Giving up or Giving in?

August already? Summers just fly by in Wisconsin. We have kept busy all summer, and have lots of memories recorded on film to prove it! Noah has enjoyed playing on the baseball team, has gone to cub scout camp, has traveled Wisconsin on a few family camp trips, and has celebrated his 11th birthday in July.

We "gave in" and finally agreed to increase the Risperidone medication in June. After many trials of numerous other medications, I discovered yet again, that the Risperidone is the ONLY medication that decreases the self-abusive behavior. I hesitated to increase it due to the side effect related to weight gain, which is exactly what is happening now. The pediatrician is not concerned about the weight gain because Noah is growing in height as well. I, on the other hand, am very concerned about the weight. Noah now weighs more than I do, and is only a few inches shorter than me. His tummy has bloated out due to the medication. I have increased his fiber and protein intake, hoping that he will feel full for longer periods of time. I hope this will work, especially when he starts back to school in September.

I have noticed Noah has also been demonstrating more anxiety about "unknown" future events over the last year. This year, he really perseverated on the toys he listed on his birthday list. He needed to know that the toys would be his, and he needed to know WHO was giving him WHICH toy and WHEN. When relatives would call and ask what he wanted for his birthday, he requested a particular toy from each person. Then he would pair that person with that toy each time he spoke about his upcoming birthday. Tantrums occurred when he was told that his gifts were a "surprise".

Finally, I "gave up" and just stated, "Yes, I am getting you Dug the dog from Up, and you will open your gift when you get back from camp." Then he was fine. Children and adults on the autism spectrum do not like surprises. They need to know what is going to happen next. This brings comfort, and eases any anxiety they may be experiencing. Words or phrases such as "Wait", "Surprise", "Maybe", "I don't know", and "Might" are very difficult to comprehend. They are too abstract, and do not predict the exact future.


Am I "giving up", or "giving in" when I increase medication that I disagree with, or go against social rules that state that birthday gifts should be a surprise? Maybe not. In life there are times when you have to put aside what you want and choose to do what is best for the other person. I would love for Noah to be able to stay calm and stop the self-abuse without medication, and I would love for him to be able to enjoy a "surprise" once in a while. But that is not best for NOAH. He needs his medication, and he needs to know what will happen in his future. As long as his needs are being met, I will assume that my decisions are sound. I just wish it were easier.

One Step Forward, Two Steps Back

These past few weeks have been some of our most difficult. We chose to see a pediatrician to inquire about a medication change for Noah to stop some of his self abusive behavior. He had also started hitting school personnel, therapists, and myself. Because of the medication he is already taking, Noah has gained approximately 30 pounds, and is now bigger and stronger. This scares me.

The medication the doctor chose to add with the one Noah already takes did calm Noah during the first six to seven hours after it was taken. Noah was coming home from school with wonderful behavioral reports. But when it wore off at home, the tantrums grew in duration and intensity. When I complained, the doctor recommended a third medication to help with the side effects of the new, second medication. WHAT????? Doesn't it make more sense to eliminate the medication? Am I crazy to think that way?? What am I not getting?

Today, Noah fell apart about an hour earlier than he normally does. Unfortunately, that means he was in school. The other children and some parents who were visiting school witnessed one of his meltdowns. I have tried so hard to isolate these behaviors from others. The last thing I need added to the mix is to have Noah's peers fear him in any way, or to have parents forbid their own child to be near mine. Noah has never hurt a peer, and I am absolutely certain that he would never intentionally hurt anyone. This community has embraced Noah in ways I cannot describe, and I am so very thankful for that.

It is difficult for me to describe what I am going through with Noah. Friends are supportive, and compliment my parenting skills and patience. However, they do not see what goes on behind the closed doors of my home. I try to hide the daily tears and emotional pain that occurs when I helplessly watch my child continually pound his head against the floor or the wall or when he pinches himself, or pulls his own hair. I try to hide the insecurity I feel as an autism consultant who doesn't have the answers for how to help her OWN child. I am constantly analyzing every situation, looking for a reason behind these tantrums. I cannot figure it out, and it terrifies me!

I believe every behavior happens for a reason. Children on the spectrum are communicating a want or a need with every behavior they exhibit. I am frustrated with how long it is taking me to figure out what need or want Noah is communicating. In the meantime, the tantrums are increasing. I hope I find the answer soon.

Thanks for all the encouraging statements and compliments. I really do appreciate them. I will use the positive remarks to motivate me to continue my journey to find the answers.

Gliding at a Slow, Steady Pace

The small, often unnoticed, and seemingly insignificant accomplishments are the ones we celebrate the most in our household. Noah has his own time-line for progress, which often does not match the fast-paced world. As he grows older, the gap between him and his peers has also grown. I expected this, but it doesn't make it any easier to witness.

This weekend, we embraced another opportunity for growth and progress. We went ice skating at a small lake located near our house. Winterfest in Kohler was in full swing, and there were a number of people on the lake, although it was not overly crowded. The weather conditions were perfect.

Noah was skeptical at first, and needed adults on each side to hold him up. Placing all of his 112 pound frame onto the arms of Brian and one of our in-home therapists, he slowly entered the skating area. He did not allow them to let go, panicking each time one of the adults even suggested trying on his own. Needless to say, both adults were pretty sore the next day!

On a positive note, when we returned on Sunday, Noah was courageous enough to try a few glides on his own without the help of an adult on each arm. His smile, and proud exclamation, "I did it!" just melted my heart. I could not be prouder.




Small, baby steps. Slow, steady progress. These are the things that get celebrated in our lives, daily. Noah is not a child that will ever make leaps and bounds in a short amount of time. Encouraging and praising those simple accomplishments are what keep him going. His smiles, and perseverence are what keep me going. I will continue to embrace every small step.....

Hallmark Memories and Epoxy

There is a tradition in my family that started when I was a young girl. Every Christmas, the children receive a new ornament. The ornament is usually an accurate representation of a character, toy, or other object loved by the child receiving it.

In December, Noah was given the chance to hang his own special ornaments he has received over the last ten years on the tree. The ornaments, however, proved to be too tempting and he began to play with some. Between he and his sister, seven ornaments broke this season. I placed them all aside, while reminding the children not to play with any more ornaments.

As Brian used epoxy to fix the ornaments this past weekend before putting them away for another 11 months, I began to think of all the memories each ornament represented to me. My childhood is remembered each time I look at ornaments from the 1970's and the 1980's. My children's infant, toddler, and preschool years are represented in the beautiful Hallmark ornaments I carefully wrap and re-place into their original boxes when the tree comes down every January. Noah's enthusiasm over the movie Toy Story when he was 2 years old is represented in the ornament with Woody, and his obsession with Blue's Clues when he was 4 is remembered every time I look at the ornament with Blue riding on a Sled.

No matter how many times the precious ornaments fall, or break, my memories of the past years will not fade. I am already looking forward to unwrapping the memorable ornaments, and seeing the delight on the children's faces when we add the new ornaments from this past Christmas to the tree in December 2010.

Thanks Mom and Dad for starting this tradition, and especially for continuing it with your grandchildren!! I love you!