BE AWARE THAT THIS VIDEO HAS A CAVALCADE OF EMOTIONS FEATURED.
Maddie had gone 4 years without getting on a bike because the last one we got her she constantly struggled with and she ended up falling and hurting herself pretty badly the last time. (This included bumping her front baby teeth and making them wobbly.) She spent the past 4 years feeling jealous of typically developing kids like her brother and sister who rode their bikes with no problems. Maddie wanted to ride something so much that for xmas we got her a rip rider. (a big wheel type trike which can spin in the back) Even though she was a good foot too big for this, she still has enjoyed it for the past few months, but it was time to have her try something her own size.
So I researched all around to find a recumbent bike (adult trike type) that was sturdy, but somewhat affordable. (Around 400 bucks instead of the 1k-2k offerings that were the price tag for most of them.) We got the delivery from Amazon and Maddie was over the moon. It was the 1st thing she has ever gotten that she thought was cool. You read that right, THE 1ST PRESENT IN HER WHOLE LIFE THAT SHE WAS PROUD OF. Like her the 3 wheeler was different than anything else on the block, but was gorgeous and hard to take your eyes off of.
You will see the thrill of victory and the agony of defeat that happened over a few days period. She ends up having an accident that causes her to violently bang her mouth on the concrete, popping out her big, beautiful 2 front teeth. After reinserting them a couple hours later, the best case scenario is that she would keep for a couple of years. The pain was immense. The cost will be just as shocking to the system, as I suspect we are looking at around 10 grand when the whole process is over. Oh and who knows how she will manage false teeth when it comes time to have to put them in.
Sorry to use this post as a bitch-fest, but it’s the world our family lives in. I’m tired of how my girl never seems to catch a break. I really appreciate the kind things people have offered up after seeing the video. That does make it a little better:) Ultimately, like so many families of kids with disabilities, we will push on through the emotional and financial costs that life seems to constantly push our way. We have no choice because my girl Maddie deserves the best we can manage.
Today’s Happy Monday discusses how Maddie getting up really early because she’s excited for her new camp:( We also meet an important teacher who has meant a lot to Maddie. Bonus music clips from Chemical Bros and the Cult.
Maddie is starting to get used to her different schedule of school being out. One MAJOR help is that after 8 years of waiting, we finally have been approved for the medicaid waiver which among other things, allows us a few hours on the weekend to have a respite provider to keep Maddie busy. Rachael is her name and she’s really bonded with our girl.
The summer has been tough for Maddie as she misses school, but she is starting to get back to her normal self. She had a great Monday and to celebrate we go to her favorite pizza place, Marcos!
The Walls have been closing in on us this past couple of weeks.
Summer continues to be difficult for Maddie, just like it is every year. We have plenty of strategies to try to keep her from meltdown, but they are often as impenetrable as the 1985 Bears defense. Her big thing now is to focus on thing that she stresses out about and then when that is solved she is off to the next stress.
NOTE: Most of our newer happy Monday videos will happen on Sunday night, as it’s become too difficult to get them done on Monday morning. This one shows how she was most of the afternoon on Sunday. The last part of video before she sings Happy (you might have heard this song–we have at least 3000 times) shows her this Monday morning before camp still struggling.
Here’s a positive to go off on. She had a great day at camp on Monday. Let’s hope the rest of the week goes better.
For parent with developmentally disable children summer vacation is a double-worded profanity. I know I say other 2 word profanities more often from June-August. Maddie loves school, this is why these videos are called Happy Monday. She needs the structure. Today we look at some of the more mild elements of the past week. Today is truly a Happy Monday for me as Maddie started camp! I love her, but I need a break after a long week and I just can’t give her the type of schedule she craves that a special needs camp can do.
3 year old Maddie looks in to her early childhood class on her first day of school.
A very happy Monday edition as last week Maddie had a orientation trip as she moves up from elementary to intermediate school for next year. Bus ride, new classroom, basketball hoops, and lunch in the cafeteria. Best day of the year for Maddie? Might have been.
The other day Maddie came home in a bad mood and proceeded to fixate on one question: what is for dinner? I finally responded with Chicken. Not the answer she wanted, but you can’t have pizza every day. She was out of control until I got the camera out to film her behavior. This short video shows my girl’s autism outbursts, but is also funny and at the end shows her sweetness again. That is how I would describe my girl. Unpredictable, funny, and sweet.
