Autism Acceptance Artist

Yes, Ben is a pretty amazing person! So is everyone, since we are all made in the image of God. But sometimes we forget that divine piece of truth and we are less than accepting of one another. It is very sad. I just wish we could see the best in each other instead of the worst.

It is very difficult to see past the dis-abilities in someone with autism. Yet, look at what my once non-verbal, non-compliant child can now do! He used to not be able to hold a writing instrument, let alone create anything with one J Now he can write, color and draw! Let's celebrate the amazing abilities!

Benjamin, the artist, today... well, last school year really, but he hasn't changed that much since :)

The 2008 Kingsbury Journal entry also talks about trying to see the best in people, discerning what is good and ignoring the bad, giving folks the benefit of the doubt and encouraging struggling families. We’ve all met special needs people who need a kind word, a simple smile, an encouraging gesture. I have benefited so much from angels in disguise! Thank you!

Glaring Stares and Loving Kindness

1999 to 2007

All in all the period from 1999 to 2004 flew by, we were so busy with home and outpatient therapies for Ben. Camille did very well in school, excelling in all subjects and being an avid reader. Angelique went to preschool when she turned three and loved meeting new friends there; she has always been my most social child. The girls were always there for their brother, through thick and thin, those five years of extremely intensive Applied Behavioral Analysis therapy; although they were very young the girls’ support was unconditional because we were a family and we loved each other.

What helped our family through that time were the social services offered through Ben’s agency. They provided Mobile Therapy, or MT for short, to us; a psychologist came to our home so as to not disrupt the family which was already under tremendous stress, and helped talk through some of the problems we were facing as a results of having a special needs child. Sometimes the sessions involved just me and Keith, sometimes the girls also. It provided some type of relief.

Unfortunately my best friend Jennifer Harper moved away to Hawaii in the summer of 2000 and left a huge void in her place. She was like the sister that I never had to me and our gospel conversations helped me to “liken the scriptures unto myself” and whatever trial we were facing at the time. Her children Hannah and John had truly grown with Camie and Angelique, being the same age as them. Camie and Hannah had even just finished a year of Kindergarten together. It would be very hard to let her go after three years of growing and learning together. But such is life, Steve her husband had finished his PhD at Lehigh University and it was time for them to go on. But we still had the five of us to rely upon and the Lord’s mercy which would not leave us.

Was it easy? No, it wasn’t. We still had to go out in the world where we had to face the inquisitive stares of people who couldn’t understand why our son couldn’t behave as well as our daughters. One day we were in a restaurant and Ben was fixated on a drink dispenser because we had just had a ward picnic where they’d had root beer in such a dispenser.

So he thought he would get more of the yummy drink. Well, the label on that particular container said “Coffee” so of course we weren’t about to let him get any of that and get scalded in the process. Of course talking him out of getting the drink started an awful ordeal and a full blown tantrum ensued. An older lady approached me and briskly asked: “I would like to know why the little boy cannot sit still and eat his fries just like his sisters?”

It took all my patience and self-control not to explode and I just whispered: “Well, then you would like to know that he has autism”. Her face turned white, I could tell she was mortified; but what had she thought to accomplish by asking this question? I then just turned away and went to help my husband, still struggling to get Ben away from the offending dispenser. We got a doggie bag for the rest of our meals, Keith put Ben in his car seat, I got the girls and we sheepishly left the restaurant, not daring to make eye contact with any of the customers.

It has been about eight years since that incident and I would love to tell you that people don’t look at us anymore when we’re out in public, but it isn’t so. Ben will still act oddly at times, speak loudly, say something very strange or start laughing for no apparent reason. And he is much bigger now. All the more reasons for people to stare.

It is difficult to stand at times. Or all the time. We sometimes feel like animals in a zoo. I think it is because there aren’t any distinguishing physical features for people with autism as for people with Down Syndrome, for example. Ben looks “normal” so why doesn’t he act so?

I went through hundreds of pics of Ben trying to find a good one that would illustrate the point that "he looks ordinary but isn't". This scrapbook page will do :) It shows his first school pic, we had to do retakes; he didn't like having his picture taken!

Now that Camille is fourteen and Angelique is ten, it is especially difficult for them to be “looked at”, they get so very embarrassed. I understand them, I feel for them, it is difficult for me too; sometimes I want to shout at people and say : “Stop, we have the right to be here too!” But we need to have patience as it says in Alma 34:41: “But that ye have patience, and bear with those afflictions, with a firm hope that ye shall one day rest from all your afflictions”.

I think the hardest is when the “looks” come from members of your own congregation, members of the church. It happens. They don’t always know us, maybe they’re visiting our ward, maybe they’re new in the ward. I would like to encourage our people to open their hearts to differences, especially invisible disabilities or, as I like to think of them, different abilities.

Don’t be so quick to judge: if a child looks ill-mannered but the rest of the family is sitting quietly, do you really think it is because the parents have failed with that child? Or more likely would it be that there’s something amiss with that particular child? If a child is screaming as if in pain and the parents are trying all they can to soothe him to no avail, are they really a failure? Or is there something else going on? Be patient with the child and especially with the parents.

