A Library Card for a Penguin?

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Mackie announced yesterday that he wanted to head to the “Public Library”.  Dad did not get home from work in time and with all the snow we had to wait until today.  A snow day after 12 inches of snow fell and Mac was ready to go by 4:00 am.  But penguins and boys have to wait until its light out for our big trip to the library. Snow cannot stop a penguin and his boy from getting their books and treasures from the library. Penguins love snow and so does our boy.

Mac wobbled up the stairs and picked out is own clothes for the very first time.  I may not want to go look at what shape his armoire is left in.  But Mac had actually managed to put on his own shirt, granted it was backwards, but his arms were not all twisted in the sleeves as per usual I am trying to learn days.  The little boy that could just keeps trying and they said he would never, ever be able to dress himself as his arms and hands seldom cooperate with his movement disorder.

He sat me down on the stool at my computer and said “Mommy we need to chat.”  I listened as he told me that he wanted to get the Disney Playhouse CD again and a Veggie Tale sing along cd and that Furry wants to get Dr. Seuss “Put Me In the Zoo”.  We got Mackie’s Library card out of my wallet and he said Furry needed one to get his book.

I suggested to Mac that he could check out Furry’s book.  That was a no go.  Furry needs his own he announces.  Earlier this year he met his class at the library for the big day for the second graders to get their official library cards.  He said “Furry didn’t get one and he felt left out.”  I said penguins do not get library cards.  Mac replied, “Furry is a citizen and the public library is for everybody.  He lives in Lancaster and goes to school like everybody else.”  Mac had a good argument.

Talking with a couple of friends, I was encouraged to call the library and explain.  Yes living in a small community and having a Furry Booksigning and being a local author and Doctor Dad works in our community hospitals, maybe just maybe we won’t look too crazy with this suggestion? Taking a deep breath, I called in and explained.  There was no hesitation, and everything was set for Mac and Furry’s request at the library.

Mac put on his own boots, which is quite a feat.  He struggles to put on his jacket and I had to get it right side up.  And after trying for 10 minutes to get those “darn mittens” on, he asked for help.   With his little penguin backpack  on his back for our adventure to the library on this snowy day.

Arriving at the library he honed in on his favorite cd-shelf and he leafed through the cd’s to find Veggie Tales and I helped find the favorite Disney Playhouse CD while he was singing in his monotone voice, the theme song from Imagination Movers while the elderly lady smiled at his antics.  I reminded Mac that we are quiet in the library while Furry meeped in agreement and Mac said he forgot. Struggling to find the Doctor Seuss books, I encouraged him to head to the desk to ask for assistance.  Mackie made me proud as he went up to the librarian and asked ever so politely for assistance.  Not too bad for the boy who cannot talk somedays.   The library did not have his book, but the kind librarian told Mac they would order it in for Furry and will call him next week when the book arrives. We searched the book aisles and Mac helped Furry pick out another to read for this week.

We stopped at the kids activity tables and I couldn’t believe that they had a make a purple penguin activity.  Cut papers rectangles and glue sticks awaited the assembly of make a penguin.  Of course, Mackie wasn’t sure about the fact it was a purple penguin?  Penguins are not purple, don’t they know anything?  He struggled with the scissors and asked for help to cut the pieces for him to assemble.  Furry sat watching as fuzzy penguin fur and glue do not go together!

With Mac’s and Furry’s prized picks, off to  the desk and Mac and Furry went.  Mac politely asked for Furry to apply for his own library card.  Furry with Mac’s help hand over wing signed with Mom’s assistance the signature line and Furry  has his own official library card just like everybody else.  Inclusion… Acceptance… and a wish for a friend.  Mac checked out his cd’s and off to home we went to spend the afternoon listening to the theme songs from his favorites.  The sisters, remarked “Are we going to have to listen to this for how long?”  Until next week when the CD’s return to the library.  The sisters, said good thing for noise blocking headphones!

