I am Here

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Today is World Cerebral Palsy Day.

World Cerebral Palsy Day is a social movement, of, by and for the CP community. The vision of World CP Day is to ensure that everyone with CP has the same rights, access and opportunities as anyone else.

Cerebral palsy (CP) is the most common physical disability in childhood and is also one of the least understood. Doctors are reluctant to make a diagnosis, too many people receive ineffective therapies, too many individuals and their families lack access to basic information and support, too little money is being spent on research, and far too many societies keep people with CP out of sight, out of mind and out of options.

It is time to close the gap between the everyday circumstance and the real potential of people living with CP. Through World CP Day, we will join together to combine our resources, energy and knowledge. We will share our stories and best ideas. We will tell the world … I AM HERE!

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I am here, at a Ray’s game with Mommy

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I am here, catching beads at Gasparilla.

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I am here, working hard at school

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I am here, striving to maximize my potential.

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I am here, surrounded by my family

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I am here, living a life very much like yours. I may have a few more hurdles than most, but I am here . Hello my name is Mattie Spinner. I am 5 years old and I have cerebral palsy.

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Want to help me build a global movement to change the world for people with cerebral palsy?

Here are a few ideas:

-Tonight, join me, my friends and family at Piquant Epicure & Cuisine in South Tampa (October 5, 2016 from 6-9pm) for a special evening benefiting United Cerebral Palsy of Tampa Bay. Come enjoy appetizers and learn more about cerebral palsy and how we can all be a catalyst for social change. One free cocktail with a cash donation of any size.

Although not required, all donations received will benefit United Cerebral Palsy of Tampa Bay, a non-profit organization dedicated to guiding and assisting families and individuals with any disability or other barriers to achieve their full potential, resulting in community inclusion and independence. If you are unable to make it and would still like to donate, please click HERE.

-Come join us as we host the 4th Annual Hope for Mattie Charity Golf Tournament on October 29th. We still have spots open for players, sponsors and volunteers. For more information click HERE.

-Help fund the desperate need for research for treatment and prevention. Some US based organizations that are funding research and leading national advocacy efforts for the CP community are:

CP Now, LetsCureCPReaching for the Stars. A Cerebral Palsy Foundation,  Cerebral Palsy International Research Foundation

-Make a direct impact on Mattie’s life and help fund her next round of therapies by making a donation HERE.

-To learn more about Cerebral Palsy, check out this Slideshow. To learn more about Mattie watch her video HERE.

Help us celebrate World Cerebral Palsy Day and take action for the 17 million people across the world that are here, living with cerebral palsy. Please and Thank you!

 

Something Special

Mattie has started Kindergarten! Not just any Kindergarten class but a regular class at the same school as her brother and cousins! Jim and I have worked hard to make this dream a reality. It has been extremely important to us that Mattie have the same opportunities as her brother. We have spent countless hours researching, studying, making calls and advocating for her, and with the help of her school therapists, pre-school teacher, and the other 10 ladies that made up our IEP team… we did it. I am not going to lie… it was stressful to say the least, but the end result is Mattie is right where she should be. We are so grateful for everyone that has been involved in the process and helped to make this transition as smooth as possible.

It is not often that I cry but today the tears poured on my way to work. As I was walking Joba and Mattie to class this morning, at least 8 kids stopped to tell Mattie “hi”. I was slightly surprised by this as Mattie is in a new school and doesn’t know any of the kids. It turns out the letter we sent out to Mattie’s Kindergarten class was spread throughout the school. The letter was written “by Mattie” and explains how cerebral palsy affects her. At the end of the letter she says she wants to be your friend and asks that you say hi. I want to thank all of the amazing parents that took our letter to heart and taught their children not to shy away from a person with a disability. It means a lot to us and to Mattie.

