longer trying to cure my child, but looking for ways to help him succeed. We have only recently fully emerged ourselves in this stage and have only begun exploring and setting up services. But we are all happier than we have been in years. I am finally looking forward to this adventure of raising Luke, instead of dreading what problem will come up next.

A Date? Access to respite!

The biggest challenge Aaron and I face regarding dates is that we don't know babysitters.  We're not from this area and have no family here.  People that we know are usually either busy, or don't have teen kids that would be able to babysit.

Alas, that is where we will receive a HUGE benefit from the local developmental disabilities board.  We are financially sound and never dreamed that we would qualify for funds for babysitters (called respite).  But families who have kids with developmental disabilities (like Asperger's), can qualify.  Yes, I'm excited that we'll be getting money in support of babysitting services.  But what I'm MORE excited about is having access to the list of registered care givers, many of them with experience with rough behaviors associated with developmental disabilities.  That is worth WAY more than the funds, in my opinion.

So what are we going to do with this money and access to registered babysitters?  To start, I think we'll just have a few simple dates.  This will allow us to meet some of the care givers and maybe select 1 or 2 favorites.  And then later, we'll be able to have longer dates.  Aaron has always dreamed about taking long motorcycle rides.  I'm hoping that by late summer or fall this year that we'll be able to go for a day ride.  We've also been wanting to enjoy more of the local concerts.  We had a blast at the No Doubt concert a year or so ago.  It is difficult to plan these things because of the lack of babysitters.

Oooo - I'm very excited about this!

Autism Conference, Branson, MO - 4 March 2011

Yesterday I had the great pleasure of attending my first Autism conference. It was particularly exciting because both Temple Grandin and her mother were speakers. I enjoyed and learned from them both. Sean Barron was also a speaker there. He was diagnosed with Autism at about 5 years old. He has done extensive work on outlining social guidelines for people with Autism. I'm looking forward to reading Unwritten Rules of Social Relationships, which he co-authored with Temple.

Temple is such an inspiration because of her drive to succeed, in spite of Autism. And she has led a very successful life, both in her animal husbandry career and in her passion for helping families struggling with Autism. Her presentation has led me down a path of considering placing more emphasis on sensory therapy for Luke, instead of psychological therapy. I am beginning to suspect that the majority of his negative behaviors are related to his sensory problems. Allowing him to learn sensory coping skills may have a much larger payoff.

Eustacia Cutler, Temple's mother, is very inspiring to parents of Autistic children. Her daughter was diagnosed in the 50's, during a time when "refrigerator mothers" were blamed for causing Autism. What a terrible ordeal, to be told that the only hope for your child was an institution, and oh by the way - we think it is your fault. Between that and the complete lack of support from Temple's father, it is a miracle that she not only survived, but thrived. Her basic premise was (and is) to set expectations for the Autistic child. Never let Autism become an excuse. I strive to be that way. When I'm logical and feeling good, I think I'm doing a good job towards that. Sometimes I only see where I'm failing.

The final speaker of the day was Beth Aune, OTR/L. I very much enjoyed her presentation. It was more targeted to the teacher population in the audience, but it reinforced my feeling of focussing more on sensory therapy for Luke. She covered the basic information on the sensory systems and common classroom related problems and solutions. It was good to learn that some of the solutions were already being used for Luke at school. Also good to learn that some of the ideas would work just as well for similar problems at home. I am so glad I stuck it out for her presentation, instead of leaving like so many others did.

5 Positive Things - 25 Oct 2010

1. Ryan has a new friend, who seems to be becoming a good friend.  Mason invites Ryan over every so often and has come to our house a few times.  I always assumed this would happen earlier in the elementary years, but Ryan is in the 4th grade.  I am learning that it is really the parents who make things happen, and Ryan just never hooked up with another kid whose parents were the type to make it happen.  And I'm certainly not the type.  But now that I see how happy he is to be with a friend, I will be working on it with his other friends and also helping Luke in that respect.
   
   
2. I am having more and more fun at work.  I was recently asked by my manager if I would like to lead a new Design & Development group he is working on pulling together into his organization.  I accepted the challenge.  I'm scared and excited at the same time.  My BS is in Workforce Education & Development, so I have the background - but I haven't had much of an opportunity to use my design skills in quite awhile.  And when I was using my design skills, it was not true to instructional design.  So I am brushing up in that area, studying our processes, and becoming familiar with stakeholders.
   