 

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Mac told me that he listens to his stories and Furry has eyes to read them.  Mackie loves the library and he is empowered to read, listen and hear his stories.  Mac struggles to see, but he finds his ways to “see” our world a glimpse at a time all the while moving his body to position it to see.  20 eye diagnoses is not going to stop him from finding a way.  Mac is empowered with his buddy Furry at his side and with a little encouragement from Mom and his friend, the world is opening up for our boy with triple autism, a chromosomal duplication, a genetic disorder, 110 diagnoses and the former foster child that they said would never ever do this or that, or sometimes we wondered if he would survive. But for Mac he is unstoppable.

Today rules can be accommodated to make a little boy and his penguin pal be included.

Thank you to the Schreiner Memorial Library in Lancaster, Wisconsin for today’s miracle and the library card for an Emotional Support Penguin named Furry and for  opening the door for more adventures with Furry.  Today was the first of many more library adventures for Mackie and a place that welcomes him and his companion with encouragement and accommodation.

The Little Town That Would did it again.

Mackie’s Mom

99 Days Around the World for FASD

mackiesworld99 Days! GO!(1)

Mackie and Furry are on a mission. A big job for a little boy and his best friend penguin. They are running around the world raising awareness about FASD. Fetal Alcohol Spectrum Disorders with their friends. From June 1 to September 9; that’s 99 days every year Mackie and Furry are busy rocking their Red Shoes.

Why Red Shoes? Learn more from my friends from Edmonton, Canada.

If you have noticed if you look in all the “It’s Mackie’s World” cartoons, Mackie is wearing Red Shoes. Mackie’s has FAS.  Fetal Alcohol Syndrome because his birth mother drank alcohol while pregnant.

Learn more about FASD from our friends at the National Organization on Fetal Alcohol Syndrome.

Yes, Mackie and Furry have friends all over the whole big globe.  From right here in the United States of America and Canada to on the other side of the world to Austrailia, New Zealand, to South Africa and many friends in many countries in Europe like Germany, France, the United Kingdom, Italy, Poland, and Spain so far.

Mackie’s friend RJ Formanek started wearing Red Shoes to start a conversation about FASD five years ago.  Mackie has been ringing the bells since he was very tiny and joined RJ and his friend Jodee Kulp and ever since have been teaching about FASD in a big way.

This cartoon “It’s Mackie’s World” is our way to share Mackie’s adventures in cartoon form in an endearing and educating way.

Head on over to Red Shoes Rock and learn about FASD and follow us as we Educate, Advocate and raise awareness about FASD.

Go Mackie and Furry Go! An extraordinary little boy and his penguin are spreading the word in a mighty big way!

Mackie’s Trivia:  Did you know that one in twenty children may be affected by FASD, and that it is more common than children with Autism and most will never be diagnosed?

 

Anny

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Ice Fishing Anyone?

itsmackiesworldString-StimmingMackie loves strings of all sorts.  Well, fishing poles cannot be left unattended!
Enough said.

Mackie’s Fact for the week:
Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders.

Learn more about stimming in Autism, FASD and in other developmental disorders. 

Mackie’s Mom

What do you do if you are intolerant to Ice Cream? Mackie found a solution

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When you cannot have dairy, nuts, dyes, gluten and you want ice cream, Mackie found a solution! Have you ever heard of mashed potato ice cream cones? Well Mackie loved his.

Kids with Fetal alcohol syndrome and other neurodevelopmental disorders often have food intolerances and those foods we love, have consequences for them triggering struggles with attention and behavior.

Mackie has food allergies and intolerances that make life challenging to keep him on track. Gluten-free, that is not a problem at our house as most of my family has celiac disease and I have been Gluten-free now for 35 years and raised my children without gluten in the house. Dairy free is more of a challenge, then add his intolerances with soy, proteins, and he reacts strongly to food dyes. Add in his peanut allergy and the fact we limit sugar as kids/adults with FASD crave sugar from their prenatal exposures to alcohol. Sugar addiction is real.

Taking off on Mackie’s Trivia thread: Did you know that many Red and other food dyes are banned in other parts of the world? And here in the US we feed it to our children without thinking. Recently Aldee Grocery Stores and other US manufacturers, restaurants are promoting dye free food products.

