Today I want to tell you about a crazy new game Hudson devised: Off Beat Musical Chairs. But first, it’s been a little bit of a crazy time at our house recently with all the busyness of Thanksgiving and Christmas. Then one of the kids ordered basketball shoes on the web. The highly anticipated shoes finally arrived: one a size 9, the other a 12. And two left feet. No joke. (Hopefully not an omen of the coming b-ball season.) Later in the week I poured toilet bowl cleaner down the shower drain thinking it was Drano. Yep. Distracted. I did that. (And I haven’t exactly mentioned it to Jon just yet. I did, however, run lots of water.)
People ask me why I write about life and family here on weekends. Thought about it, and there are a few reasons:
- #1- I have a brain like a sieve. I want to remember the little things (usually the most important) that happen. I want to remember them for longer than five minutes. Savor them. And knowing I’m going to write about the little things helps me pay closer attention, live in the moment.
- #2- Brings me great joy to write about life and family.
- #3 – Uses up some of my 10K daily words writing here, gives my Jon a break. (You’re welcome honey.)
- And finally, if you haven’t noticed…. I particularly enjoy writing about my little Hudson.
Photo courtesy of Designs by Linda Nee
Why? As many of you know, Hudson’s five now, has Down syndrome. Life with a child with physical and emotional disabilities can be joyful. Also a strain, and difficult on the family. Simultaneously. Writing about Hudson helps me focus on the positive things that happen. The tiny milestones and progress. Also the average person has no idea the challenges of living with a special needs person. It’s a mystery. And the unknown can sometimes seem weird, strange. I find myself in a very unique position to write about mothering a little boy with Down syndrome.
Because not only does my little Hudson have Downs, but my oldest sister does as well, putting me in a rare category. Think about it: I’ve never known a day without an immediate family member with Down syndrome.
But being the sister and mother of a disabled person are two very different things.
The difference can be summed up in a word: responsibility.
Being mom to this very special little boy has had its highs and lows, joys and disappointments along the way. We deeply love and accept Hudson with our whole hearts, and yet his diagnosis changed our family and our family’s future. Forever. There have been countless physical, medical and communication challenges on the journey. Not to mention many precious and poignant lessons we could’ve would’ve never learned without Hudson joining our family.
On this blog I attempt to peel back the curtain just a tad on one little family that deals with disability daily. Mine. So you can see it’s not scary. Or weird. (And if it seems weird, don’t blame Hudson. Blame me.) Our family isn’t superhuman. We’re living life much like everyone else, just a few extra challenges thrown in on a daily basis.
I’m hoping to be one more positive voice towards loving acceptance of people with disabilities. Realizing these special people are far more like the rest of us than they are different. Dreaming of a kinder, gentler more accepting world longterm for our Hudson and many others. Striving to help humanize mental disability through writing about our typical everydays.
Jon and I were told numerous times after Hudson’s birth we were the perfect family for him. Really? I couldn’t see it at the time. I know they meant well. My thought in retrospect?
I think Hudson was the perfect child for our family.
Make sense? There’s a subtle difference there. Children with disabilities are needy and need to be served. That’s the honor, privilege and weighty responsibility our family is entrusted with: to care for Hudson and his many needs. For always. And Hudson in turn has been the catalyst for much of our family’s growth, stretching us, teaching us the meaning of true service. With a lot of joy thrown in along the way.
I shouldn’t write posts when I’m sick. (I’m sick.) Because I write (more) emotionally with a fever. But the reality is I wouldn’t get much writing done if I didn’t, because I’m sick a lot. It’s not that my immune system is weak or anything. It’s that Hudson’s is. He catches anything and everything. Also a master at spreading the wealth. See, he’s got no inhibitions about sneezing or even throwing up. On me. Or his dad or brothers. Doesn’t cough neatly in his elbow. Nope. Hudson has little awareness of needing to blow his nose or wash his hands. Might even stick those hands in his diaper. Yup. He does that occasionally. Hudson’s nearly six and still in diapers. And no sign that’s gonna change anytime soon either. These are just a few of the realities that many families with special needs children face daily.
So I told you I’d tell you about Hudson’s new game, Off Beat Musical Chairs. He came up with it all on his own, loves to play. There are two players. Hudson. And me.
He first showed me Off Beat Musical Chairs last week when he was home sick from school. Started on Monday and continued all week long ’til he went back to school on Friday. Now he comes home and plays it in the afternoons after school.
It goes something like this. But first, many of you know Hudson’s a thrower. Meaning he enjoys throwing objects like a tiny toddler would. His cup. Food. A lamp. My computer. CD’s. Yeah, you get the idea. We’ve worked and worked and worked on this bad habit to no avail. So in time, almost unconsciously, we’ve all become masters of placing valuables/breakables just out of Hudson’s reach. That worked for about four years, as long as we remembered to put things up high.
