30 seconds to go to the bathroom uninterrupted.
45 seconds to heat up my coffee in the microwave for the 4th time today.
5 minutes to take a shower without someone having a tantrum.
10 minutes to eat dinner without someone needing a giant squishy hug.
1 hour for a power nap. Or better yet,
8 hours of continuous sleep.
I’ve been thinking a lot about time. It’s not a surprise.
365 days since my son’s PDD-NOS diagnosis. Today.
One year since I sat for 2 hours in the doctor’s office to confirm what we already knew.
10 minutes to read the “red flags” pamphlet and wonder why no one had given this to us earlier. 40 minutes on the phone with our local autism resource center to learn about support services in our area. 90 minutes in an IEP meeting to create a plan for my son for the next 12 months.
A year.
I look back at where we were last December 21st. Confused. Scared. Overwhelmed. Alone.
Now, today. Still confused. Still overwhelmed. But no longer scared. And no longer alone.
A year filled with more successes than failures. 30 minutes of the boys sitting together watching Wow Wow Wubbzy. A 2 day trip to Storyland. A Thanksgiving dinner that lasted more than 2 minutes. A bedtime routine that is now 5 minutes instead of 45 minutes. The day I left the house for 19 hours to see Glee in New York City.
All of these moments could have never happened a year ago. Thanks to intensive services and lots of therapy. And time. We had time on our side.
Our son will have a lifetime of hard work ahead of him. But we’ll get through each minute together.
When I first had kids, my friend told me that the days drag but the years fly by.
365 days.
A year that started with such heartache. A moment now filled with hope and promise. Tomorrow, the clock will start all over again and we’ll be in year two of our diagnosis.
I know that someday I’ll sit with my warm coffee and my hot dinner after a long shower following a full night’s sleep.
I’m ok with that someday not being now.
“Time is waiting
We only got 4 minutes to save the world
No hesitating
We only got 4 minutes, 4 minutes” – 4 Minutes by Madonna and Justin Timberlake
December 21, 2010 at 2:45 pm
Not Happy Anniversary, but…what? Welcome to Year Two? Maybe. Perhaps, looking forward to a TIME when we can get together. I’ll go with that one.
December 21, 2010 at 4:07 pm
I like it. Am looking forward to that TIME too.
December 21, 2010 at 7:45 pm
Oh I am so exited to think that you two are maybe meeting! Thats fabulous!
Meeting DQ was AMAZING!
December 21, 2010 at 9:41 pm
You are two amazing women – I bet meeting was great fun!
I hope spectrummy mummy and I can meet. I’m going to start playing the lottery now.
December 21, 2010 at 2:49 pm
Love it! Exactly true: eating a hot dinner can wait. ((big squishy hugs to you))
December 21, 2010 at 4:07 pm
thank you. I’ll take the hugs (as long as they aren’t during dinner)
December 21, 2010 at 2:51 pm
What a difference a year makes. You are truly amazing and I have been proud of you for each one of those days and the ones before!
December 21, 2010 at 4:08 pm
thanks mom
December 21, 2010 at 3:17 pm
Just wait, year two after diagnosis will reap even bigger rewards – though I cannot say for sure if it will involve hot coffee, a long shower, or more sleep, but it will be worth it!
December 21, 2010 at 4:08 pm
thank you! that gives me much hope – I hope we see all that you have with your son. He’s an amazing little guy!
December 21, 2010 at 4:10 pm
Glad you can look back and feel like you’ve come a long way! We just had an “anniversary” too.
December 21, 2010 at 4:15 pm
I read that in your blog! You’ve come a long way too
December 21, 2010 at 5:00 pm
Oh how I long for some of those things – but I agree… I’m happy for now without them. You survived the first year. The challenges are still there but you survived. Good luck in the year(s) to come.
December 21, 2010 at 9:44 pm
thank you. I have a feeling that in about 5-10 years, many of us will be sitting down to that hot meal. Until then. we can continue to share our progress together.
