As a runner, I think about time – like, a lot. How fast was that last mile? How much time did that race take? How much time do I have for today’s run? What were my splits? What did I average?
Time. It’s on my mind all the…well…time.
But I’ve been thinking about time in a different way recently – as in, I wish I could go back in time.
We all have things we wished we had done differently when we were younger – the girl who got away; the trip we didn’t take; the job we declined. I’ve got a bunch of them, but to be honest they are all silly and childlike save one – I wish I had been paying more attention to Brooke when she was a baby.
Now, understand, it’s not like Brooke is in a bad place right now. Truth is, she’s been doing pretty well – her language gets more and more complex; she’s expressing how she feels; she’s getting more independent. She even as a pair of sisters fighting over whose friend she is. Brooke is in a pretty good place right now. In general, she is happy.
But at the same time, I can’t help but notice the widening gap between her and her peers. More and more her home-school communication journal mentions fewer and fewer friends she plays with. As the girls her age have grown, I’ve seen fewer and fewer invitations to play dates – there have even been a few parents that just flat-out ignored any attempts on Brooke’s and my attempt to set something up. And birthday parties? Those are becoming rare as well – a natural progression to be sure; when Katie was Brooke’s age, she decided that she wanted to have smaller, more personal parties. I get it. But it’s still difficult to see the pictures on Facebook and the mentions of parties, knowing that she was not invited. It’s not a “wah” moment, just an observation.
What scares me the most is the impending move to Middle School in a year and a half. Will Brooke move on with her peers? or will she end up at a different Middle School with a special program for kids on the Spectrum? These girls may not be calling for play dates and birthday invites, but they know her; they get her; they’re cool with her.
Would that I could go back in time to when Brooke was a baby. Would there be anything I could have done? Would that I had listened, really listened to Jess when she first felt something might be different. Would Brooke be in a different place right now?
How could I have not noticed? If I had, would she be different? I know it’s not PC to wish the autism away, and you know, it’s not the autism per se that I would wish away – it’s the difficulties that Brooke faces every day that I wish I could change. Brooke has autism, and no matter what I noticed or did six or seven or eight years ago wouldn’t change that – I just wonder if I had noticed earlier; if I had paid more attention; if I had gotten her the help she needed earlier…would it be different?
I wish I had a time machine so I could find out.
Run Luau Run 
How I wish I had time to respond in detail. Will try to do that later. In the meantime, support and {hugs} from Florida.
You are not the only one to wish that! My now 15 yr old son wasn’t diagnosed until 8… even after YEARS of telling the drs something was wrong. For the majority of the time, I was a single mom; barely able to keep the house going, much less add in extra items he needed for thereapy… I WISH I could change that situation to give him a better start to facing these challenges… But, we are only given each day once; so spending my day wishing for the past is a wasted day… So, now we spend the day looking to the future. As a freshman in High School now, the future is looked for often… and he will have an amazing future! That I know… (because I pray for it and work for it often! 🙂 )
You aren’t alone in this. I wonder this too, especially as I see the difference in where my youngest is (dx’d a year younger than his brother was) versus my middle guy. A year extra of home supports and school supports and all my knowledge. Had I known what I was looking at was more than just…I don’t know…
But.
Ever since that moment when we finally saw what we needed to see, we’ve been getting our son everything he needs. As have you with Brooke. And whatever class or school or place in life he ends up, that will be where he is. And we’ll be there to support him. As will you with Brooke.
The woulda/should/coulda game hurts as does the unknown. But Brooke will do spectacular things because of everything you and Jess have given her. That part I know with my whole heart.
I feel this way a lot. The what if’s,haunt me. What if I hadn’t thought that his being “our Buddha baby” was a good thing? What if I hadn’t chalked up his meltdowns to just being 18 months and frustrated? What if I hadn’t assumed his expressive speech delay was no big deal just like his older brother’s? What if I hadn’t gotten pregnant and been really sick for months, right around the time I should have been seeing all of these things and a lot more? PC or not I do wish his Autism away. He struggles a lot and I would love to make things easier for him and his sister and brothers. He just turned 6 and him getting older terrifies me. He has only been invited to one school friend birthday party. I know that I can’t beat myself up over the what if’s. It doesn’t help him at all and it definitely hurts me. I would have done things differently,but I also think a lot of parents,whether with kids on the spectrum or NT,feel the same.
Okay I am back. I re-read this. I still feel how strongly you grapple with this through the screen. And I really don’t have anything to add …. as my 16 year old is back in her room having screamed at me about the fact that our life isn’t what she imagined (laundry mountain, not enough dinners around the table, the list goes on and on). Which makes me relate to what Alyson said. I am rambling but thank you as always for your candor.
I totally understand this story. My son is going to be 19 at the end of this month and has asperger’s. It wasn’t discovered until he was 12. Oh what I could do if i could go back in time too. Thank you for your story!
I often wish I had a crystal ball to look into the future….will my daughter be ok, what happens to her when I die….will her brother be ok with taking care of her, will her brother marry someone who will accept her sister….the kist goes on and on….
This. So exactly this: “you know, it’s not the autism per se that I would wish away – it’s the difficulties that Brooke faces every day that I wish I could change.” I don’t want my girl to be other than who she is. I just don’t want her to struggle. And I don’t want the world to be cruel to her because she struggles.
And the what-ifs eat at me, too. I think they always will.
Well, as a special needs foster parent, I did know that something was off when my son came to us at 8 months. He has had tons of interventions from 8 months on, speech, pt, ot, birth-to 3, early childhood, psych and behavior and every other type of counseling known to man, except equine, which he would have no part of. He-s 24, a really good young man, but definitely ‘on the spectrum”. Would it have made a difference if he had started even earlier? Probably not. Your dear girl is so lucky to be where she is, right in the middle of her family. She will be just as fine as she can be!
So hear you! Hugs!
What an incredibly brave and honest post. The “What-Ifs” can tear away at you, but I’ve learned to simply try – note that I didn’t say that I succeed – to let them go. They’ll always be there, eating away at me, but I just have to rebuild myself brick-by-brick when they do and remember that I am doing everything – absolutely everything – I can for my boy now. I’m know that you and Jess are doing the same for Brooke.
I try to remember that what will be will be, regardless of how much more I cram into his days and regardless of the “What-Ifs”.
I knew at 6 months old that my son had autism – even told the pediatrician. The “official” and finally correct diagnosis did not come until he was 8. I think that the answers to all the “what if you knew sooner” or if you had “gotten her help sooner” would it have made a difference?…..maybe the answer is she would still be who she is, loved and supported by you and your family and still struggling with the challenges that she deals with due to her autism. I think if you did get in that time machine and traveled back to when she was a baby that you would see that she was loved and cared for in exactly the way she needed to be – even though you may have not noticed the autism sooner. You and your family are amazing and have always given her exactly what she needs.
I am far more concerned about where Joey would be if he got the school support he requires- and that works! I find once you know there is an issue and focus on support, it works out, no matter when you start. Its when the needs of kids continue to be ignored that there is a problem.