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With Mattie starting school full time it is coming with many new adjustments. The biggest one being no naps! A full day of school followed by hours of therapy makes for one tired girl. I am struggling a little bit with this. It is important for Mattie to continue to get the therapy she needs but at the same time, is it too much? I just don’t know…

Our most recent trip to New York this summer was very eventful! We were able to see Mattie’s leg doctor and have her fitted for new leg braces (thank you to everyone that made this happen through Run for Hope 5K and Lindsey and Russ’ Boston Marathon Fundraiser). What was the most surprising aspect of the visit to Dr. Jordan was he had nothing bad to say. It was the first time EVER that a doctor has told us he was happy with Mattie’s progress and felt that Mattie’s most recent surgery on her legs was very successful! What a relief! He also thought Mattie was close to being able to stand on her own! Jim and I got in the car after the appointment, looked at each other and laughed. It felt great for once, to leave on a good note. We continued on to NYC to see Mattie’s ABM therapist. Mattie had 7 ABM sessions while we were there. After coming home, Mattie has continued to hold her back upright and is able to sit more easily in different positions. She has really retained what she learned from those lessons! We will continue to go to Gainesville once a month for ABM therapy sessions and are hoping to make it back to NYC for more ABM lessons in November.

 

It is never easy juggling life, especially a life that involves a special needs kid. Some days are harder than others but at the end of the day when Mattie is giving us hugs, kisses, and noses, I know that every second of the hard work is worth it. Together we are helping this little girl grow into something special. God has blessed us with such an inspirational daughter. I could not be more proud of her.

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Mattie’s next fundraising event, The 4th Annual Hope for Mattie Charity Golf Tournament is taking place on October 29th 2016. We are looking for players, sponsors, and donations for the silent auction. All proceeds from this event will help fund Mattie’s ABM therapies and a special needs toileting system that she so desperately needs. For more details on the The 4th Annual Hope for Mattie Charity Golf Tournament and how you can help, click HERE

How far we have come

Yesterday at the Doctors Office

9 Year old boy: Why is she in a wheelchair?
Me: She was born with cerebral palsy. Her brain has a hard time telling her legs what to do
9 Year old boy: So she can’t run or jump or climb?
Me: Not exactly, she needs help to do all those things
9 Year old boy: Will she walk when she is older?
Me: She is working on it.
Mother: Brandon!
Me to Mother: Its ok, I don’t mind answering questions, most of the time kids are more curious than mean
Brandon: That makes me sad.
Me: Why?
Brandon: Because she can’t walk
Me: Don’t be sad. She is not sad. She doesn’t know that she is different. She actually thinks she is a princess with really cool light up wheels
Brandon: Is she really a princess?
Me: (I wink at him) Yes, she is!
Brandon: Well she is pretty like a princess
Brandon to Mattie: You are pretty
Mattie: (continues to ignore conversation because she is watching a princess movie on my phone)
Nurse: Mattie Spinner
Brandon: Thanks for talking with me
Me: Thanks for talking with me (smile to myself and think about just how far I have come)

This morning:

Mattie : Mommy – I want to hear the princess songs
Mattie:  Mommyyyyyyyyyy – Belle first then Rapunzel (giggle) then Tianna
Mattie: Mommyyyyyyyyyyyy – Did you hear me? I want to hear the princess songs
Me: Ok Mattie, give me a second to get to a red light
Mattie: Mommy – Put it on!
Me: Mattie, Is that the polite way to ask for something?
Mattie: Pleaseeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee can I hear my songs?
Me: (music is turned on in order: Belle, Rapunzel, and Tianna)
Mattie: (giggles) I love the princesses. Mommy – Did you know I am a princess? My name is Mattie the Mermaid and I am the most beautiful princess mermaid ever.
Me: Yes you are babe!
Mattie: (starts singing along with Belle)
Me: (smile to myself and think about just how far she has come)

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3 years ago if you would have asked me if Mattie would be walking by 5, I would have said absolutely! I know I am a positive person, but I really did believe it. Now here we are, making birthday plans for her 5th birthday (ok I know it’s still 2 months away but I am a planner!) and Mattie is still not walking. It’s definitely not from lack of trying, surgeries or the countless hours at therapy. There was a period in my life that I felt stuck. Mattie was not really moving forward and not really going backward. I was struggling with my feelings about the progress Mattie was making physically. I was struggling with accepting a different path, a path that included her not walking by 5.