December 21, 2010 at 5:58 pm
Congratulations, you’ve made it through the first year! As you know, we’re six years into this, Jacob’s complete lack of functional language propelling us into diagnosis sooner rather than later. But however long it has or hasn’t been, the ride is like nothing else on earth.
These days on weekend mornings my kids are happily entertaining themselves for an HOUR on our 2 computers (thank heavens for that 2nd computer). So that’s a WHOLE HOUR of extra sleep I get on weekends. Makes all the difference in the world, I feel almost human.
December 21, 2010 at 9:43 pm
Your progress has been great inspiration to me, and I hope to some day be where you are. In the meantime, I may save up for another computer. An extra hour sounds heavenly.
December 21, 2010 at 7:47 pm
WOW!
So much happens in only 1 year!
You are so insightful, so knowledgeable and so compassionate towards your boys, it’s hard to believe it’s only been a year!
Here’s hoping the next 365 days are amazing x
December 21, 2010 at 9:57 pm
thinking of you and amazed at the progress you’ve made with your family in one year! we are four years into diagnosis and you are truly an inspiration for me!!!
December 21, 2010 at 10:00 pm
Your juxtaposition of time helps everyone understand a little better. I get a time-warped feeling sometimes, too – especially in a mix of my mother with our children.
December 23, 2010 at 11:56 am
thank you. happy holidays to you
December 21, 2010 at 11:13 pm
congratulations Alysia!! You are amazing. You know I often think about the day I will get lots of sleep, and eat a warm meal slowly, take a loooong hot shower, have a clean house etc… And then I realize by then my kids will be grown up and all the fun things we do will be over. That kind of put it in perspective for me. So, like you, I’m ok with that someday not being now. Hope your next year is easier and more fluid and full of even more fun adventures.
December 23, 2010 at 11:55 am
thank you. someday I know you and I will get that sleep we deserve. and then we’ll be old and our bodies will wake us up anyway
December 22, 2010 at 9:14 am
1 minute to read your post, the rest of the day to think about it. 10 years since I sat in an office waiting for a diagnosis for a child.
December 23, 2010 at 11:54 am
wow. 10 years. I look forward to that anniversary to sit back and reflect again.
December 22, 2010 at 9:41 am
Anniversaries are so important to us so we can look back at how far we’ve come (or not). Giving a label to children can be so helpful to the parents so we can have these anniversaries, and celebrate these accomplishments.
Congratulations on making it through the first year. I hope this one is more smooth for all of you.
December 23, 2010 at 11:52 am
thank you. I’m learning more each day from him and all of you. happy holidays!
December 22, 2010 at 4:22 pm
I am not ususally this late in responding, I am a little anal retentive about these kinda of things, but with “the game” and all, forgive me:)
You are not the least bit alone, as evidenced by the 23 previous posts and the countless others who are as lucky as I, to be a FB friend/real friend/family.
You wrote in your header, you’re the kids best advocate and I don’t doubt that at all. You will do what needs to be done and then some, and I have complete confidence that next year, come Dec. 21 there will be great things happening and I for one can’t wait to hear all about them.
December 23, 2010 at 11:52 am
you’re forgiven – that game was definitely worth holding off on commenting! thank you as always for your very sweet and encouraging comments. happy holidays to you
December 23, 2010 at 5:31 am
Awesome post. I never took the time to think of it in the way you presented! Wow, I knew it was a lot of work, but when I read your post I realized just how consuming it can be.
Glad you’re seeing a hopeful future! We’re trying to get there too. We’ve only been doing early intervention since Sept, so I am still basking in the awareness that it is not all on ME anymore. (keeping my son engaged and making progress.)
Have a wonderful holiday!
December 23, 2010 at 11:51 am
thank you! I’m glad you’re getting help and respite. we all need that
happy holidays to you!