Autistic Is The New Typical

Is everything in your life black and white? I mean, do you have clearly defined lines for your life? This fits neatly into this category over here, and this fits neatly into this category over here...

I don't really think as parents, we actually have that luxury. The luxury of knowing exactly where everything goes, all the time. It's part of the parenting limbo... I have five very awesome children and as we all know, Evan & Jack are autistic. Its quite possible that I have forgotten that the boys have this disability... I believe that in accepting my children and their differences, I may have started to  wonder if quite possibly, Evan & Jack were the 'normal' ones, and we were actually the ones missing out on something... After all, they seemed so happy, they seemed so content, THEY seemed like nothing could bother them... So perhaps, just perhaps, WE the "typical" ones, are missing out on something? I have felt confused over the past few years, quite a few times. I have questioned why it was that they needed to be singled out, why it was that they needed to be handled with kid gloves, and why it was that they needed this label. Afterall they are my children, being fiercely protective, doesn't even begin to describe it. When my own Mother would ask about their progress, I would feel a shield of protection being lifted. There was nothing malicious in the words that she was delivering, but in the mere fact that she was regarding them differently from the other 3... The fact that words even needed to be exchanged... It hurt. They are no different...

However... Then we come to a moment where perhaps Evan or Jack is treated poorly. And immediately, again my defenses are lifted. I think to myself, these people know the boys are autistic. Where is their patience, why are they treating them like that? I want to leave, NOW. Give me my children. So where is the balance? Why all of this Gray area? I feel like I live this period of my life in constant gray. Not gray unhappiness mind you, just gray uncertainty.

All of this comes up because of a simple email. A simple courteous email. Our children go to Sunday School, and two weeks ago the classes graduated. Our boys were moved to the Kindergarten classroom. Until now, they had been in the Preschool level. Since they had gone to Kindergarten this past month, there was no reason to hold them back and not keep them with the peers that they had been with over the past 18 months. They moved to the new classroom, with new teachers, and a new curriculum and of course as you can imagine... There was chaos. Change isn't the boys favorite word, they get it honest though, I'm not a fan either. So for 2 weeks, they've been adjusting to the newness of it all. I'm not in there with them, so I'm not positive of the progress... Today however, I received an email from Charlie, the Pastor of Children's Ministry. Charlie knows us, he was one of the first people I ever spoke with on staff at our church... I feel very close to him and know that he has the best interest of our family at hand. Charlie simply wanted me to write up one paragraph for each of the boys, of how they could best minister to each of the boys... Of course he then wanted to share this with any individuals that would be in contact with the boys...He also said that if I felt it would be better, I was more than welcome to come in and talk with him directly about the boys.

Harmless email right? Totally. Let's just say it was great timing that I was with my best friend Holly when I received the email.

Living in this gray area that I've developed... I think I've convinced myself that Evan & Jack are perfect, and wait... Don't you see it too?? Forgetting all the while that 99% of the rest of the people out there, don't spend EVERY WAKING MOMENT with these children. The little quirks and nuances that they have that are totally commonplace to me, could be incredibly pesky to an outsider looking in.While I am appreciative of Charlie's email, I knew immediately that I wouldn't be able to encompass either of my kids in one paragraph. I'm planning on sitting down and discussing my boys in a meeting with the Children's Ministry Staff. I'm hoping that I'm able to appropriately convey my feelings and at the same time... Did I mention I tend to ramble when I'm stressed?

Incidentally, I'm stressed, did this make any sense to anyone?

 

 

Comments

[Marissa]

I wish more people in our area were like this. We're new in our journey as a family of a child on the spectrum. It's frustrating at times that no one understands our son.

[Amy]

Autism is often very misunderstood! It really is a shame as well because Autistic children are amazing. They have so much in them and people over look it. I was watching this freat video this morning that really opens your eyes up and takes you into the world of families that have autistic members. It isnt easy but this video really does open your eyes to a world that not many understand. http://www.risingchild.com/video/video/129-Autism+Every+Day+7+minute+version?groupid=4

[Cathy]

I can totally relate to this. I have b/g twins who are both autistic. They are 9 now. We joined our church when they were 2. At 3, they were going to PPCD (preschool for special need children) and I felt that our church was the one place they were viewed as "normal". Around pre-k age, a woman approached me and asked me if I wanted a Special Angel volunteer to help my kids while they were in Sunday school. I wasn't sure what that was so she explained it was a person to shadow and they are there to help kids with special needs. I told her sure, that would be great. Once I left the church, I burst into tears because like I said..that was the place they were normal and now they are classified as having autism there too. But my husband told me to be grateful for the fact that there is a group like that at our church. I tried to view it that way too and was more open about it. After they got their shadow, I noticed they got more out of Sunday school. They still have the same shadows..Stephanie and Crisann. They really don't need them anymore now that they are in 4th grade. They just go and kind of stand behind the scenes in case they are needed. Two years ago, I joined the special angels group and now I shadow a little boy who is in 1st grade who has autism. And honestly, I don't think he needs me, he's very high functioning. But for now, he likes me to be with him. I give him a lot of attention, tickle him, help if he gets overwhelmed by going for walks. It's my way of giving back to the group who have helped my kids all these years. Word gets around that our church provides this and we have many kids with special needs now..not just autism..kids in wheelchairs, kids with emotional issues, kids with Downs Syndrome, etc. Three times a year the group has Awesome Saturdays where parents of special needs kids can drop their kids off at noon (at the church) and they stay until 4:30. It's to give the parents a much needed break. And the kids LOVE it! So, I totally get what you are saying but try to think of it as your church cares enough to want to do the best thing for your boys. And when you have your meeting with the Childrens Staff, mention putting together a group of volunteers who will help kids with special needs so the parents can go to church in peace and not have to worry. Several other churches around here are adopting this idea and using it in their church as well. Your boys are perfect and I too, don't see my kids quirks so much anymore. I'm like "don't all kids do that?". My son is probably one of the most popular kids in his school. They are both mainstreamed, my son gets pulled out for special ed but he is the most social autistic kid anyone has ever seen. One of his "autism gifts" is his memory and he remembers names and faces. So, he says hi to everyone by name (in all grades..not just 4th) and kids like that. Everyone wants to be remembered and my son can do that. The teachers call him the "rock star" of the school because everyone loves him. Now my daughter is more reserved and shy but does better at school work. She's not even pulled out at all. But, she kind of keeps to herself and has a few friends. If I had to say I loved something about autism, it would have to be they don't judge people. They like people no matter what. I can't imagine either of my kids making fun of anyone or teasing anyone for being fat, thin, tall, short, etc. Autistic people accept others for the way they are. If only the whole world were like that.