Madeline Long is a 10 year old girl on the autism spectrum. She has become a minor star among people who watch her weekly Happy Monday videos, as these fans have been taken in by the sweet charisma that she has for life. Maddie greets people at the start of the week with the phrase Happy Monday. I’m sure most of you are wondering, And what is so great about the start of the week? The answer is pretty simple. When you are someone who craves a schedule as much as Maddie does, you are confused by the lack of structure that a weekend brings and love nothing more than going back to the regimented life that school provides.
How would I describe Maddie? She’s manic in her energy levels. Her attention span is very limited. Because of these things her interests in life are active be it basketball, swimming, or pretend play. Those of you that think most kids on the spectrum are like zombies sitting in front of the TV–well spend a day with Maddie and that notion of yours will disappear. Here’s another thing that might surprise you. She’s very much a people person, as long as they are adult people who facilitate helping her do the things she wants to do. She rarely connects with peers because despite her sharing the same chronological age, her developmental age is more like a 4 year-old, so her play reflects that.
I give you this background about Maddie so you can understand how rare it is for her to display the calm nature Maddie offers up in the video below. I have seen Maddie be this way very few times and it’s always been when she is around another person with a developmental delay that is more global in nature than her own. She has no Rainman savant-like gifts, but Maddie does have an instinct to go inside herself and be the calm vessel that the person she is with needs at that point. As much as I would like to have someone to help me beat the Vegas house at blackjack, I wouldn’t trade it for the sensitive trait my girl has in dealing with people with bigger challenges than she even faces.
The other person in this video is 11 year-old Matthew. Besides being on the spectrum, Matthew was born with tuberous sclerosis. The very non-medical description is that he has non-malignant tumors that can pop up all over. When he was in-utero he had one of these tumors in his heart. He has battled way more than what you and I have had to do to survive in life. Don’t be fooled by his sweet smile, this little guy is 100 percent American tough guy. Matthew would have the right to call Chuck Norris a wuss.
Maddie and Matthew met through Special Olympics basketball. On the court Maddie is like a lot of NBA players, as her focus wavers when she is on defense, but she had a successful season as she got through the noise and distractions that in the past often had her emotionally unable to stay on the hardwood. Basketball was newer to Matthew and he struggled most of the year to even take his hands off his ears. The whole thing often just seemed too much for him, but that is one of many of the great parts about the Special Olympics. No judgments. I’m not a big fan of cliches, but I do truly believe that so much of life is just showing up and my man Matthew did, despite how tough it often was for him.
At the end of the season, Matthew’s wonderful parents invited the families of the teams to a celebration party at their house. When you have a child on the spectrum you don’t get invited to too many parties and you are very unlikely to attend anyway, as the atmosphere isn’t generally conducive for the challenges that are always at hand. This was a different type of party, as the vibe was perfect for all the kids. One player was absent, though, Matthew. He was holed up in his room the whole time. At this point I should mention that the one teammate that I had noticed during practice and games that Matthew would take his hands off his ears for was Maddie. He had even hugged her a couple of times. Knowing this I mentioned to Maddie that we should go into Matthew’s room and see if we could get him to join the rest of us at the party. The video below is what happened when we did this.
Life is much different for Maddie and Matthew than it is for typically developing kids. Having said that, what I see in this video is a 10 year-old girl who wants to be a good friend. And I see an 11 year-old boy who has fallen for the charms of a pretty girl. Autism spectrum or not, that seems pretty typical to me. The world can be so complicated, but so simple at the same time.
Scott Long is a nationally touring standup comedian who discusses the journey of his daughter’s autism during his performances. His latest cd, Good Dad…Not a Great Dad has gotten great reviews including an A grade from Under the Gun entertainment website. They said about the cd, “I’ve listened to and reviewed 52 comedy albums in 2013, but Scott Long’s is probably the one that touched me most.” The website that Scott does with his daughter Maddie is itsanautismthing.com.
The song used is titled Brand New Day. It’s by a great artist named Joshua Radin. You should check him out at his website or buy his stuff on iTunes.
I hope all Mom’s had a great day on Sunday, but today is a special shout-out to the Mom’s who care for a child with a disability. There is no more difficult job than to handle the constant ups and downs of a child with special needs. You do your best work behind close doors without credit going your way, but I promise you that those of us that do know you, truly respect like you no one else. Maddie (and our family) has one of the best Mom’s and we are very lucky for it.