There were days I wanted to punch a wall out of frustration and days I wish I could call out sick and pull the covers over my head and cry all day. I never did these things although for my sanity (and Jim’s) I probably should have. I kept my head up and continued to push both myself and her forward. Somewhere along the way I finally accepted that Mattie would do things at her own pace and no one else’s. I finally accepted that Mattie would not be walking at 5. It has taken me a long time to come to terms with it. It just is what it is and just that. Mattie is almost 5 and can’t walk on her own AND I can finally say… I am OK with this.

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I think part of the reason I am moving on is the fact that Mattie has continued to develop in so many other ways. Her vocabulary is right on target. She has memorized complex songs and can sing them the entire way through. She is actually very witty and loves to say and do things to make us laugh. She can maneuver around an iPad better than me. She is super loving and will come give me a kiss and tell me she loves me when I least expect it. She loves when I hold her and dance. She thinks she is a princess and I never correct her.

 

Although I have accepted Mattie will not be walking by 5, I haven’t given up hope that Mattie will walk one day. She is closer than she has ever been. The surgery this past December has really helped her loosen up. She bends her knees like she should and she is starting to realize that she has 2 legs that can do separate things. She has been able to pedal a bike all by herself. Mattie continues to rock her crazy therapy schedule of speech, horse therapy, PT, OT, and ABM all with a smile on her face. So we all push on, in hopes that Mattie, the mermaid princess, will someday be able to walk, while winning each day at life.

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Embrace it

This year has gone by in a blur. Starting with an eye surgery this past January, countless therapy sessions (162 just this year alone), meeting a life coach and now ending with another surgery in December. This is our life. Welcome.

Mattie had a surgery called SPML almost 2 years ago. Only 2 doctors in the US perform this type of surgery. SPML is where the doctor goes in and pokes tiny holes in the fascia of the muscles. This helps to expand the muscle so it’s not so tight without having to actually cut into the muscle itself. Mattie originally had it done on her hamstrings and behind her knees and ankles. This link will explain it in a little more depth.

After surgery, we kept having issues with Mattie’s knees. She would hold them straight and not want to bend them. We spoke with her surgeon and her orthopedic doctor numerous times and everyone agreed to “wait and see” hoping she would work it out. After seeing Mattie’s ABM therapist in NYC this summer & with a push from Mattie’s PT, we decided it was finally time to do something about it. A week later, I had another phone call with the surgeon. We decided to move forward with a second surgery. He is going to release the rectus muscle and put an alcohol block in that nerve with the hope that Mattie will not be so tight. Although I try not to have regrets, I wish we would have done this sooner. As much as it sucks to have to put her through another surgery, I have faith that we are making the right decision and hope that this surgery is one more step toward our ultimate goal of Mattie walking.

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This morning I told Mattie that we were going to Texas in December to see her Doctor who was going to fix her legs. Mattie replied with “My legs are sick”. I smiled at her and said he would help her to walk one day. She replied with “I have a walker that helps me walk”***. Ahhh to be so innocent and so unaware. Why can’t we all be like that? I am afraid the innocence that we see in her will start to go away in the next few years. She will realize that she is different. She will realize that she can’t do some of the things other kids can do. We are trying to teach her that hard work and perseverance pay off, and are determined to make sure she is confident, strong and resilient.

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As we make our way through this special needs journey, I hope that we can teach those that are scared of disability that it’s ok. Disability happens, even when you least expect it. It is a part of life. We have learned to embrace it. We will continue to hold our head up, smile, and appreciate what we have. We will continue to set an example for our children, family, friends and complete strangers that no matter what life throws at you, approach it with love and kindness because at the end of the day, isn’t that what it is really all about?  God gave us a miracle and every day I thank him for blessing us with this beautiful, spunky, witty, little girl who gives the best hugs and melts my heart with her I love you’s.

Today is World CP Day. For more information about this day click HERE. For more information about Cerebral Palsy click HERE

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*** Before everyone goes crazy with the walker picture, I just wanted to disclose that Mattie needs max help when using a walker. Usually someone has to stand behind her when she is using it. This picture was taken at a moment where she was able to balance herself and walk a few steps on her own. Progress!

Thank You!

