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On Sunday I went out for what was supposed to be a 17 – 18 mile run. Aside from 2 factors, it ended up being one of the best runs I’ve had in recent memory.
Factor One: I took a wrong turn mid-run that brought me back close to home a mile or two early. As I approached home, I realized that I was only going to have a little over 16 miles done. I thought about continuing on, but honestly, the gravity of a hot cup of coffee was simply too great.
Factor Two: I saw a young mom futzing with her little one’s seat belt on her jogging stroller. She was making funny baby talk along with lines like, “are you going to be a runner just like mommy? maybe even a lawyer too?”
Factor one I am sure many of you can relate to, but factor two? I think that needs a little explanation.
Initially when I ran by Running Lawyer Mom, I smiled as I heard her baby voice and her baby talk. It was full of love and hope. The words came straight from her heart. Her voice, despite being in that annoying tone we parents sometimes use with little ones, was full of warmth, wrapping her baby in a caress of anticipation.
As I went through these thoughts I continued to smile. I could feel the warmth in me.
But just as quickly as I ran by her (I was clipping along at the time at around 7:15/mile) my smile turned upside down and my joy in seeing this young mother turned to sadness.
You see, I remember those moments. I remember saying stuff like that to Brooke. Back before she could walk or talk, I remember planning her life, right down to the job and city she would settle down in; the number of children; everything. I had no idea what was just a year or two away.
We as parents know that nothing ever turns out as planned. For most of us that means our children may choose a different educational path or career path or marriage path, but we know they will get there. But for some of us, that path – that future – is much murkier than the slightly out of focus one we see for our neuro-typical children. For those of us with kids on the autism spectrum, the future is…scary.
***
I stopped writing this post at this point – in part because I wasn’t sure where I was going with it, in part because it was time to head out for dinner before going to see the July 4th fireworks.
***
Going out to dinner with a child on the autism spectrum can be, um, difficult. With Brooke there are a gazillion factors that can tweak her just enough to send a meal into a tailspin. Last night, as we sat at our table, Jess and I physically winced every time a baby would cry out or a toddler would cry out for his mama or the waiting line (we were sitting right next to the entrance) got a little too close. We eyed Brooke every time, knowing that each of those factors was pushing her closer to the edge. I could see her face starting to contort. The games on my iPhone provided only a little relief. This evening was looking to potentially go down the crapper in flames.
But then something happened. Katie started playing hangman with Jess and someone took notice. After a moment, Brooke decided she wanted to play too. Thankfully Katie thought that was a great idea and the two of them began to play.
My two little girls were playing hangman together! Laughing at the words Brooke picked (Snelly and Poop and Katie). Laughing TOGETHER!
I know that for some of my friends with neuro-typical kids, this may not seem like much, they are 10 and 8 after all. But this was huge. This was the first time they had played hangman together (in fact, as far as I know, this was the first time Brooke had played hangman…ever!). Brooke then followed it up by working away at the word search in the children’s menu. Despite a few speed bumps between dinner and the fireworks, she then made it through the display in spectacular fashion, laying with Jess on the grass, enjoying the show.
***
As we drove home, I thought of this post and what I had written. Brooke’s future is still cloudier than most. Jess and I are determined to keep her pointed in the direction of progress, but the path remains unclear. Just like any parents, we worry.
But you know what? My little girl played hangman with her sister last night. And she enjoyed it. And she played it the way it was supposed to be played.
The path may be hard to see, but the light shining on right now just got a little brighter.
Run Luau Run 
This made my eyes leak a bit. *ahem* I know the murkiness of which you write all too well. But, you’re right, the achievements our children can be dazzling even in their utter normalcy. That’s the light I try to follow when I feel lost, too.
Glad the evening turned around so beautifully!
As I watched Aidan in the pool yesterday with his brother and cousin I wondered why is he focused on me and not playing? I was stymied and a bit frustrated. You see a couple of weeks ago a CST told me, “Hypervigilant mom please it’s time to step back, he’s ready and wants to be independent”, and boy did that hit me like a ton of bricks! Since then I have made a conscious choice to “let go”, and life has been different. Until yesterday. All he wanted to do was to look at me and act up. And then I did something different, I left the scene and went to the otherside of the house and relaxed and guess what, he played. And played and played and played. Now his skills are not that of a typical 9 y/o, but they are catching up and really, who cares? He was doing his best and that is all I can ask for, right?
