I recently connected with a group of special Moms. All are Mothers to a child (or children) who have special needs. I've found community with parents of children with Down syndrome, but am also finding a larger network of support through others who don't have the same circumstances but understand the change in expectations just the same. Since the dynamic of Expectations has been on my mind, I've asked a couple of friends with different circumstances to share their experience and how their Expectations have changed. So, I'll be sharing a couple of posts by some new friends in a blog series I'm titling: Expectations. (I know....can you HANDLE the originality of the series name? Genius. :) But, since there is a lot to be said on Expectations, I decided I didn't need to fancy it up at all...)
This is Jill's Story.
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My name is Jill, and I have to give a great thanks to Jen for having me guest post on her blog today! I am fairly new to blogging, but am loving it. Among other things, I am finding it as a great way to let out all kinds of feelings about my son Kekito’s Autism and how it affects our lives.
Jen and I decided to broach the subject of “expectations”. We really expect so much, don’t we? I feel like a large majority of our population feel entitled to so many things; we seem to just expect things to “go right” in our lives. “Suburban home, 2.5 beautiful children, a Labrador retriever, etc…” ;)
At some point I think everyone has some sort of wake up call. I think I’ve had a few in life thus far. My first big one was in high school. I won’t get into details, but I learned the value of good friends & loyalty. There have been many more adjustments to my expectations along the way; but the biggest came with my first son, Kekito. When he was around 10-11 months old, I began to notice the first signs of Autism.
When I was younger I never imagined having a child with special needs. It’s the “it wouldn’t happen to me” attitude. Why do we think that? Is it a defense mechanism? Or on a deep level do we think that there must be some greater cosmic reason for it to happen to other people? And I apply that question to all the things we think that way about: getting hit by a bus, a plane crash, the lottery even! …“It won’t happen to me”. Knowing what I know now, I know that can’t be true. It’s just life. Plain and simple, everything has to happen to someone. At first I thought, “Why me?!”, then one day I realized, “Why not me?!”. If 1 in 110 children are going to have Autism these days, seriously, someone has to live with it. So why not me?
I read a beautiful poem once that said that God gave special needs babies to the special mothers who could love them, nurture them, empathize with them, be patient and kind with them. I don’t know if this is true. I often think of it, and wish & hope that it’s true. Because if God thought I was special enough to have Kekito, then I know I can make it through all the rough times. It’s in those rough times I most remember it. It brought tears to my eyes, because I had always expected to be a great mother. Easily. Even though I know that I bend over backwards and turn myself inside out for my son, so many days I don’t feel like the great mother I expected to be. I think the problem is I expected to have infinite patience for my children. Then when I don’t, and I get annoyed to the brink of insanity I feel overwhelmed with guilt. I realize that on many days, it must seem like hell in Kekito’s head. I have ADD and a few sensory issues myself, and it’s a nightmare some days. Seeing how many problems Kekito has and knowing that he doesn’t even have the ability to fully understand what’s going on… it makes my heart break and streams trickle down my face. It aches to know that many days he is so very likely, confused, frightened, or just not feeling well; and there’s nothing I can do to explain that it’s only for a little while.
I expected Autism to be terrible. But I’ve learned that it’s really not so bad. Maybe on some days. Maybe in certain aspects of life. But overall, I actually feel really blessed by Autism. It gave me a stronger bond to Kekito than I think I would have had otherwise. It really made us a team. Everyday we go into battle together. There’s a little friendly fire here and there, but it’s all good at the end of the day. I am so much more patient than I ever was before. I never knew I could hear the same word repeated to me ALL day and still be able to feign excitement for him on the thousandth go-around. “Moon. Yeah, that’s a really fantastic word Kekito…. Yes, moon, unh huh, moon. Good job”… Awesomeness. I just try to remind myself how glad I am that he is talking at all!!! I never expected that it would finally lead to me to what I want to do in my life. I never thought I’d want to work for Early Intervention, but now it’s the only thing I want to do.
Life now is so different than what I thought it would be when I decided to start my own family. There are things I’d change if I could. But I don’t think Autism is one of them. I know that sounds strange. And some days, I’ll want to take that back. I can guarantee it! Overall though, I think it has made me grow immensely as a mother, and a person. It’s taught me not to expect anything, but rather to be grateful for everything little.