We wanted to take a moment to say thank you to everyone who ran, walked, volunteered, donated, and sponsored the 3rd Annual Run for Hope 5K and 1 Mile Event. With your help, this year’s race was a huge success! We raised over $3,000, all of which will go directly to Mattie’s therapies.

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Congratulations to the male and female winners of the race, Romeo Gomez and Kim Myers!

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Mattie was there on race day, cheering on each runner as they crossed the finish line. 588

Mattie posed with all the winners and she was all giggles!

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Check out all of the fantastic pictures from the day HERE

Race results are posted on Cool Running HERE

Don’t forget to mark your calendar for our next event, The 3rd Annual Hope for Mattie Charity Golf Tournament and Dinner Banquet. It will take place at Heritage Harbor Golf Course in Lutz on October 17, 2015! Registration will be opening soon.

We are always overwhelmed by people’s willingness to help us. Your generosity is greatly appreciated and goes a long way towards helping Mattie reach her potential. From our family to yours, thank you.

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Cerebral Palsy Awareness Day

Today is Cerebral Palsy Awareness Day. To me this is a day to spread awareness, love, and hope. Today is a day to take a stand for the prevention, treatment and cure of Cerebral Palsy. I know that most people don’t know what cerebral palsy really is. Heck, I didn’t really know until Mattie was diagnosed with PVL.

Mattie has been diagnosed as having moderate spastic diplegia cerebral palsy. Broken down this means that Mattie has brain damage that affects the way her brain controls the muscles of her body (cerebral palsy). Mattie’s legs have a tendency to be tight and stiff, which limits her movements. She has no balance. Her arms and hands are slightly affected (spastic diplegia). Using the GMFCS scale, Mattie is a Level 3.

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What does this mean to me, us, her…
At almost four years old, Mattie still can’t stand without support or walk but she is a bad ass frog hopper! Her smile is infectious and when she tells me she loves me, my heart melts a little. She works hard everyday learning and becoming more in touch with her body. This is one tough girl. I know our perseverance will rub off on her. We are teaching each other to be kind, compassionate, strong, courageous, ambitious, and hopeful. We take things one day at a time, one milestone at a time, however slow they may come. We are learning and growing as a family with love and a little girl leading our way.

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So… take a moment to read a little about Cerebral Palsy:

  • Cerebral Palsy is the name given to a condition which affects the way the brain controls the muscles of the body.
  • Cerebral Palsy is the most common physical disability in childhood. It is estimated 10,000 babies born in the US each year will develop Cerebral Palsy and that 764,000 children and adults in the United States have one or more of the symptoms of CP.
  • Cerebral Palsy has different causes, and affects each person differently.
  • Many causes of cerebral palsy are still not known or understood. Injury or changes to the developing brain are associated with Cerebral Palsy.
  • The condition is not hereditary and there is no cure.

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There is no specific federal money for cerebral palsy set aside at the CDC or NIH. There is no true standard of care for those with CP. There are a handful of CP leaders and active advocates who are working hard to help propel the CP community ahead. So on this day of Cerebral Palsy Awareness, please consider taking a stand with Mattie and help our community by donating to fund desperately needed research. Some US based cerebral palsy organizations that are funding research and leading national advocacy efforts for the CP community are:

LetsCureCPReaching for the Stars. A Cerebral Palsy Foundation,  Cerebral Palsy International Research Foundation

Let’s acknowledge this day by taking action for the 17 million people across the world that have Cerebral Palsy. Please and Thank you!

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Beautifully Broken

I have sat down to write an update several times now and my mind just goes blank. Maybe its writers block (although I certainly don’t consider myself a writer) or maybe its me not wanting to put it all out there anymore or maybe I don’t want Mattie to read all this one day and decide to hate me even more (she is like 16 in this scenario). Either way, I know you have wanted an update so here it goes.

Rewind to a few weeks back and Mattie, Joba and I were at Publix. The kids wanted to ride in the “car cart” that I disgust so much, but I was feeling nice that day so we went about our shopping in the “car cart”. We were hanging out in the deli for our number to be called when this older woman came up and told me how cute my kids were, how she thought having a boy and a girl was perfect and what a perfect family I had. Meanwhile, Joba is hitting Mattie in the face and proceeds to take the rest of her free cookie out of her hand. I hear my number being called, so I just smiled at her and went about my business.