Look at them, turn around if you must but when you meet their eyes, offer a smile, a sign of encouragement. Please no frowns, no signs of rejection as they already feel so rejected by their own child, a child that they cannot understand.

I will always remember being in the Washington DC Temple bookstore with my whole little family. Camie had watched her siblings in our hotel room while Keith and I had gone to the priesthood room for a special stake meeting. It had been wonderful and I felt so great, I wanted to get the kids a little souvenir to take home with us to Pennsylvania. Of course Ben was touching everything in his sight. He got his chubby little hands on a silver CTR ring and promptly managed to put it on.

As luck would have it, he chose one about three sizes too small and proceeded to howl in pain that it hurt him. I was mortified. All eyes turned to us. All LDS eyes, right? Some kind, some not so kind, particularly the ones belonging to the Relief Society President from one of the other wards that met in our building back home... She had already flashed me those glaring, scowling eyes when I was in the library of our meeting house back home with Ben once. Why? Anyway, here we were again...

The kind store clerk told us to go in the bathroom and use some soap to get the ring off; all the while Ben was sobbing his heart out and I was scarlet. We got the ring off, I comforted Ben. “He doesn’t know any better and he’s so fast to get into mischief”, I kept telling myself.

I do my best, Keith does his best, our girls do their best to survive their embarrassment.

                    Do you remember being a teen and thinking all eyes were on you, all the time?  We need support from our brothers and sisters not glaring stares, it is hard enough out into the world. Maybe I am taking this scripture out of context but it speaks to me this way, that when we support each other great things come to pass: “...by small and simple things are great things brought to pass; and small means in many instances doth confound the wise.  And the Lord God doth work by means to bring about his great and eternal purposes; and by very small means the Lord doth confound the wise and bringeth about the salvation of many souls.” (Alma 37:6-7)  I hope to save my soul by being the best mommy I can be to Ben, and believe me, some days try my patience to its limits! I am not worried about saving Ben’s soul, for I know he is pure and he will return to Father who will receive him with open arms. It’s my salvation I am talking about.

Even if it got tough at times with Ben in church we never stopped going and we always held callings and fulfilled them. Sometimes we didn’t have adequate Primary teachers called for him, so I kept him with me, or Keith would.

One year was particularly rough. It got to the point where after teaching my own Sunday School class for the fourteen and fifteen year olds, I would just take Ben and we’d just “hang out”. I never went to Relief Society, so much so that the new Relief Society president, who was a new move in to the area, thought I was inactive. Misunderstandings happen. But then that very president felt prompted to call me to her presidency as the secretary. She thought it would reactivate me at first and that was the reason why she was getting the prompting.

I know now it was so Ben could get Sister Smith to be his Primary teacher.  I accepted the calling of Relief Society secretary but with Ben with me during that hour it made it very difficult to accomplish the tasks required of me. So Brenda, the Relief Society president, told the Bishop that Ben needed a Primary teacher.

Sister Smith was all he ever needed in a Primary teacher and more. She was loving and kind and interested in him. When I took him with me to Relief Society (when he was calm when I was first called) she would talk to him as a real person, listening to him and paying attention. It is hard to have a conversation with an autistic individual who doesn’t know you, they’ll either ignore you or the absence of eye contact will turn you off. She didn’t get discouraged, and that was even before she was called as his teacher. So they already had a relationship when she was called and that made a big difference for Ben.

Joanie Smith kept her Primary lessons very basic and simple for Ben. She encouraged him to draw and talked to him at his level of understanding, not condescendingly ever but kindly and compassionately. She used a lot of pictures and I know that Ben felt loved. As I have shared before, we never had stopped going to church –except to Stake Conference, who wants to drive for an hour, not hear anything then turn around and drive another hour? But I have to confide that at times it had felt like a chore because of Ben’s behaviors and restlessness. So it was hard for us, but for Ben it was torture at times. Little by little, after Joanie became Ben’s teacher, I could see a change in him. He became more amiable to the idea of going to church. Until the day when he got so sick that I simply couldn’t let him go.

He got up that Sunday morning with a horrible head cold and being Ben, the sneezes and his stuffy nose got the best of him; what a mess! I just couldn’t let him out in public, let alone put him in a shirt and tie to sneeze all over his peers all in their Sunday best and make all the Primary sick. So I told him we would have to let daddy and the girls go to church and that we’d stay home and cuddle and get feeling better. “Nooooooooooo! I want to goooooo to chuuuuuurch!”, came a huge cry and tears out of my once church-hating little guy. This out of the boy who would sing “I wanna go hoooome” as soon as we’d enter the chapel doors!

All I could think about was Joanie’s loving kindness: he wanted to go bask in it for a couple of hours. Each Sunday she was there for him. It is great to have a nice mommy and daddy who love you and two sisters who play with you and don’t tease you too much. But the love of a special Primary teacher who truly magnifies her calling is the icing on the cake. Ben’s social circle is very small. And Joanie made that circle a bit wider for Ben. It is amazing to me that he even let her in, really. But he could feel she was genuine and that is priceless.