When I was a kid, a new primary song came out. The song is called "I'll Walk With You" by Carol Lynn Pearson. I thought it was kind of a lame song - not because of the content, but because the tune wasn't quite as catchy as some of the favorites such as "I Hope They Call Me on a Mission", "We'll Bring the World His Truth", etc. Now that I have a child who is special needs, this song means a lot more to me. It still isn't the catchiest song in the Primary Songbook, but the words are very powerful.
Having a child with Autism has been a difficult road. We are constantly assessing things, figuring out new avenues and ways to help him. It is so hard for me to watch my little boy have such a hard time grasping new concepts and to also watch him be a total social mess. There always have been and always will be people who do not understand Reagan. There are always going to be people in the grocery store who look at me weird because he talks funny, or because he is throwing a fit because he doesn't understand something. I am learning to look the other way and ignore...but it hurts. It isn't embarrassment, so much as my profound grief that he will never be like other people and just "get it". Sometimes, I just want to hide myself and him away in our own little world so that he can't be hurt. Even though Autism is a "social" disorder, Reagan is very aware when people are making fun of him or being mean. There have been days when he has come to me, crying in frustration.
If only people could see what I see and what we deal with on a daily basis, there would be a different understanding. I get frustrated with him sometimes myself...and usually, I am knocked to the ground by something that he says or does that helps me to know how lucky I am to be blessed with such a good little spirit. Is he perfect? No. Can he be a brat sometimes? Yes. Are there people who will never understand? Of course. Would I give him away, if I had the chance? Never. Do I wish that he and I both did not have this cross to bear? Sometimes. I will not lie - I wouldn't wish being locked into a social prison upon anyone. Reagan's life would be a lot easier, if he were just "normal". Our family life would be easier...we wouldn't have to come up with something to feed him with because of his weird food habits; we wouldn't be thinking constantly about how to handle certain situations; I wouldn't dread going to public places - in case they are an unknown trigger to an overstimulated meltdown.
People look at him, and see a 7 year old. What they don't see is that he has the social abilities of a 3 year old. Milestones are usually hit - but much, much later than a normal child would hit them. Yes, I get frustrated at times, but I have learned over the years that my role as Reagan's mom is to teach him, love him, fight for him (a lot) and accept him for who he is. Sometimes, he is the glimmer of sunshine in an otherwise dark day. Other days, he is the cloud that covers the sun (because of a particular bad mood he may be in).
Most of the time, I am left in wonder at some of the things he has accomplished and that he has had to deal with in his little life. A lot of surgeries and therapies, etc. etc. and people still can't understand him. He wants to be understood, though...and if you listen closely enough - he just may surprise you. This year, he has just started to say prayers by himself...yes, something that others do years before this...but he is doing it...and he wants to do it...Sometimes I worry about his future and I wonder what will happen - and I can't face it or think that far ahead. I just live in the present right now...and do the best that I can as the protector of a courageous little spirit who is fighting to be heard.
Here are the words to the song - if you haven't heard it before...my perspective these days has changed drastically.
"I'll Walk With You "
by Carol Lynn Pearson
If you don’t walk as most people do,
Some people walk away from you,
But I won’t! I won’t!
If you don’t talk as most people do,
Some people talk and laugh at you,
But I won’t! I won’t!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.
Jesus walked away from none.
He gave his love to ev’ryone.
So I will! I will!
Jesus blessed all he could see,
Then turned and said, “Come, follow me.”
And I will! I will!
I will! I will!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.
Some people walk away from you,
But I won’t! I won’t!
If you don’t talk as most people do,
Some people talk and laugh at you,
But I won’t! I won’t!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.
Jesus walked away from none.
He gave his love to ev’ryone.
So I will! I will!
Jesus blessed all he could see,
Then turned and said, “Come, follow me.”
And I will! I will!
I will! I will!
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.
4 comments:
You guys are amazing parents. I've watched how patient you are with him (and all of them) and I know they were sent to you for a special reason. I love that song, too. Regan said the prayer in primary the other day by himself and it was very special. You guys are doing a great job! Ü
Awww. I love Reagan. He's a really neat and fun guy.
I remember learning that song when I was in Primary. I remember the chorister bringing in a wheelchair while we learned it. Her niece was handicapped in some way that I can't remember, but had to be in a wheelchair. I remember wondering why she was crying while teaching the words to the song.
The song does have a great message.
(I'll have to tell you about my Dell experience sometime...I got it working with a handheld mouse right now...long story short).
Reading this brought tears to my eyes. What a beautiful song. I didn't realize Reagan had autism. I have other friends with autistic children and I know how much strength that requires as a parent to navigate the storms that can come with that. I love your insights and your honesty though. I also could feel your unconditional love for him through this post and know that Reagan is a very lucky boy to have you as his Mommy.
When I hear a child has autism I think of my nephew. His parents had to fight the school system so they would implement the autism program.
Adam is now at Kent State University Not sure if a junior or senior and is an Eagle Scout.
Adam is not a social person, does his own thing. It was hard when he was growing up and not much better now but he is able to control some of his actions.
He won't be able to live on his own and will "blow up" for no apparent reason.
So give Reagan all that you can and guide him. You never know how he will turn out...
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