If only she knew…

just how imperfect we really are

that my heart hurts when Mattie tells me she wants to walk but she cant

that everytime I get my handicap hang tag out of my glove box, I feel a pang of sadness

when I see girls her age dancing and running, I sometimes want to cry

that everytime I run, I remember that she can’t

that I pray every night that she will be happy and loved

…would she still think we were “perfect”?

I like to call it beautifully broken.

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Mattie turns 4 in a few weeks! (on Good Friday to be exact or as I like to call it “D Day – The day we received Mattie’s’ diagnoses). I can’t even believe it! Where did time go? How did she get so big all of the sudden? I have tried to have no expectations when it comes to Mattie’s development, but I will be honest, if you would have asked me a few years ago if Mattie would be walking by 4, I would have said “absolutely”. It just goes to show that Mattie will do things on her own time and when she is ready. I sometimes feel like Mattie’s progress lately has been SLOW. I have to remind myself (with some help from her therapists) that what Mattie is doing today, she was not doing a year ago. Progress is progress. Right?

Here are a few things Mattie can now do that she could not do a year ago:
Sing
Pretend play
Pull to stand
Raise her butt off the ground while kneeling
Use a spoon
Talk in complete sentences with good articulation
Make jokes
Count to 50
Maneuver her wheelchair on her own

Writing it out makes me realize just how well she is doing and how she continues to learn and make progress no matter how long it takes. With your continued support, my hope is that next year’s list of accomplishments will be even longer. And who knows, maybe we will even see walking independently on there.

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Continued Support

The 2014 Hope for Mattie Charity Golf Tournament was an amazing success! We raised approximately $8,000! Every penny raised will help pay for Mattie’s new leg braces and continued ABM therapy sessions. We owe a HUGE thank you to all those that participated, volunteered, sponsored and donated. We are forever grateful for your generosity. Mattie’s success is a direct reflection of your support. Thanks for being on her team! The pics from the 2014 Golf Tournament are posted HERE.

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We would also like to take this opportunity to kick off two new fundraisers just in time for the Holidays! 

In the spirit of the upcoming season, we introduce the…
2014 Hope for Mattie Holiday Ornament!

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All proceeds raised from the sale of the Hope Ornament will go directly to Mattie’s ABM therapy. For more information or to order your ornament today, CLICK HERE

Back by popular demand….  the perfect gift for any football fan…

Between now and December 4th, we will be raffling off a Rob Gronkowski Signed Jersey! The jersey will be personally inscribed by #87 himself and signed. For every $10 donated, you will be entered into the drawing (example: $10 donation = 1 chance to win; $50 donation = 5 chances to win). The winner will be announced on December 5th!

Click the link below to make a donation and be entered in the drawing!

Donate

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Everyday holds the possibility of a miracle! Thank you for your continued support. 

World Cerebral Palsy Day

Today is World Cerebral Palsy Day, a day that’s all about ideas that will change the world for people with cerebral palsy.

“Last year’s winners include a designer walker and a spill-proof cup. I have an idea—but the thing is, it already exists. The concept: More research for cerebral palsy. Some 17 million people across the world have cerebral palsy, and an estimated 350 million are closely connected to a child with CP. It is the most common childhood physical disability—and yet, there’s been a severe lack of federal funding for research into treatment and prevention.” – Ellen Seidman

So your asking what can I do on this day?

If you have an idea to change the world for people with cerebral palsy go to: http://en.worldcpday.org/

Or

Help fund the desperate need for research. Our US based cerebral palsy organizations that are funding research and leading national advocacy efforts for the CP community are:

LetsCureCPReaching for the Stars. A Cerebral Palsy Foundation,  Cerebral Palsy International Research Foundation

Or

Make a direct impact on Mattie’s life and help fund a trip to NY so she can get new leg braces by making a donation HERE.

Lets take advantage of this national recognized day and do something for the 17 million people across the world who have Cerebral Palsy. Please and Thank you!