Did you know that even white foods or medications can contain blue dye? Marshmallows sometimes have blue dye, the same with some ice creams? I don’t get this!

Not only are food dyes in our foods but also medications. We have found dye-free over the counter medications but the pharmaceutical manufactures have not followed suit. We have to limit his antibiotics to ones that have no dye or his therapists, teachers and sisters will pay the price, but most of all Mackie. He will become over the top irritable and lose impulse control and do things he would never do normally. Mackie says “Dye turns me into a werewolf”. Be sick or in trouble from the medication? Not a good option.

Food labeling laws are wonderful and if I am not sure, we google the manufacturer and ask. Our pharmacists has been known to call to verify before giving Mackie medications. But the medications need the same level of labeling as are required of the food companies.

Mackie is no longer eating mashed potatoes ice cream and we have found coconut and almond alternatives. So far he only has a peanut allergy and not a nut allergy. Fingers crossed!

In the meantime there is science behind the fact Mackie reacts to food dyes. Check out the science and read this article. Banned in Europe, Safe in the US. and decide for yourself.

Mackie’s Mom

That Boy Looks Just Like Me

2.Mackies World Real Boy Adventures

Mackie’s cartoon character was drawn for the Red Shoes Rock campaign to raise awareness about Fetal Alcohol Spectrum Disorders.

One day I was working and Mackie noticed the cartoon Mackie and announced “Hey, that cartoon looks just like me.” Mackie meet cartoon Mackie and the idea for It’s Mackie’s World was born.

Creating an endearing cartoon that opens the hearts and minds to kids with neurodevelopmental dis-Abilities and who are medically complex.

Every Monday we will post a new It’s Mackie’s World cartoon and teaching post. Come back and check them out and giggle at our amazing boy and his sidekick Furry his Emotional Support Partner and their adventures.

Thank you for meeting Mackie!
Mackie’s Mom

Happy New Year

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It’s a New Year and we are at long last launching It’s Mackie’s World. 2018 is the year of educating the world about the extraordinary Mackie and his challenges and gifts he brings.

Visit us on Monday’s for an new Adventure with Mackie at “It’s Mackie’s World”. Enjoy the laughter and learn lessons that he has taught us.

Mackie Trivia Challenge:
Did you know that there was another cartoon that was inspired by another little boy with Fetal Alcohol Syndrome?

No peaking… do not read on before guessing.  It’s the rules according to Mackie.

Answer:
Hank Ketcham, the creator of Dennis the Menace, modelled the cartoon character after his own son, who had Fetal Alcohol Spectrum Disorder or FASD which premiered Dennis made his first appearance in the funny pages on March 12, 1951.

Were you stumped? We often are. Mackie is full of trivia and he loves to play stump the grownup with his incredible library of questions.

Thinking about how we can educate about Fetal Alcohol Syndrome and other disabilities we launched It’s Mackie’s World. Kids with disabilities are breaking through with the barriers on television, in advertising and it is time to follow in Hank Ketcham’s footsteps and make a new cartoon come to life.

It’s Mackie’s World is now live.

We hope you enjoy Mackie’s adventures!

Mackie’s Mom

Happy Holidays from Mackie

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Mackie where did you come from?  He had been busy and off silently moving around in the house.  Mackie requires external supervision to do well.  He has been silent and out of sight. I was thinking what did he get into and where do I search to find out what he was up to and what kind of mess do I have to clean up.

Well…  he had quite an answer that I hadn’t planned on.  The concrete language of kids with neurodevelopmental disorders requires thinking on how you phrase things.  Well, I didn’t think this one through.  But the answer was enlightening anyway.

Yes Mackie, you are our gift.

For those who do not know Mackie’s story. Mackie was adopted from the foster care system and he has Fetal Alcohol Syndrome plus two genetic disorders, has involuntary movement disorders and is medically complex.

Come back each Monday to see It’s Mackie’s World cartoons and share in Mackie’s adventures.

Happy Holidays from Mackie and our family to yours.

Mackie’s Mom