The Twelfth Day of Christmas

We started the Twelve Days of Christmas early this year. We started on Christmas Eve simply because we went to Mass at 4pm, so we had celebrated the birth of Christ. It seemed fitting to open the first present after dinner.

The boys were very excited. Since we have four boys at home, we determined that they'll each open one present, starting with the youngest. So each boy will have three turns. They agreed whole heartedly.

I will write a separate entry on what the gifts were in a few days as I've been asked what gifts to I get and how do I determine what I get. I'll address the latter issue.

The gifts are usually determined for me--out of necessity. Some are determined out of cost--what is financially feasible. Of course, I try to get a few fun items--something the boys really want.

This year the items assembled easily, all except the last one. I am stumped by the 12th Day. What to get? The box remains empty. It beckons me. I have about 24 hours to figure something out. Tradition says that the last gift is the biggest gift. The box itself IS the biggest box. Yes, I actually have a box for each day. They are clearly decorated and labelled what each day the "true love brings". Side note: The boxes fit into each other for easy storage. Very convenient!

So I am still perplexed about what the 12th day should bring. Yes, I could get 12 drummers drumming. Or a drum set. One of my boys really would love that as he plays percussion and drums in the high school band. I can't fit that in the box. I could put a picture of the drum set in the box. Are drums on sale somewhere? The smallest catch is that I wouldn't survive a drum set in the house. Or in the garage. Ummm.

This is where the 12 Days make me really think. I do get silly sometimes. I also get creative. That's the fun part of this. I put myself in the giving. These aren't just things. These gifts are gathered with a lot of love and thought.

Well, I gotta get thinking about this... Merry Christmas Day 9 (although we celebrated Day 10).

Photo credit: jenny makes stuff

Fun and Frivolous Results

Last Saturday morning, as the boys were getting breakfast fare out, I told them that they needed to serve cake first. Their reactions were quite different from what I expected. Ryan's eyes opened wide in disbelief. Cam paused for the brief moment and then wrapped his arms around me and said, "I love you, Mom." Nick observed his brothers in silence and moved the cake to the table.

I expected the boys to be surprised; I also expected some confusion or hesitation. Usually, my kids follow a black and white mode. The schedule. They don't vary much. I really thought I'd cause a commotion. Nope. They rode the strange tide as if they were used to unpredictable situations.

Breakfast started off with cake followed by fruit, muffins, and turkey. Lunch was left overs. They had already guessed that eggs would be a part of dinner. Of course, they wanted another round of dessert.

So my teens with autism are showing flexibility and adaptability!

Fun and Frivolous

I made a cake last Sunday, just for the fun of it. No birthday. No special occasion.

Confusion.

The boys didn't know what to say. They looked perplexed and confused. They didn't understand that it was ok to make a cake.

That made me think about how much we do because there is a reason. For kids with autism, a schedule is a dictate for life. NOTHING happens unless there is a reason. Life is black and white. Gray is cause for confusion. While a schedule can make life easier, it can make life bland. I want my sons to be able to enjoy life, not just "have to do" things.

During this Advent Season, this is one lesson I will teach. Spontaneity. It's ok to do things without planning. Autistic kids have a difficult time if things are not predictable, but life doesn't happen always according to a plan (does it ever?). Nonetheless, life can still be enjoyed.

My plan for tomorrow is to have our meals backwards. Dessert for breakfast. I think that will be a pleasant surprise. It might totally throw their world upside down. However, I don't think they will argue. Much. They might even paraphrase Bill Cosby about chocolate cake for breakfast--it has eggs, milk, wheat--a great breakfast! We'll end with eggs for dinner.

I never knew baking a cake would cause such a stir!

Cheering For A Normal Conversation!

"Our team scored 24, and their team earned 41."

Nick was not happy that his high school football team lost in the playoffs. Nick was discussing the game with his grandpa last weekend. I was right next to my dad, so I listened with interest. Nick had started the conversation which intrigued me. It's always an adventure when he talks.

