In So Many Words

Yes, you read the title right — this post is about a revelation, not a resolution. I am not making any resolutions this year, but I do want to tell you something. This will probably be a long post, so I hope you’ll stick with me to the end.

For those of you that would rather go straight to the bottom line, here it is: I have recently been diagnosed with Asperger’s Syndrome.

Before I elaborate on that, I want to say that I know there are people who will question the validity of the diagnosis and even disparage me for seeking it in the first place, and I’m sure there are others who will be moved to pity or sadness for me. But I am hopeful that there are more who will be supportive and encouraging of my journey, and possibly even a few who will be encouraged by me in some way.

You may be wondering what has brought me to this point in my life. (At least I hope you are, because I am getting ready to tell you anyway!)

It’s sort of ironic that my son was diagnosed with autism in December of 2004, but I didn’t really consider that it might apply to me until October 2010, when I attended a conference with Dr. Tony Attwood. During that session, he spent a significant portion of his time talking about girls and Asperger’s. As he described what might be the day in the life of a teenage girl with Asperger’s, I felt like he was describing my own life in vivid color. I didn’t realize until he was almost done that I was actually crying.

I went home and didn’t say anything to anyone right away about the experience, sort of pondering things in my heart, so to speak. When I did write up my notes from the conference, my husband read them and immediately asked if I thought I might have AS. We both felt this made a lot of sense, but I still wasn’t sure. My biggest question really had to do with the issue of nature versus nurture; i.e. could all of my differences and challenges be explained by the way I grew up, or was the answer more intrinsically related to how I am.

After tossing this idea around and around with my therapist and a few Aspie bloggers I connected with, I finally decided it would be best to get an evaluation with professionals who are experienced in this area, so I went to a nearby autism center.

Over the course of a few months, I met with two different psychologists and a psychiatrist at the center, all of whom agreed that I do qualify for a diagnosis of Asperger’s Syndrome (in addition to depression, currently in remission, and anxiety – both extremely common comorbid conditions for people on the spectrum, especially those diagnosed later in life).

It has been almost two months since the feedback session at the autism center, and I have begun to realize that receiving the diagnosis is not simply the end of the process of looking for an answer, but is really a beginning to the process of changing the way I view myself and seeing all the opportunities I have to make my life what I want it to be.

So many things that seemed completely out of reach in the past may now be possible if I take a different approach. Or I may decide that those things aren’t actually what I want, but are just what I thought I was supposed to want. Of course, there are many things that I don’t want to do, but have to because they are part of life, but at least I don’t have to beat myself up for finding them difficult.

Before hearing the diagnosis, I had only shared my thoughts about it in real life with my husband, my therapist, and two friends. Each of these conversations was incredibly difficult, primarily because of a huge fear of ridicule and/or rejection.

Since the diagnosis, I have told a few more people, including my boss and my son, and those encounters have gone fairly well. Because I write about autism and related topics on my blog, however, I knew that this new information would begin to color my posts and I feel it is worth the risk to share the information here in the hopes that I will find even more support and also that it may help someone else who is struggling.

In reflecting on my experiences as a blogger, I re-read my very first post, entitled Where to start?, and found it to be extremely revealing regarding aspects of my personality and also quite appropriate to how I feel at the beginning of this new part of my life. I hope you’ll indulge me if I re-post part of it here:

I feel like my whole life has been spent trying to figure out all the answers and the right way to do something before I even put the first two pieces together. In my head, I realize you have to put yourself out there and do the best you can, but the rest of me always tries to pull back to safety. So, although it may not seem like a big step to most people, I am starting this venture without having read up on all the technical aspects of blogging or even the social/etiquette rules of the blog world. I am going to learn as I go along.

If you’ve made it this far, I would like to say thank you for reading this very long and self-centered post. I appreciate all of those who have supported and encouraged me to this point and hope you all have a very Happy and Blessed New Year!

So, now it’s your turn. Questions? Comments?

I have to admit that I have been starting to get really stressed out about school starting up again. Between Michael’s own anxiety and my worries about how things will work out with a new teacher and a new set of expectations, my mind has been whirling.

I recently agreed to start participating in some blog tours and reviews through Kathy Carlton Willis Communications and received an email with this encouraging and timely article about praying for our kids as they go back to school. It was so encouraging, and I am glad to be able to share it with you here.

Back to School … Pray!