Our kids surprise us all the time, and when they do it is sweeter than honey! This gift is not lost on me, or you, many of us. We celebrate their successes as if they just received the nobel prize.
I am thrilled that the day went well and that hangman is a game that can be added to the list! WTG everyone!!
Whyd you have to go and make me cry!? You have such a beautiful family!! I know that seeing the future for Brooke is not easy but there will be days that she does things that you never dreamed she would be capable of doing. Last night was the first of many. You are so strong-hang in there Matt, you’re a great dad!
a) I love the phrase “caress of anticipation” b) note to self – reading posts by Wilson parents can make you start the day off with wet eyes.
Best. game. of. hangman. ever. Undoubtedly.
it is so scary but we all have each other which makes it just a little less scary.
Our emotions can run the gamut so easily, eh? Both your girls are going to be great writers; they have to be with two parents who can draw word pictures and evoke emotions like you and Jess can….love to your family, gail
Beautiful post, Matt! We all wish for a bright future for Brooke.
With love,
Mom
If there was ever a blessing in Autism it is that as parents we take nothing for granted.What seems small and insignificant to a lot of parents is amazing and inspires hope in us. Your girls are beautiful.
Well said. I would like to quote you if I may?
Beautiful post, I am touched to the core! My daughter will be 3 in September, and she was just diagnosed this past March.
Stories like these make me have hope again.
Quote away
I’ve had that feeling so many times. I’m ashamed to admit that I once went through Jack’s baby things (blankets, momentos, etc.) and got rid of most of them. It was a different life pre- diagnosis and the reminders were just too painful. It felt strangely good to purge and move on.
Like you, I just keep putting one foot in front of the other, sometimes cutting my run short when I get off course a bit. You just never know when one of those sunshine moments might sneak up on you, reminding you that the path is challenging and different, but nevertheless filled with hope and goodness.
One of my fave posts from you yet Matt. Just beautiful and heartfelt.
amazing post…i have an 8 year old boy and i LOVE it when he plays with his siblings, especially things that THEY like to do…. 🙂 I live for the little flashes of progress!
Its good to keep hope. I myself am a 23 year-old college student with aspergers. I can honestly say that if it wasn’t for the support given to me by my parents and sisters I’d be in the gutters right now and I’m STILL having trouble with college life. What you saw could be the first step to an at time difficult but otherwise supportive relationship between siblings. Nurture it and your little girl will have a somewhat easier time in life.
I hope so! Thank you.
I can recall the first conversation my son and I had. An actual conversation where I asked questions and he thought and answered them. I told him I needed to cut his hair cause it was getting too long. He answered please don’t shave it. I said but it’s long. He said some boys have long hair. I asked if he wanted to be one of those boys. He said yes I do. When I was trimming his hair I almost cried because that was our first back and forth. Since then he has started asking me questions to spark conversation. Some questions are a little out there, but they let me know where his beautiful mind wanders and helps me to think outside the circle. Squares have corners that limit thinking, Circles are limitless so we think outside.
What a beautiful story. Is that your daughter Brooke in the picture? She is beautiful. She has a lot of emotion in her eyes, as if she could speak with her eyes alone. What a beautiful gift 🙂
It is. Thank you Tara. And you’re right, she does say a lot simply with her eyes.
I also teared up in reading this. My family also know the ups and downs of Autism as my last son who is almost 4 has it and is very high on the spectrum. All of the other children are adults which i see now is a true blessing because they have the ability to understand and be helpful where our Lucas is concerned. Just yesterday Lucas was able to put a toy back in the toy box and push a button on a toy by himself with just a verbal command, that is a huge accomplishment for him. Then to look at your face eye to eye and just smile directly at you ….. that also makes me cry . My son doesn’t speak yet, He cannot eat normal food, but we still have all the hope in the world for him. The task of going out in public anywhere well it is just that it is a task all in itself. But we always try and we do believe someday things will be better or easier for him….Just keeping the faith.