So last Monday, Hudson had a big breakthrough. He finally realized that if he got a chair, he could climb up onto that chair and it would elevate him enough to reach all those tempting things. CD’s, DVD’s, books, electronics, vases. You name it. Quickly realizing his new game, I told him to get down of course. With a little coaxing he did. This went on for several hours. Over and over and over. Hudson getting a chair, climbing up, being asked to get down. Finally I corralled all the stray movable chairs throughout the house in the dining room. All eight of them.
And just as soon as I get the last chair secured in the dining room, Hudson comes around the corner through the other doorway, retrieves it. Resolutely pushes it back around the circle into the living room again. Firmly sets his jaw, climbs that chair, reaches for the forbidden. And the whole game starts all over again. Now press replay about a hundred times. Stubborn he is. But so am I.
Last week when he was home sick, unless he was watching a DVD, he played this new game Off Beat Musical Chairs for hours. Many children with special needs do things like this almost compulsively. Over and over and over. Some open and close doors. Or make unusual noises. Or spin things. Or stick out their tongue. Or do other compulsive things. Like push chairs around the house and climb them for hours at a time. Giggle.
I’m grateful to report that Hudson was well enough to return to school again this week. So his hours to play Off Beat Musical Chairs were significantly reduced. Meaning I might keep my sanity.
The silver lining? Hudson’s learning to problem solve. And that, is progress worth celebration in the midst of the daily musical chairs insanity.
Hudson’s been a good boy this year. But no matter how much he begs or pleads, DO NOT bring him a step ladder. And if you and Mrs. Claus need a few extra chairs at the North Pole, we’ll leave some (8) by the chimney. One each for Dasher, Dancer, Prancer, Vixen, Comet, Cupid, Donner and Blitzen.
P.S. We’re putting up our Christmas tree tonight and it just occurred to me that Hudson might want the angel topper. Could be a really long game-filled December. (If you know what I mean.)
You may also like: Heart Hudson
I love your weekend posts and the little glimpses into your family life. I know y’all are blessed by Hudson daily.
Thanks Jess, and for dropping by. So appreciate our friendship across the miles.
Wonderful story. I can see Hudson playing this and being so pleased with himself thinking he has out foxed his mommy. I love how at the end you put such a positive spin on the game…problem solving! I think Hudson has many creative” problem solving skills” yet to be shared. Thank you for sharing your stories ( and occasionally your little guy for adventures at Livingston park).
You know it Lisa, he’s like the Cheshire cat! Look forward to the next trick H has up his sleeve… xo
Thank you Allie for that insight of life with sweet Hudson. You really painted a clear picture. And that was only a tiny part of the whole picture. I also love the positive spin you put in your story. But that is Fact. Hudson is problem solving! That’s a huge milestone! Problem solving, cause and effect….. toilet training is not toooo far away! I am so very glad you asked Santa not to bring him a step ladder!! Hahaha, I mean Hohoho!
Ho Ho HO! Yup, problem solving is big, sista!!! Looking forward to more of that…xo
Karen @ On the Banks of Salt Creek says
That is a huge achievement. Good job Hudson. God makes perfect matches when He puts families together. I was just discussing that with Nicholas who was really mad with Joshua a couple of days ago.
My former cousin-in-law, 42 and remarried, just found out the baby she is pregnant with has DS. I thought of you and how special your family is when I heard the news. I really do think families with a special needs person are great. Siblings become much more caring, compassionate people when they grow up with someone they love who is special needs.
Get well soon!
Thanks Karen, your “cousin” is about to embark on a life changing journey. Yup, God’s a master at piecing together families. This child will be a gift to the whole family. I hope you’ll keep me posted. xo
Aunt Pinkie says
Another insightful story about Hudson. Hope YOU are feeling better. Thanks, Allie, for sharing your heart! And I hope the basketball she’s are exchanged for the right sizes and one for each foot!
Thank you A. Pinkie, shoe order has been corrected and basketball games are about to begin. I am feeling much better, thank you. I was thinking H might have been coming down with something again on Sunday, he was kind of clingy. But then he rallied. Phew. xo
Mandi Korn says
Since I just started following your blog, this is the first time I have read about your son. I have known a lot of special needs children in my like, my best friend of 7 years teaches special needs students, on all levels with many different needs and disabilities. I was able to visit her and her class often, and I loved being there and looked forward to my visits every time. I really love that you said “I think Hudson was the perfect child for our family”. I think it takes a strong family with bigger hearts than most to take on and be in love with a child with special needs, and I am glad to have found your blog so I can read about your family and this strength and love. I am glad that he is problem solving, and you are enjoying that aspect of his development. Its the little things that are important everyday and your a good momma, I can tell:o)
Awww…thank you so much, Mandi. Your best friend must be a very special person. I am amazed at the patience and love and kindness that Hudson receives from his wonderful teachers. It is such a gift to our family to know that he is loved and well taken care of when he is at school. I am also enjoying your beautiful blog, seeing life through your eyes and lens.
nancy mcmahan says
Your words always lift me up. Thank you
thank you friend
Hudson is such a gift to all that know him! He has the best smile ever! Pure joy!
