A Teen with Autism

Happy Monday everyone! I hope that you are all enjoying better weather than what we have been having here in good ole Minnesota: leaded skies, wintry mix and snowy ground as far as the eye can see… Since I am shut in for all intents and purposes, instead of working in my yard as I would normally at this time of year, I will continue my musings about autism… Let’s continue the celebration ☺ Autism Month only comes once a year officially but it is a yearlong occurrence for some of us! 

For today: What is the difference between a neuro-typical teen and a teen with autism?

After observing Ben for the past 17 years and 10 and 1/2 months, I would say it is the intensity of their feelings, which would be best described as… nuclear, shall we say. 

Yes, that is a good term for them. I tend to eschew a teenage autism tantrum as much as the UN tries to avoid and pacify tensions between countries holding nuclear power. Am I being dramatic? No, just trying to paint a vivid description of what it’s like to live with a teenager with autism. I only have frustrating words to do so. And posting a video would be so tacky ☺

Ben lacks the verbal sophistication that would enable him to express the depth and breadth of what he feels and wants so desperately to communicate. Sometimes he resorts to borrowing from movies (Disney is well quoted at our house!) to attempt to say what he needs to. But when he fails to make himself heard, that’s when all heck can break lose. A situation that I try to avoid at all costs.

Sometimes I cannot avoid a melt down. It’s alright if we are home. We can ride the wave. It can last anywhere from 10 minutes to a whole day L Bummer… But it’s when we are out and about that it really stinks and people really start to wonder if we are being abusive to our kid or well… other stuff… I’ve been down that road and I don’t care to reminisce!

So most times when we go out I wear a shirt with this design on it:

And Ben wears this shirt:

So life with Ben can intense and hard, but that’s what makes it interesting! We most certainly never get bored! Keith and I always look at each other and say: “Never a dull moment!”  (Because let’s not forget, we also thought it would be a good idea to have our kids really close together ☺)

I used to feel sorry for our girls, but I don’t anymore. It is making them more charitable beings to have Ben in their lives. They love him and he loves them and that’s that ☺ Does it mean that we now spend our days blissfully singing “When There’s Love at Home” around the house!? NO! But I know we love each other unconditionally, even when things get rough. And for now, it will have to do.

               Hilton Head Island, March 2010: Angelique 12, Camille, 15, Benjamin, 14

And another installment of a Kingsbury family history, written in 2008:

The Beginning of  Ben’s Trials

August 1996 to end of April 1997

           

              So we started our new life in Pennsylvania, in our little house on Bridge Street in Bethlehem. I decorated it and we were so happy. I got pregnant again in August 1996. I didn’t care if it was a boy or a girl because we already had one of each. But Ben should hurry up and walk already, I couldn’t continue to cart him around on my hip like that if I was pregnant again! Camille was happy to become a big sister again and I signed her up for preschool so she could go and learn even more away from me.  Ben continued to grow “funnier and funnier” for lack of better terms.

I was called as Sunbeams teacher in Primary; working with the three year olds for two hours every Sunday wasn’t much of a break from my regular weekly life but I learned even more about child development during that year of Church service and I learned so many Primary songs! ☺

Ben  was a happy go lucky kid but in such a different way than his sister and the other children I was working with at Church. I just could not pinpoint what the difference was. He just seemed “behind” to me. But he laughed a lot and seemed to keep doing well at his physical check ups. And he was so cute with his big porcelain blue eyes and his light blonde hair.

Benjamin finally decided to walk at seventeen months. Ah, what a relief, but it was late, in my book. Well, at least the new baby wasn’t here yet, right? We still had six months to go, if they had been spaced the same as Ben and Camie, the new baby would have been here already. Okay, now on to the next hurdle: weaning Benjamin.

Yes, you read right, Benjamin was still nursing! Every time I tried to stop nursing him, World War III seemed to ensue. It was very upsetting to all in the household. So I continued, to the dismay of my husband and a few friends, and my own. My son was tough.

Finally on his eighteen month birthday, I looked at him square in the face and said: “No more, Benjamin, no more nursing.” I don’t know if he understood. But I just stopped cold turkey. Poor little guy. Poor me. It hurt, physically and mentally, but I was four months along in my pregnancy once again... It was more than high time to make the transition.

 

 Ben wasn’t learning to speak well at all and a pediatrician had told us that in a bilingual household one parent must stick to one language and the other to the other language. So I should speak exclusively French and Keith, English. I just couldn’t do it, we decided to stick to English. I did stop speaking French and focused all my efforts on cramming as much English into little Ben. That is why amazing Camille who can learn all things doesn’t know French. My kids do not speak French because I did not speak it to them. We focused on English so that Ben could pick it up, that is what I thought was best for my family and my son. Still Ben didn’t speak…

 

Forgiveness is a truly a wonder. And Heavenly Father’s good graces are magnificent. As I write this, it has been almost thirteen years since the Husky dog bite incident. And I still marvel at how wonderfully it all unfolded. After countless letters sent to my parents between July 1995 and November 1996, keeping them abreast of the progress of their grandchildren, – I didn’t want to deprive my children of growing up without grandparents–, I felt the barriers separating us fall little by little.

By some miracle, I must have swallowed all guile and hurt and my parents came to visit us in Pennsylvania in November 1996! Keith and I went to the Washington DC Temple before their visit and we felt that all would be well and it was.

As a new engineer with his company Keith was to travel for two months to Indonesia from February to April 1997. I would be pretty far along in the pregnancy then and my mom offered to come stay with me and the kids to help.

Isn’t our God a God of miracles? Who would have thought that would even have happened after Camille’s accident eighteen months prior? Doctrine and Covenants 64:10 reads: “I, the Lord will forgive whom I will forgive, but of you it is required to forgive all men.”

Keith was only allowed to call once a week, for a few minutes at a time, so basically I knew he was still alive... The kids were still so young and very active, I was pretty advanced in the pregnancy and I didn’t know many people in Pennsylvania.

But despite the difficulty of Keith being gone, we had a good time with my mom, going to the park, Chuck E Cheese or playing in the yard. Those were the calm days before the storm but away in Indonesia, Keith could already feel it brewing, spending many nights fretting and worrying over Ben. An anxiety would seize him, something he couldn’t explain, something I could not either. Other than run of the mill colds and ear infections nothing had happened to Ben during his absence. Except for the nightly or early morning 2 a. m. wake up calls he still kept for us, screaming bloody murder as if some ghoulish nightmare was snatching him away from the safe arms of Morpheus.

What on Earth could cause this? It would still be a few months before we could found out.

I was extremely tired, huge, being eight months pregnant, still having to rock to sleep every single night a giant toddler, barely fitting the two of us into the rocking chair. What a sight we must have been! Again, I can only say that my Lord Jesus Christ must certainly have carried me through because I do not remember any of it, pain, discomfort or otherwise. 

Mom went back to France a few weeks before Keith came back from Indonesia, leaving me to fend for myself with two very sick kids –they had caught the flu. Opposition in all things. The long-awaited reunion with my husband was all the sweetest.