Love the Lord your God with all your heart, with all your soul, and with all your strength. You shall teach them diligently to your children, and shall talk of them when you sit in your house, when you walk by the way, when you lie down, and when you rise up.
Deuteronomy 6:5,7

Excitement’s in the air! Anticipation rises. It’s that time of year when the kids go back to school.

Who can forget watching your child go to “big school” for the first time? I remember those bittersweet moments as each of my four children kissed me good-bye. I always knew that day would arrive, but nothing prepared me for the moment.

Elementary school seemed to fly by and almost overnight they were in junior high and then high school. And in a blink of an eye, they were off to college. Where did the years go?

I learned early on that when my children were away from home, praying for them comforted me. By turning them over to God I experienced a calm peace. Year after year my prayers intensified, yet remained the same…

• Elementary School – Will he make a friend? Will he eat all his lunch, or just the cookies and chips? God, help him to love You with all his heart.
• Junior/Senior High –Will he make the right friends? Is he paying attention to the teacher? God, help him love You with all his soul.
• College – Will he make some forever friends? Is he making the right life decisions? God, help him to love You with all his strength.

Just as our children face challenges, we as moms face our own set of challenges…

• To pray over our children no matter where they are in life.
• To be on our knees for those God entrusted to us.
• To ultimately pray for each child to love Jesus with all his heart, soul, and mind!
• Finally, to let them know we are praying for them each day! What a blessing it is to pray for our children.

I ask you to take advantage of this new season too. Do you need a fresh start? Where are you in your relationship with God? In my Bible study, Reflecting Him – Living for Jesus and Loving It, I encourage you to find Jesus in your everyday activities. He is there for us 24 hours a day, and He wants to hear our everyday prayers!

Author Bio

CARLA MCDOUGAL is founder of Reflective Life Ministries headquartered in the Houston, Texas area. Her true passion for her Lord and Savior, Jesus Christ, shines brightly, whether she is speaking or writing. She shares experiences from her own life to encourage women to live every day for Him. God is sending Carla around the world to speak to women from all walks of life—those living in the best of circumstances to those who have hit rock bottom.

Carla’s book, Reflecting Him: Living for Jesus and Loving It, is a 10-week study that encourages you to open your eyes to God’s daily life lessons. The more you ask God to be in your life, the more you will recognize His hand on everything you do. For more information on a growing number of products from Reflective Life Ministries, and to see about booking Carla for an event or interview, go to www.reflectivelifeministries.org.

I don’t know about you, but I spent the first several days after hearing the diagnosis of autism frantically reading everything I could get my hands on, trying to figure out what I should be doing to help my son. I swung daily from feeling that there must be one perfect answer to the question to feeling like I should be hitting every area at once so as not to lose any more precious time.

I was blown away by the fact that the Birth-3 team thought 45 minutes of speech therapy and 45 minutes of occupational therapy a week was plenty. And even though the preschool program offered 12 hours a week in the classroom along with the therapy sessions, I still felt an intense pressure to do more.

So we did. We have tried a lot of different therapies, with a variety of outcomes. We have done music therapy, art therapy, occupational therapy, a listening program, speech therapy, sensory integration therapy, behavioral therapy, Floortime, psychotherapy, a special diet, supplements, and medication, to name a few. Some were effective and have stuck with us, while others likely did more to make me feel like I was doing something than they actually helped Michael.

I don’t pretend to have all (or even most) of the answers, especially since at times I still battle the same insecurities and fears that I always have, but here’s a few things I have learned along the way:

• Parenting is a marathon, not a sprint. Pace yourself, and don’t let every little issue become your whole life. The conversations about nursing versus bottle feeding that were so all-consuming when your child was an infant aren’t even on the radar when you are talking to the second grade teacher about spelling or math.
• Quantity is important, but quality is even more so. As much as some people would like you to believe you must do 40 hours of ABA a week, or 8 Floortime sessions a day, it is critical to give your child yourself, present with them, engaging with them however you can.
• Along those lines, nothing takes the place of getting on the floor and playing with your kid. For some people, this is natural, but for me it was easy to retreat to the computer and my books and focus on researching and learning to find the “right” answers. If I could go back, I would spend half that time just hanging out with Michael instead and really paying attention to what makes him light up with interest and curiosity.
• You have to pick your battles; that is, figure out what your top goals are and prioritize any therapies that addresses those issues. What skill or activity would make things better for your child and for your family? What would make them more functional and independent in their communication or daily life? Once you know what you want and what your child wants, you can make decisions about where therapy may fit in with those goals.

