*Note: I started this post on Friday, got overwhelmed, and had to walk away from it for a bit…*
Here I sit, the kids are home on summer Vacation, Softball season has almost wound to a close ( My oldest has closing ceremonies tonight), and as I try to figure out a way to make the impossible happen, to go up to Upstate NY and visit my family this summer, a lot runs through my mind. The kids and I went to NY LAST summer. before that the last time we had been up for a visit was in 2007. Three years…..If I had KNOWN all the important things that were to be happening THIS summer, we would have waited a year. Don’t get me wrong, I LOVED every precious minute of the all too short trip last year, it’s just that my brother and his wife and kids are home this summer. My mom has NEVER had all 6 grandkids in her house at the same time. My kids have NEVER met their cousins. On top of that, by cousin is getting married. This is important because, well, I used to Babysit her….she graduated kindergarten the same year I graduated High school, she is special to me and I love her dearly and want to share in her special day.
so, I have that on my mind, and as I think, I realize just how deeply I have changed, Autism has changed me. Yes, My son IS a gift, a blessing, and he teaches me daily. BUT there is another side to it all,the side I TRY to hide, but it has become more obvious of late. My fellow Blogging mom over at a diary of a mom wrote Here about how Autism has changed her social landscape, how she has pulled back, and as I read her post, I found myself nodding in agreement. I found myself taking a step back, and looking at my own corner of the world. Where there used to be date nights with my husband, a constant flow of friends coming to hang out and visit, Ladies nights IN when my Husband is gone to drill once a month….now there is staying home with the kids…movie nights at HOME with the kids…My husband USED to go hang out with the guys, playing paintball, ect….we left all that behind when we left Active duty 12 years ago….when we moved away and left “the guys” behind in California, shortly before finding out our son has autism.
The conversations now are “I miss the simpler days” back when we lived in Base housing, when we had a solid Family ( and yes, they ARE Family) support structure. We both long for the connections we had back then. I ache for the support I KNOW exists up in upstate NY, and for the support we HAD from Our Military Family we left in California.
I am tired of explaining every time we go somewhere why Dak does things the way He does, why he can’t sit still, why he doesn’t talk as well as a “normal” pre-teen boy, why he would rather spend HOURS on a swingset, than playing basketball, or whatever pre-teen boys like to do. I realize that I have withdrawn, That I am tired of the looks and whispers, that I am tired of feeling pitied, or judged, that I am a lot more “picky” about who I let around my kids, and into my world. I look for genuine, I don’t have the energy to pretend all is …well “Normal”. I look for people who don’t look at my son with pity, but who accept Him for WHO he is, who see PAST the differences, who see the BOY.
My social landscape has drastically changed, and maybe its not a bad thing. Do I miss hanging out at the mall, or girls nights out, or adult conversation? Yes, at times I do, but on the other hand, I don’t have the energy. I don’t have the energy to explain constantly that “no my son can’t ride a bike without training wheels” or “No He can’t swim and I am not a strong swimmer so I can’t teach Him, and I can’t find anybody who will” or “He is not being rude because he doesn’t want to play with you, He just likes to be alone” ….the list goes on.
A few years ago, for my 30th birthday, my husband and kids decided that it would be nice to throw ME a birthday party. NOBODY came, and though I am a grown-up….that hurt.
