Nicholas: A Good Week

This week has been a good week. What a blessing! Makes me wonder if I was taking for granted all the other “good weeks” that we had…

A friend asked if “one of the boys has had a set back. I thought they were all doing so well.” Yes, the boys were all doing well. I am not sure why Nick is regressing, or seems to be regressing.

One suspicion I have is teenage turmoil. How hard is it for a teen without autism to maneuver high school and puberty? I recall tough times. I have seen Nick’s three older brothers, with and without autism, have tremendous struggles in transitions, friendships, and work loads.

Nick is a teen with autism. The autism effects his expressive and receptive language. Nick thinks in pictures, so his brain is firing like crazy to interpret speech and sound. Most kids his age may not have the patience to give Nick time to process what they say.

I brought up this issue at Nick’s IEP meeting about two weeks ago. His speech pathologist recommends a program called Best Buddies. The psychologist and case manager said that they’d sign him up. I haven’t heard anything so far, so tomorrow, Monday, I’ll be calling the school to see what the status is. In this program NT (neuro-typical) kids signs up to befriend special needs kids, and they meet the kids for several social outings.

I am hopeful that the Best Buddies will help Nick through this time. However, this is one small piece that may fit the “puzzle” of autism.

I still am trying to figure out if there are any other issues at hand, but here’s to Nick’s perseverance!

photo credit:http://www.flickr.com/photos/sean-b/

Sleuthing Autism: What’s The Problem?

“My son is having a much easier time talking today that he has had all week. I’m still trying to figure out how an autistic mind works. Some days, he can barely get a sentence out. Other days, he can talk with just a little effort. That was my post yesterday on Facebook. Last Saturday I posted, “My son had a good day. Yea.”

For the last four weeks Nick has been having a very difficult time with life. A few times he’s been very close to tears. Other times, he has been downright angry. One Wednesday, he stammered, “I can barely talk.” That was all he could say.
I am quite baffled. I have no answers for my son. This is the child who talked for an hour once to my oldest son’s friend back in the Fall.
Nick is also a very resilient child. He has a quiet but happy spirit. He is not one to hold a grudge or be in a slump for long. Lately, he seems to be obsessing more frequently. Again, something he usually does not do too often.
The most confusing part is that his behavior and mood swing are not consistent. As parents, we are encouraging Nick to keep talking and keep hope.
I feel stupid, asking a teen with autism to talk. I’m asking him to do the one thing that is hardest for anyone with autism to do: socialize and talk. Yea, no problem… NOT.
So I’m tracking the ups and downs of Nick, trying to find if there is a reason. Could he be staying on the gluten free diet? Is he not taking his supplements? Are other kids contributing to the problem? Is this just a typical stage in a teen’s life?
I wish I could hire Sherlock Holmes!

Too Much On Your Plate?


Multi-task. Going 24/7. Not enough time in the day. Too much to do.

It’s called adulthood. Responsibilities demand our attention. Well, that is why I’m not writing as frequently as I’d like. I’m pulled in so many directions, that my brain pretends to be more flexible than a rubber band. I have a lot of energy, but it seems I don’t get anything done. Frustrating.

This happens to everyone, not just parents of autistic teens. I see many moms–crazed and dazed. I ask them how they’re doing, and the response is usually similar, “I’m running.”

A friend wrote to me today, saying that she was making mistakes because she had “too much on her plate”. I can totally relate. I replied that we must be at the same feast. My friend appreciated my understanding her.

We’re all busy, but a positive attitude helps. So, yes, my friend and I are at this “busy” feast. I can’t wait until dessert is served. I am up for a good challenge of dealing with too much chocolate on my plate!

photo credit:http://www.flickr.com/photos/jennedwards/

Twelve Days of Christmas Wrap Up

How we celebrate the 12 Days of Christmas varies. Early on each boy received his own present most days. When they were younger, it was easy to find little cars or toys. Now that they are older, their taste has matured. So this year the boys didn’t get individual gifts. They enjoyed a single gift.

As the year progresses, events happen that inspire a gift. For example, living in the Southwest, the air is dry, and the boys are always in need to chap stick. So I bought a 4-pack of chap stick. That fit into Day 1 box. It’s not exactly a “fun” present, but the boys were happy to each have his own.
Here is another example. I frequently purchase batteries. It never fails when I need a battery, there is none to be found. The boys constantly are raiding the supply for their devices. As a result, I purchased a pack of batteries so that they each had their own stash. The pack fit in the Day 2 box, so that was the gift of Day 2.
Day 3 was homemade fudge. I don’t make fudge often, so this was a special treat. I had written “fudge” on a slip of paper and put that in the box. The boys had fun searching the kitchen for it.
Day 4 was a family trip to the local botanical gardens. The boys thoroughly enjoyed the first hour of strolling through the paths of local flora and fauna. We found herbs that we wanted to try growing at home. The second hour was not as enjoyable as hungry stomachs rumbled despite the snacks brought along. We found a local eatery. Peace resumed.
Day 5 was a 4 pack of Starbucks. Simple splurge. Day 5 also included Christmas candy–dark chocolate. I picked this up at half price after Christmas!
Day 6 was an organic blend of apple cider for a new “coffee” machine that St. Nick brought the family. The boys’ diet restricts the purchase of regular apple cider, so this was a fun treat.
Day 7 was lunch out to a restaurant. Since we don’t travel much, we try to find restaurants that have an authentic cultural flair. This time we ventured into an Italian restaurant run by a first generation Italian who uses his mother and grandmother’s recipes from Italy. What a difference from the Italian restaurant chains! The music and decor moved us to Italy for a few hours.
Day 8 was a movie. The boys enjoyed War Horse.
Day 9 was a CD and DVD.
Day 10 was a new sport game for the game system. It’s one of the interactive games where the boys get to challenge each other, they have to physically move!!! No more sitting on the couch when they play. Even Dad got involved and played!!!
Day 11 was another DVD.
Day 12 was lunch at a Persian restaurant. We again had fun exploring new tastes and new foods.
I already have a few gifts for next year’s 12 Days. I’ve purchased a few things at 50-70% off during the after-Christmas sales. I’ll also start thinking what new family experiences to plan for next year.

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.