Thank you for posting this and sharing, The Pursley Family
Your post meant alot tome as I have a grandson who is 3 1/2 & was dianosed with having Autisim when he was 2. I have been learning alot since then! Before the “Drewster” was dianosed I knew nothing about Autisim. Since then I’ve learned a little & I am in “awe” of my son & daughter-in-law with all they go through with Drew. They also have 2 other children who sometimes don’t get all the attentiion they feel they need but they are also learning how to be a little more patient with their little brother.
As I said I am learning but I don’t have a clue what it is like raising an Autistic child; I’m on the “outside lookiing in” I guess you could say!
Drew is learning & just recently when I went to visit he looked up & said “Hi Gramma!” I could have cried as that was the first time he said “Gramma” without being told to “go say Hi to Gramma.
As someone ealier said:
You just never know when one of those sunshine moments might sneak up on you, reminding you that the path is challenging and different, but nevertheless filled with hope and goodness.
Let me start by saying my son goes to a wonderful school where the school district has a special program for kids with autism. What is special about this program compared to regular special education is that they work on sensory issues like being touched and hugged and just being affectionate which we all know is a major issue for kiddos with autism. My son had it to the point of not liking to be touched at all.especially hugs and not touching his hands and head. But at the end of this school year he started wanting to hold hands and sit in peoples laps but he didn’t want to be touched, he would just sit there as long as there it was on his terms NO TOUCHING. But when I had a moment like the one you had was when just yesterday he was having a particularly bad tantrum and was just in general very upset so asked him what was making him so mad? He at that point,,,, God it makes me tears up just to remember… He crawled into my lap and just said ‘MAD!” and cried for a few minutes then laid there and let me rub and pat his back and tell him that i love him and just stayed there for a good 30 minutes while he let me confort him. Then he climbed opff and it was like it had never happenedd. He never ever has let me do that. I crave to hold him, he’s my baby and sometimes whether it’s for me or for him I would just like to hold and confort him and for the first time ever in his life he let me. He is 9 years old right now and he had never let me do that so it was defiinately a monumental break through for him and I hope it continues to get better even if it is at a snail’s pace I will always have and remember what happened yesterday! Thank YOU!
That was a great story and thank you for sharing, it really does help to read stories like this so we could remember to breath and know that those little moments will come. My son is five and it gets soooo hard to make it thru the day, but yes its those little things that helps, like the other day the pizza boy came in and my son who doesn’t talk looked at him and said HI well, i was sooo excited and the pizza boy was like why in the world are you making such a big thing that he said hi. I explained to him why and he said to my son oh well hello little man and Franky said hello back…. That is what makes me feel like I could do this and it gives me the
to move forward. So thank you for sharing..Good luck to all of us.
Yes, good luck to us all! I love that the pizza boy was able to roll with it. Just goes to show a little awareness goes a long way.
I cherish every moment the few times when my daughter (Asperger’s) and my son (Bipolar) connect. It always seems like a miracle…
Beautiful story! I think we all do get a little lost when it comes to our babies having difficulties. Having 3 normal(whatever that means) children and then a child on spectrum, its hard not to compare your children(ages 23 through 3). I have learn to enjoy every minture of their lives. It goes by sooo fast. My beautiful 3 yr old lets me enjoy and appreciate his youth a little longer thats all.
A beautiful post. I can relate so much and appreciate your sharing your experience. It is true that neurotypical families cannot always appreciate the joy we get in such small moments. Someone once said to me “the lows are low, but the highs are HIGH”. Keep hoping and believing for our beautiful kids!
lovely story….i remember the times i would say to my baby…..who is now 9….when u grow up….. He was diagnosed at 3 and i grieved for that child that i thought i had for a long time……but hes making progress and he’s happy, he can still achieve…..he learnt to talk a year and a 1/2 half a go…… not huge for non autistic kids but a.HUGE achievement for any autistic child…….now were working on getting dressed by himself. IS that a pic of brooke….shes beautiful! x x x x
yes it is. thank you so much.