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The New Normal

I know that I have been silent for awhile now. I am not sure why. When I try to sit down and write an update I am not even sure what to write anymore. It seems like life went a bit crazy (whirlwind) last October with selling our house, moving, Mattie’s surgery in TX, and then a trip to NYC for therapy. November and December went by in a blur with trying to help Mattie with her new legs, unpacking, and trying not to get too stressed out about the upcoming holidays. Jim and I were spent. We were going through the motions. We had hit bottom.

Then one random morning, just after Christmas, I woke up and felt ok. Nothing particular happened leading up to that morning but I realized for the first time, we actually enjoyed the holidays. We ended up spending a ton of time with the kids and managed to find time to reconnect. We had no where to go but up, so we did. It was as if a blanket of calmness and peacefulness washed over us. For me, it was finally about acceptance of our life. I have written before about the acceptance of having a special needs child, but acceptance of the life that it brings is different.

We are out of town 2-3 times a month for therapy and travel every 3 months out of state for ABM. Mattie has some type of therapy every day. It is hard on all of us. We have finally accepted that this is our life right now and accepted that this won’t be forever. I guess this is our new normal. I am hopeful at some point in the next few years that things will slow down for us. I know that these are prime years for Mattie so we all push on. Our “non-new years resolution” is to take the time we do have with the kids and try to enjoy it. Our weekend trips for therapy are spent living out of a hotel, but instead of hating it like we have in the past, we have learned to have fun with it. We have managed to become more efficient and better at balancing our everyday life.

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Mattie is really making good progress. She had SPML surgery in October. This has allowed her to long sit, side sit, and pull to stand. She continues to have trouble with her knees and does not like to bend them, the one downfall of the surgery. This is not common at all according to her surgeon and ABM practitioner in NYC. So we work hard at bringing attention to her knees. Mattie will tell us “I want to stand up” “I want to walk”. I love hearing her say this. She is working hard everyday to do what we take for granted. She is determined and motivated. With those two traits this girl will be walking one day!

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Thanks to our very generous family, we were able to take Mattie to Disney for her birthday. For 3 months leading up to her birthday she would tell everyone she would see (strangers and all) that she was going to Disney World. We had no plans to take her at that point, so where did she come up with this idea? She is a bright one. I guess she figured if she told enough people that she was going, she would! I could not say enough amazing things about Disney and Magic Kingdom. They were great with her. Mattie and Joba had a lot of fun, stayed up late for fireworks, and had breakfast with Minnie & Goofy. Jim and I were worn out but it was a nice mini family vacation.

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Since Mattie just turned 3, we had her official IEP meeting a few weeks back. In our state we have a program for kids 3-5 years old that are developmentally delayed. It is a pre-school program to get them ready for mainstream kindergarten. We had to do several evaluations to determine where she would be placed and what services she would be offered. We were given a choice of 2 different schools. One school has a physically impaired (PI) classroom with a full time nurse on staff. The other school has more of a pre-school type setting (EELP). We were able to visit both classes and make the final decision. We both felt the PI class would be too restrictive for Mattie so we choose the other school. From what we saw, Mattie will be the only child not walking but we feel like that will motivate her more. The kids in the class were so cute! 5 little kids, all with different abilities, coming together to learn. We have opted to start Mattie in August since Joba will be starting kindergarten at the same time.

The actual IEP meeting went better then anticipated. We prepared by researching, reading a fantastic book on the subject, writing our goals and a draft IEP. We knew going into the meeting that Mattie would not be offered speech services because she had passed the speech portion of her evaluation. She really is doing well talking, but needs help with articulation (not everyone can understand her). So we will continue with speech therapy outside of school. Mattie was offered PT and OT through the school. At this point we left both on her IEP until we can meet with the actual PT/OT to determine what type of work they will do with Mattie.

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Today I will leave you with a promise to update more and post more really cute videos.

Here is one from this week. Mattie threw her bowl on the ground so I picked it up and told her that if she threw it down again she would go to time out. She looked right at me, threw the bowl down and said “I wanna go to time out like Joba” and started laughing. So with my most serious (hiding my laugh) face, I told her “time out is serious, it is not meant to be fun but a punishment”. She answered back with “I wanna go to time out”. So she did 🙂