When it comes down to it, we are all imperfect people, raising imperfect children. We want to prepare them for life as best we can, to pass on our values and ideals, to let them know they are loved and to celebrate their uniqueness. We cry for them when things are difficult and rejoice with them when victories are won. We do the best we can at any given moment, and so do our kids, and that’s enough for me.

Note: This post was written for the Best of the Best, Edition 9: Therapy and Special Needs Kids.

As I reflect on the first half of the summer, I am overwhelmed (in a good way!) with how free from worry it has been so far. In the past, I have often dreaded the arrival of summer, with its lack of structure and my anxiety about the next school year. I am so thankful for a number of factors that have brought much more peace to this summer than to previous ones:

1. How well Michael has responded to the medication we started this spring. Notwithstanding a handful of difficult instances, he has been tremendously flexible and emotionally regulated.
2. Having the same babysitter and summer program (and even van driver) as last year.
3. Being able to attend therapy sessions on a more flexible schedule so Michael isn’t overloaded but doesn’t lose ground.
4. Being able to bring out the summer packet without Michael falling apart and completely refusing to do it.
5. Making fun trips to Hersheypark and Michael being tall enough to ride any roller coaster or ride he wants to.
6. The fact that we have a solid IEP with a good behavior plan in place, as well as a gifted evaluation scheduled for the fall.

I am also greatly excited about the opportunity to attend the National Autism Conference the first week of August. Between the fee for PA families being just $25 for the entire four days, my brother-in-law’s family allowing me to stay with them in State College, my boss allowing me to take the week off and Michael getting into the Children’s Institute taking place at the conference site, it has all worked out incredibly well.

There are a lot of great speakers coming, and I am especially looking forward to the seminars on motor planning and on adapted physical education, both topics with which I am not as familiar. For anyone who is interested, both handouts and video of some sessions will be available within the next few weeks.

Of course, there are always things I can find to worry about, but I am choosing to focus on how many wonderful things have been happening for our family.

What are you thankful for today?

This month, Thankful Thursday is being hosted by Spiritually Unequal Marriage.

Yes, this week I am thankful for a little yellow wristband that we got at Hersheypark.

Although we have been to the amusement park many times and even had season passes a few years, we had never taken advantage of the disability guest pass—until this Tuesday, that is.

When you request a pass, you get two things: a yellow Tyvek wristband worn by the disabled person and a small card used to obtain boarding times for the more popular rides. For those rides, the person manning the entrance to the line will write down a time on your card, and you can come back anytime after that to get on right away. For all other rides, you go directly to the exit and show them the wristband to gain admittance to the ride.

I had been hesitant about using this service, partly because I was worried about what people would think of us and partly because I didn’t want to teach Michael that he should expect preferential treatment because he has autism. Now that he is older and taller, however, he is primarily interested in rides that have much longer waiting times than he can tolerate.

We had a psychiatric appointment on Tuesday before heading over to the park, and the nurse practitioner encouraged me to go ahead and get the pass. He has plenty of opportunities to learn to wait, she told me, plus he really shouldn’t be standing around in the heat and humidity with the medication he is on.

And so we did.

The staff at the park couldn’t have been nicer to us. At one point, we went back for a second ride on one of the roller coasters. I let Michael ride by himself because I was too hot and didn’t feel like riding it again. They not only helped make sure his belt was tight enough, but one of the young men even offered me a cup of cold water while I waited. So thoughtful!

I didn’t notice if any of the other guests were upset by us being let onto rides without waiting in the regular lines. I only heard one person ask about it, and the staff person just said it was because he had a wristband. I did have one man ask me if there was a fast pass option he had missed, but he seemed understanding when I explained about the disability pass.

Although I realize not everyone would agree with my decision to use the pass or think it is fair to others, I do plan to continue getting the wristband for Michael when we take him to the park. I have never had a more enjoyable time with him—we walked around and went on rides for over four hours without a single complaint or outburst, which has to be a record for him!

In a world where “special needs” usually means behavior plans and IEP goals and lots of therapy appointments, I am grateful for a place where it simply means Michael gets to feel like he is special.

This month, Thankful Thursday is being hosted by Spiritually Unequal Marriage.

As the school year draws to a close, I have been reflecting on how incredibly thankful I am for the amazing team of professionals that has been supporting Michael (& me!) throughout second grade.