I immediately noticed the sentence structure and word choice. Usually, Nick uses very simple sentences and repeated words. This time he had used different verbs and correct tense. WOW. He also used a compound sentence. Yippee. His speech continued to show incredible progress since his chelation over the summer.

Ok. So most people would be bored with the grammar of my son's speech, but this is a kid with autism whose speech is extremely limited. He can be difficult to understand. The other person must exercise patience to allow Nick the processing time needed between his sentences. Most of the time he uses related words vs the correct phrase.

For example, most people would not dare to ask a person, "How many pounds are you?" The message is received, but it's not normal to ask using those words. The question, "How much do you weigh?" would be normal question to not ask. Nick was using correct terms, not related terms. The correct tenses and structure are cause for applause too. Nick was easy to understand. THAT IS A FIRST. (Whether that question should be asked at all is another obstacle to autism--knowing when not to ask certain questions.)

Nick finished the five minute conversation by saying that he'll cheer for his football team next year. He is not going to give up on his team. Likewise, I'll continue to root for Nick's continued speech improvements. GO, NICK!

Photo credit: ElvertBarnes

Chelation Summary

Chelation is highly controversial. I didn't like the idea. My sister (critical care nurse) and brother (chemist) warned me not to do it. The research I did several years ago highlighted kidney and liver damage, even death. The cost was prohibitive.

We tried other methods to help the boys' health, but nothing was removing the metals in which they constantly tested high: aluminum, mercury, lead, arsenic, uranium, are but a few.

In July my husband and I decided we would try it with a very careful eye on the boys. Nothing outrageous happened. We were encouraged. Within a few weeks, Ryan and Nick were talking more. Within the next few months both were much more active in school. Class presentations, dances, even dating!

Would I recommend chelation? Yes, but with absolute caution and after all other methods were exhausted. It is very expensive, and I can't deny that I'm putting meds in my kids. Consequently, we are not continuing chelation at this point. We are happy with the results thus far.

To see actual progress details and dates, please read the blog entries in August, Sept, and Oct.

Amazed and Thankful

Both Ryan and Nick went to the Homecoming Dance, and they both had fun. I am amazed that they wanted to go. I am thankful that they could go together with friends. They are still quite shy and quiet in most circumstances, yet they are courageous enough to keep trying. I wonder how many times they felt like quitting. I have often thought of the kids who walk away because they don't understand my boys. Then I think of my boys and how they felt when left alone.

I can't get into their brains. I have asked how they think or what they think. Quite often, they can't express their thoughts.

I remember when Ryan was four years old, and he couldn't talk. He couldn't say, "I love you." He didn't want to be hugged or touched. The walls in my house had dents from him leaning back to avoid hugs. At that time I had no idea he had sensory issues.

When Nick was two, he could say, "I love you," but it was one word at a time with long pauses between the words. "I"... "love"... "you". He had not progressed at all when he turned three.

Now I see them interacting with peers. Many classmates are patient with Nick and Ryan; many are not. I still can't help but be amazed and encouraged by my own kids--teens with autism--not giving up.

I am very thankful for my heroes.

Chelation Leads to a Class Presentation!

It's been three months since the boys have had their four IVs of chelation. We have seen much progress in their socialization. It's even better when people outside of our family notice. We received an email from Nick's biology teacher stating how well Nick did on a presentation.

Wait!

Nick gave a presentation? YEP. He spoke in front of his class. This was not a requirement. This was for extra credit. So Nick didn't HAVE TO do this presentation. He WANTED to do this. Nick spent a week working on this project about food, specifically watermelon.

Here is what his teacher emailed us:

Hi Mr and Mrs Johnson,

I just wanted you to know that Nick did a fantastic job presenting his project today. This was over and above what was required, but it was for extra credit--as well as bringing the watermelon for the class to sample.

He works so hard in my class. I wish I had 100 more of him to teach. I am glad I have the pleasure of having your boys to teach.

Ron S.

So here's to continued success and progress!