   
3. Aaron and I have admitted our communication problems to each other.  We have both owned up to having problems communicating and have made a commitment to discuss things with each other in a non-destructive way.  We have also committed to making more time for ourselves and for us as a family.
   
   
4. I have been feeling really good lately, emotionally.  Between the changes at work, Ryan's more positive attitude, and our commitment to more "couple" and "family" time - I feel like things are finally pulling together.  I've been making a HUGE effort to focus on positives, and I think it is also rubbing off onto Ryan. 
   
   
5. I finally made the oatmeal scotchies Luke and I have been craving.  I made a pan version and they are very yummy.  We had some that were still warm after school.
   

Excited and Scared!

I work in a Learning & Training organizatiion within a VERY large company.  We've been needing a reorganization and cleaning up of RAAs (responsibility, authority, accountability) for a long time.  People who do the same job report to different managers and even are located in different sections of the organization.  It makes it difficult to get agreement on how and what to do in certain situations.  

Well, things are finally going to change.  As a result of the upcoming changes, I will be in more of a leadership role.  Not a manager - which I would not want - but like a team lead. I will be the lead for the Design & Development group.  These are the people who identify learning solutions and the people who either develop the solutions or work with suppliers to get the job done.  I would also hope that this is the group that will own the processes.  Not owing the process has been a major problem in the past.

I'm excited and scared at the same time.  I have not been very motivated about work for the last year or so and my manager finally told me that he sees that.  He shared with me that he thinks I'm a good candidate, but that I would need to be more assertive and MUCH less passive.  I think it is really great that he would trust me with this role, in spite of his reservations.  I think it is what I need to push me in the correct direction and get my working groove back.  And a lot of the changes they're talking about making will resolve problems and remove roadblocks people in this position experienced in the past.

Some Things Have Changed for the Better!

I've been thinking about this for awhile now and thought that it is time to share.  I'm naturally a happy person, but had a long spell of grumpiness that I feel I'm coming out of quite well.  There were several contributing factors.  Motherhood is much harder than I ever dreamed.  I used to cherish my independence, but now I have two kids who need quite a bit of my attention.  I'm not a very patient person, but these kids need more patience than the average kid.  I am learning though.  You'd think almost 10 years into motherhood I'd be pretty patient, but I realize I am naturally an impatient person.

I recently had a hysterectomy because of constant abdominal pain.  I've been mostly pain free since then, but had a bout of pain over the last few days.  This made me realize how much of a contributor the constant pain was to my bad mood.  I was more likely to snap at Aaron or the boys, swear over minor frustrations, etc.

Now for the biggest change, my acceptance of the problems in my life.  Over the past year I've been informed that Luke has ADHD, then was told that it is not ADHD, but Asperger's.  I've also been informed that Ryan has Generalized Anxiety Disorder (GAD).  And to top it off, I've been dealing with my own anxiety / depression.  I have come to accept these things over the last few months.  I was in denial for a long time about Luke's Asperger's.  I was looking for a cure and now I know that I need to focus my energy on looking for ways to help him function to the best of his ability.  I was also looking for a cure for Ryan, but have switched to helping him learn how to manage his anxiety.  In the process of doing this, our relationship is improving.

Ryan Made My Day!!!

He has been dealing with anxiety / depression for a long time.  He is not confident in himself, tends to be overbearing, and is driven to be the best at everything.  Over the past few weeks it has been really bad.  He wanted me to remove the knives from the dishwasher, for fear he'd intentionally hurt himself.  And then he came right out and claimed that he felt like killing himself.

Woah!  So we've been talking a lot about anxiety and how it makes a person feel.  We are reading together Stress Can Really Get on Your Nerves! by Trevor Romain and Elizabeth Verdick.  We've just begun, but it is clear that Ryan has several anxiety symptoms.  I'm looking forward to getting into the sections that talk about how to manage stress.  I think that both of us could learn better stress management skills.

Now on to the part about how Ryan made my day.  Yesterday he wrote me a letter.  He said that I am his hero because I'm always so helpful and nice.  He also feels that I'm helping him deal with his depression.  That is very important to me.  I do not want to dismiss his feelings, or invalidate them.  They are his feelings and he has a right to them.  When he needs help dealing with his feelings, it is my job to help him find resources.