When Michael’s TSS Becky left the job to attend nursing school in October, we were so fortunate to have Annika start working with him. Her patience, persistence and creativity have been a great blessing to us, and she has worked incredibly hard to adapt her natural style to best suit Michael’s needs.

Michael’s BSC (who supervises the TSS) has been working with Michael since he was three years old and has been a constant support and advocate for him.

The school team includes a host of characters: the special ed supervisor, the principal, the classroom teacher, the SLP, the OT and the autism consultant. That doesn’t even include people such as the specials teachers, the guidance counselor and all of the other school staff who interact with Michael.

And, of course, there’s the learning support teacher, who is Michael’s case manager and does an incredible amount of work keeping everything going as smoothly as possible.

Outside of school, we have a fantastic private OT, a dedicated psychologist and a wonderful psychiatric nurse practitioner. I can’t tell you how much their insights have helped me over the past year.

I know this litany of names doesn’t mean much to you, and I feel sort of like the lady on Romper Room at the end of the show ~ I see Diane and Emily and Jackie and Paulina and Mandy. I see Robert and Darren and Christina and Melinda and Jeanne ~ anyway, thank you for indulging my personal reflection today.

For those of you who have no idea what Romper Room was (or probably even more for those of you who do), here’s a clip of the goodbye scene with the Magic Mirror. I remember waiting eagerly to see if my name would be mentioned, although I don’t recall that I ever heard it.

This month, Thankful Thursday is being hosted by Grace Alone….

This week I have been incredibly grateful for acts of kindness that have been done for me. Even a simple gesture of understanding can be so powerful.

For instance, I got a call Tuesday morning that my son’s TSS was sick and wouldn’t be at school that day. I brought Michael to school prepared to walk him up to the classroom to help him get settled and hopefully avoid any meltdowns that might occur during the transition to the school day.

When we arrived at school, I was surprised to find his case manager waiting at the door for him to do that very thing! It was such a thoughtful gesture and really started my day off on a good note.

Later that same day, I went to the periodontist for a surgical procedure. Upon arriving, I was greeted at the desk by the nurse, who took me back to the room immediately and started out by letting me know that they already had my prescriptions written out and that they were all for liquid medicines.

Again, this is such a small detail, but it made me feel so cared for not to have to make the request, explain why it is needed and then remind them again later to make sure they were done correctly. It was nice to have one less thing to worry about!

So, if you are ever wondering whether that small gesture of kindness would really matter, be assured that you never know the impact it will have on someone. As a friend of mine likes to quote from Plato, “Be kind, for everyone you meet is fighting a hard battle.”

This month, Thankful Thursday is being hosted by Grace Alone….

Over the last few months, I have become less and less attached to the name of my blog, Another Piece of the Puzzle. There are several reasons for this, although it may just be that I am in need of a change.

One reason for this shift is that it has come to my attention that the use of the puzzle image in connection with autism is disliked and even considered offensive by some. While it has never been my intention to offend or to minimize anyone’s existence, I also would not wish anyone to feel excluded by my actions. I have written previously about my perception that life itself is the puzzle, and autism is just one part of it, but that is difficult to convey via a simple blog title.

Another major reason is that I find I have been moving away from the instinctive feeling that there must always be a right answer to every question. In essence, that is what the image of a puzzle represented for me – the idea that if I can just find the correct response for every challenge and the right way to control each area of my life, I will get the final picture right.

Forgive me for being so melodramatic, but I am coming to understand that the final picture will always be in flux, as every day and every situation has the opportunity to change our direction, whether in big ways or small.

So then, the question became which direction I am going now. I have written mostly about books lately, although a number of those are related to autism. I have not written much about my personal life, but I plan to return to this more in the future. And, of course, I am just as passionate as ever about sharing anything I find helpful in understanding autism.

In the end, I have decided to move my blog to a domain with my own name (http://trishdoerrler.com) and call it In So Many Words. All the content has been moved over, although the appearance is still somewhat spartan.

I am in the process of working out all the remaining logistics for the move. I have redirected my Feedburner feed and Google Friend Connect to the new URL, which should cover most of my subscribers. I will post once more on the original site and then later redirect it to this one. If anyone has a link to my blog on their blogroll or anything of that nature, I would greatly appreciate your updating it to the new blog title and URL.

Thank you all for reading and I hope you will continue to do so!

I have what some people might consider to be an inordinate need for alone time, and by this I mean being alone for significant periods of time with no one wanting or needing my attention or help.