*Fast forward a few days, It is Sunday night now, and the kids are winding down, even as my thoughts continue to race*
Today, I visited a church that was not where we usually attend every Sunday. I did this because my youngest Daughter had attended VBS There this past week, and today the kids were going to sing the songs they had learned through the week, and they held a breakfast for the kids and their families. After breakfast, the kids headed to Sunday school, and my oldest found the Youth Group, and I sat in the fellowship hall, with the other parents, at a table alone. My Husband stayed home with Dak, like he does every Sunday. We TRY and get Dak to church as often as possibe, but most of the time, it doesn’t go well. The noise bothers his ears. the transitions from the car, to Sunday school, to children’s worship, to children’s church are too overwhelming. He gets overstimulated QUICK and we hit that boiling point of meltdown. But I digress….back to the topic at hand. As I sat in the fellowship hall, in a crowded room, alone, the Pastor started to speak to us about how important Family is, and about how their church wanted to help strengthen families in our community. He talked about how loneliness IS possible in a crowded room, and how a strong marriage is God’s gift to help ensure we are not alone, and yet there I sat, at a table, alone in a crowded room. I did not blame my husband for this….He was doing HIS role to ensure that we get to church at all, that autism doesn’t completely consume us. The loneliness I felt was different, it was not knowing HOW to reach out, a fear of being pitied, or judged, or mis-understood. Autism has done this to me. I fought back the tears. soon it was time to head to the sanctuary, time for the kids to sing. I breathed a sigh of relief. I had managed NOT to fall apart, THIS time. I stood at the front of the church, looking around at a room full of strange faces, looking for the handful I knew. My youngest was sitting with her Friends, as it should be. My Oldest had found someone she knew from school and was sitting with her, this made my heart smile. I wanted to st somewhere where I could get up to move, I had my camera with me as always. I spotted a fellow softball mom, one of the mom’s from my youngest’s team this year. She was sitting in the front row, and smiled invitingly as I wandered over looking lost and asked if I could please sit with her.
The kids began to sing, and for a time, I forgot about my loneliness, about my stress, my heartache, my worries, it all melted away ass I watched and listened, a part of me carried back to a simpler time, to my own childhood days of VBS. As the service wound to a close, we sang “I have decided to Follow Jesus” and as I sang, the words to a song I have known since kindergarten overwhelmed me, and I could no longer hold back the tears. I stood there, in the front row of a church I had never been to, and sobbed as I sang ” though none go with me, I still will follow…no turning back, no turning back”
It hit me then and there…this path I am on, this journey, is a lonely one, but it is the one God has called me to. Yes I ache for friends who “Get it”. Yes I have days when I simply feel overwhelmed…when this thing called Autism feels TOO big. Yes I have moments when I can’t handle being around my friends with “Typical kids” ( for the record I HATE terms like Typical, I just don’t know how else to put it). I Think my fellow blogging Momma over at Red Shoes, Autism Blues, said exactly what I have been thinking lately in her post today…..(below is only PART of what she had to say, but I found myself nodding and crying through the WHOLE thing)
“Now in all fairness, I must say that the friends that I do have, the friends that have known me for years are incredible. They are fabulous, supportive, and absolutely wonderful. They ask questions, they listen, they share advice, they offer to help. They’re great, and I love them, but sometimes it is so hard being with them.
It’s hard on many levels.
It’s hard because their typically developing children are exactly that…typically developing. It’s hard to see pictures of their 3-year-old dancing queens, soccer stars, and karate masters. It’s hard because while their kids twirl and score and kick, my child is learning to use a fork, to hold rather than eat a crayon, and to find socially appropriate ways to stim. It’s hard because their 2-year-olds can talk circles around my little guy. It’s hard because they don’t always have to hold their child’s hand so that he doesn’t bolt out into traffic. It’s hard because their kids turn and look at their parents when their name is called. It’s hard because they go to birthday parties, in fact they throw birthday parties for their kids, and their kids actually enjoy it. What simple luxuries! I’m envious. It’s hard.”
I am blessed to have a mom who whether she knows it or not, always helps me through the hard times. She “Get’s it”. I just wish she didn’t live so far away. Yes, I know, God will not give me anymore than I can handle, and he will always make a way and see me through. I just have days when I wish He didn’t trust me so much! That being said I look back over the journey this far, back to where I was at when we heard the words “Your son has Autism” and I see just how far we as a family have come. but one thing remains constant, the overwhelming loneliness. I feel as though I am walking around in a foreign land half the time. Nobody “get’s it” , nobody speaks our language. I feel alone, even in a crowded room.