If you would like to read more about my family, as well as our Autism experience, please visit me at: http://www.sublimebynature.blogspot.com/
~Jill
11 comments:
Hi Jennifer,
I have a theory about expectations. I have worked in social services most of my adult life, with the developmentally disabled, the elderly, and now juvenile delinquents. This is what I have learned about expectations. I feel that it is important to set them high. Someone has to believe that the (near) impossible can be achieved. The reality is that they probably won't be achieved, but something more will happen than if there is belief that it might. For example, I now work with juvenile delinquent males in a residential treatment facility. I have to believe that they are capable of so much. I have to treat them as if they are not juvenile deliquents and give them trust and the ability to soar. If I didn't what is the point of my job working there. If I believe that they are all liars without the capacity to become exceptional human beings then what is the point of my job. The truth is that the first defense of a juvenile delinquent is to lie their way out of a situation. Very often they get in trouble for making mistakes. But it is a process of learning. And eventually the mistakes get smaller and the learning curve lessens. But boys have come back and been in so much better places then ever though possible. When I worked with the developmentally disabled it was the same thing. I believed that they could do the harder tasks, often they couldn't, but maybe they got half way there and half way there was more than they ever thought possible.
I believe you have been given a gift with Elijah. I am sure you will be told all the things Elijah may never do. On the other hand you hold the gift to mold and shape his life, but in turn he will give you so many gifts far greater than you can imagine. I know you have blogged about many of them, just one look at his smile and there is reason to believe angels exist on earth. I believe that it will be up to you to knock on doors and challenge those who say that he can't. Without a chance to try no one will know what Elijah is capable. It is important to get Elijah into the regional center and start receiving all the help that you can possibly find for him. It is up to you to challenge his ablities and expect that he can do the (near) impossible. And maybe he will and maybe he won't. But unless you have those expectations you will never know what he can do. So expect the best, understand that he may never achieve them. But know that he will do more than many ever thought possible.
I believe there is a quote to that effect. Shoot for the moon, you might end up in the stars.
Hugs to you and your family.
Elizabeth Goldberg
Elizabeth-
You so perfectly put into words a part of my struggle- how to have high expectations of Elijah, but how to control the unrealistic expectations that aren't reality for ANYONE. (Having a perfect life, where everything looks and seems to be happy all of the time. Everyone knows that is a lie, though we sometimes buy into the pipe dream.)
I couldn't agree more with what you said and have been given that advice by a few people (Firstly from my Perinatologist while I was pregnant) and it is has been the best, most useful advice I have received thus far.
As far as getting Elijah into the Regional Center- he has been in the system for 3 months, but it is a weekly struggle to fight for what I think Elijah needs, but also to relax sometimes and remember that more isn't always better...it's a balancing act that I have yet to get right. But I'm doing my best.
((Hugs)) to you for your wise, wise words!!
Always make sure the expectations you put on others are what you expect from yourself. And if they are not, perhaps its time to look at whats driving those expectations. Great blog!
Jill....I have been following your blogs for a little while now and find that you are such a strong person. I love how you can admit that you are not perfect, but you do the best you can. My son does not have a learning disability but he has had sensory issues which are getting better everyday. I have also had to remind myself that it will get better and I can only do so much.
Keep on writing and I will keep on reading. ;)
-jen and Jonas
Missing you guys from New Jersey
I definitely agree about setting expectations of what they can achieve high. i have high hopes and goals for K, although that doesn't stop me from being completely blown away by every teeny tiny improvement! =) I think that keeps he and I both motivated to keep pushing!!! =)
Hi Jill,
Nice job! I think you explained your point of view on autism very well, and it will help others to also understand what so many moms & dads are going through. You are
becoming a very good writer!
Hi Jill,
Nice job! I think you explained your point of view on autism very well, and it will help others to also understand what so many moms & dads are going through. You are
becoming a very good writer!
Great post Jill (and Jen!) The idea of expectations is a great one!!! Isn't it like, every day...several TIMES a day that we re-evaluate them?
I agree with what Elizabeth's comment above. "Someone has to believe that the (near) impossible can be achieved. The reality is that they probably won't be achieved, but something more will happen than if there is belief that it might." There have been times I've been ECSTATIC that my son achieved a goal that I never thought he would reach...those are awesome milestones, and I wouldn't give them up for the world!
If you ever get a chance to see an interview with Temple Grandin (a woman with Autism who attained a PhD and has transformed the cattle-raising industry), Temple attributes a LOT to her mother who always had the belief that Temple could do more and be more than what the professionals believed.
Way to go, Jill! Expectations are a struggle for most parents, I think. And those of us with special needs kids really do get a "trial by fire" in learning to manage them. But I'm with you: I feel blessed by autism too. Because of my autistic son, I can find joy in small, beautiful moments that I feel certain I would have missed without his influence. I can recognize progress that once would have passed me by. He molded me into the kind of mother he needs, and that's someone I'm very proud to be.
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