Simply going into a room and shutting the door does not lift the weight of the possibility that I will be called upon at any moment, or even just disturbed by other activities going on in the house. To truly relax, I need to be completely alone.

This doesn’t mean that I don’t love my husband and son and want to spend time interacting and taking care of them, because I most certainly do (even though it might not appear that way when I am feeling in need of some solitude).

And I don’t believe it is because I have a child with special needs, although that does add its own challenges to the mix. I have always been this way, spending a lot of time alone reading and thinking, and although I enjoy having friends and being involved in various endeavors, my threshold for social interaction seems to be lower than for many people I have observed.

This might seem like an insignificant desire to many people, and it is certainly not something that is a visible need such as food, clothing or shelter. But having the opportunity for alone time withheld is as painful to me as being quarantined would be to a person on the other end of the socializing spectrum.

I am extremely fortunate that my husband is so accepting and supportive of me in every way, including recognizing this need and helping to provide ways for me to have it met.

• For instance, he works full-time and I work a part-time job which allows me an hour or two of uninterrupted time almost every weekday. When I tried to increase my hours about a year ago, I realized after only a few weeks that I wasn’t handling things as well and needed to go back to my original schedule.
• At some point each week, he will usually take Michael out of the house for a few hours to run errands or do something fun. This doesn’t always work out due to schedules or how Michael is doing, but he makes a point to try.
• Occasionally, he will even take Michael on a road trip, usually to visit his parents a couple of hours away. This used to be once or twice a year but has been almost monthly over the last year, as my mother-in-law has Alzeheimer’s and Bob wants to spend time with her and also give my father-in-law a break of his own.

In fact, as I write this, I am sitting in a quiet house, enjoying the knowledge that I can make my own schedule for the entire day and sleep without being awakened by middle of the night bathroom trips or early morning cartoons. It is truly a blessing to me and one of the best gifts I could ever get.

I’m curious if you have ever thought about what you need to relax or recharge. It may be completely different from what I need, but that’s okay.

I think the most important thing is to figure out what you need and then accept it without feeling guilty. Guilt about needing time away from everyone kept me from taking full advantage of the opportunities I had for many years, and freeing myself to simply accept the gift I was being given has been a wonderful thing.

So, what do *you* need?

As I was sharing a couple of Michael stories with a coworker this morning, I realized that I should be writing these down so I will be able to remember them better. Just the other day, Michael asked for syrup on his pancakes and I realized that he is pronouncing the word correctly after years of saying “sir-ee-up” instead. It made me long for the adorable cuteness of the old way.

So, here’s a couple of moments from the last few days:

Time Gets Older
Just before the end of last year, Bob & Michael were talking about 2010 ending and 2011 beginning. Michael became somewhat sad and said that we should send an email to 2010 to say goodbye.

Then on New Year’s Day, Michael came in our room as soon as he woke up. He was close to tears as he told me that he wasn’t sure he could make a new friend because he is very shy.

I quickly realized he was talking about the new year, and we went downstairs to talk (and to let Daddy sleep in a bit). I wasn’t sure exactly what to say until I thought about how much Michael enjoys looking forward to his birthday.

So I asked him if he could think about it like time just had a birthday and got a year older. How does he feel when he has a birthday and is another year older? Luckily, he loved that idea and, just like that, the sadness was gone.

Hugging the School
This morning as Michael was getting ready to return to school from his winter break, he said that he was going to hug everyone in his class.

I was relieved that he was happy about going back to school, but concerned because going up and hugging people often and usually without asking first has definitely been an issue (partly sensory and partly social comprehension). So I suggested that he needs to ask first.

Later on, he said that he was planning to hug everyone in the whole school, and I asked how he thought everyone would feel about that. He realized that it wouldn’t really be feasible and that not everyone would appreciate it, so he decided he would just hug the school when he got there.

Sure enough, when I walked him to the door, he went over and hugged the corner of the building before walking in. The principal was a bit bemused by this until I explained the alternative scenario, and then he was happy to see that Michael had found an acceptable way to express his feelings about returning to school.

Although I wish that things weren’t always so difficult for him to understand, I am thankful for his sweet spirit and loving heart. And the same lack of social awareness that causes him pain with regard to joining in with the other kids also gives him the freedom to express himself in ways that others might regard as odd or different.

Another thing I did this morning was to put up a 2011 calendar that I was given at work, and the quote for January reads:

Dare to be who you are, and learn to resign with good grace all that you are not and to believe in your own individuality.

I think those are great words for many of us as we start out a new year.