He has a little way of wrapping around our hearts, doesn’t he… xo
Auntie Dawn says
You have to love his patience and motivation! Let’s just hope he doesn’t make it to the top of the tree!
Yes, let’s hope! xo
What a great post. So sorry you are sick and hope you feel better soon, as I can’t imagine what it’s like taking care of a special needs child when you are feeling yucky. 🙁
Thank you so much Susie, I am feeling so much better!!! Thankfully Jon is a huge help w/Hudson, I’m so grateful.
Great story Allie…You are such an amazing mom. Your story did remind me how much we grow through our children, but most of all it shows that you and Hudson share a same quality: determination!
Miss you my friend
Thank you friend, we mommas do what we can for our kids, right? And yes, H & I are both determined. As are YOU! Love and miss you too. Hope you’re finding little snippets of Christmas joy and peace along the busy way…. xo
Dear Allie, what a wonderful post. It is the kind of post that helps increase compassion because it increases understanding. I truly appreciated reading about your experience and your perspective – the challenges, and also the growth and the joys. Hope you feel better soon friend.
Thank you so much Carina, and for being part of this journey, I always love hearing from you. I feel much better, thank you, and trying to get a lot done…hoping for health in the next few busy weeks.
Je peut comprendre que t’aime écrire sur ta famille ! Ils sont adorables! Je pense qu’avoir une sœur et un enfant avec le syndrome de Down donne une force insoupçonnable ! Et moi j’aime que tu me racontes les aventures d’Hudson, il est tellement mignon!
Je te souhaite un très beau mois de décembre!! Grosses bisous chère Allie ! xo
Un grand merci Eva , je l’aime toujours de vous entendre. Il est la vie de partage intéressant ensemble à travers les miles , est -ce pas? Je le remercie de votre amitié et je vous et votre famille de beautiul sont en appréciant les vacances espère … xo
Anu-My Ginger Garlic Kitchen says
What a wonderful story, Allie. You are such an inspiration for all moms. And you are an amazing Mom. Hudson is a lucky boy. I hope you are feel better now! Thank you so much sharing your wonderful stories. 🙂
Many thanks for the kind words, friend Anu. I feel much better now and hope to stay well! Enjoying all your beautiful recipes across the miles!
Linda Jenkins says
Allie, you always make me smile. I can truly appreciate your frustration, but more importantly your patience. You are a loving and compassionate inspiration to all of us. Hudson may try to get the angel, but why not? He is an angel!
He is a little angel, occasionally in disguise. HA. Thank you Linda, love to you and Jack also. Hope you are enjoying these busy Christmas holidays. I saved the sports section from the Concord Monitor where Jonathan quotes Jack….will give it to you next time I see you. xo
Cheyanne @ No Spoon Necessary says
Your writing is something I always look forward to reading, Allie! I think you are so brave, strong and beautiful. You are the type of woman we all aspire to be. You know my nephew is Autistic, so I am aware of the challenges related to raising a little one with special needs, but I am not fully responsible for raising Brayden (nephew). I always salute my sister and I salute you as well. They can be a challenge, but they are also a blessing in disguise. They teach us patience and show us exactly how unconditional our love can be. Thank you for sharing your journey with us, my dear. Cheers to you, Hudson and objects NOT joining in the off beat musical chairs game! xo
Thank you for your very kind and gracious words, Cheyanne. I’m just doing my best each day, like so many others, and many have a much more challenging road than I do. The days aren’t perfect but I’m learning to live a life of joy nonetheless. Also learning new lessons every day, as I know your sister is too. I hope things are going well for your nephew. I know very little about living with autism, but I read a wonderful book recently called Dancing with Max about a little boy named Max who has autism. It was written by his mom, who happens to be a single and courageous mom. It was an inspiring read and she’s one amazing mom. (I cried through most of it.) Thanks for being such a cheerful/kind part of my journey, I always look forward to hearing from you, makes my day. xo
Barbara Child says
You’re doing such a great job of staying l or 2 steps ahead of Hudson! He’s pretty quick in getting around now, so that’s a challenge! But maybe it’s also a sign of progress. Hope so. Try to smile through it all! God is using you in a mighty way to deal with this difficulty! LOL