My son on the spectrum left his private special ed school to spend a transition year next year attending the public high school and hopefully taking classes at the local community college. He wants to get a degree in political science and has joined the democratic town committee in town and may be appointed by them to the commission on the elderly and those with disabilities. He tells me every day not to discount what he can do and hates when those around him treat him like he can’t do something. He is quitting the summer program the town put him in because he feels they are treating him like he is stupid and his time would be better spent preparing to take the college assessment tests. When he was 8 or even ten, I had no dreams for him – I was afraid to have them. Now I have learned, he has his own dreams.
S
I loved your message. I have a 15 year old with Aspergers. While he is more socially immature than his peers, it has been wonderful seeing him play and relate with his younger brother(11). They are true friends which many of my friends with neuro-typical siblings wish for. It helps me rest a little easier as I look to the future knowing that they have each other. Thank you for sharing the beauty and hope in you special moment. Wishing you many more.
Your talent goes beyond running shoes. Thank you for this.
aw, you’re too kind!
Beautiful story. Just beautiful. Blessings to your family.
I have a daughter that has Asperger Syndrome (she is very high functioning). She is 23 years old, and was diagnosed at 9 years of age.It seems like a lifetime ago but I was told by just about everyone-teachers child study team,former friends and strangers-that she more than likely not finish school. They said don’t expect too much ! and my answer to all of these people was WATCH me make her do it! I have to tell you that it wasn’t easy but that we are very proud of her today because she has had a lot of people praying for her and she graduated from high school (she was on the National Honor Society),She went to Brookdale Community College,and is now attending Kean University.She wants to be a photographer.The most important thing is not to lose Faith.When everyone says no you can’t do something -stand firm and encourage your child to prove to everyone that you are still going to try!!
The best part of my life is when my little girl does something that completely surprises me. Like playing a game with her sister, or even sitting in a restaurant with us. Thanks so much for this story.
Thank you for sharing your experience, It is inspiring to know that as Family on the Spectrum we share the same concerns and almost identical thought process. My Son is going to be 7 soon and he never ceases to amaze me. I am grateful for the experience. Although there have been many challenges there have also been many celebrations. I wouldn’t change a thing. Looking forward to the future a little concerned but very optimistic.
What a wonderful post. Thank you for being so honest with your feelings. I can relate with what you felt as you were running. My 4 year old son was just diagnosed a month ago and I am still in the “grieving” process. I have my up-and-down moments but at the same time, I know I need to find ways of helping him as soon as possible. We’re based in Singapore and early intervention programs here are not so accessible to non-citizens:( Nevertheless, we are determined to find the best center we can afford. Wish us luck…
What amazes me is the solidarity that I have formed with other special parents. It’s amazing how we manage to open up in spite of the fact that we just met a few hours ago. We have a special mission as parents and it’s good to find people like you who are in the same journey.
Thanks for sharing. My eyes are very wet from your sweet story………..I know all too well, how much you enjoyed watching your precious girls play hangman together………
[…] could start with the story that Luau told the other day about the girls playing Hangman on the Fourth of July. I’d been dying to tell you myself, […]
Thank you for this Post! For the heartfelt rollercoaster of emotions I can relate to all too well, the struggle to find the opening in the clouds, the pure joy over sibling interaction, especially when it is something like Hangman, or in my case a game of “Sorry”…
I am from the Philippines, a runner and a mom of a 10 yr old daughter with ASD. I did my first full marathon in March and though the training was difficult and painful, surely, it all paid off as soon as I crossed the finish line. Isn’t the journey of raising a child with autism just like training for a marathon? It’s not always fun. It can get frustrating, tiring, repetitive and painful. And really, sheer determination and perseverance made me wake up 3am each morning for those loooong slow runs, knowing that i needed to do them to finish the race. With autism, everyday seems to be a slow long run. Just like I persevere in running, I will persevere for my daughter. I am determined to see her finish her race. Our daughters will cross their finish line. And it will be a victorious one! See you and Brooke at the finish line 🙂
A friend posted a link to this on her Face Book page. I have neuro normal children and your story (and all of the comments) helps me to understand what it is like to parent an autistic child. Thank you for writing it.
Thank you so much for sharing. It’s the little things that make you smile on this journey.
Today our son who’s almost 8 self calmed twice with very little help. Just 2 weeks ago both events would have ended with my having to restrain him so he didn’t hit me or anyone else.
I look forward to the little surprises he and his sister bring us everyday.