Wednesday, October 29, 2014

It's my sixth blog anniversary, and I have a little wish

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Once a year, on my blog anniversary, I make a blog wish. This one is pretty simple.

When I started Love That Max in 2009, one thing I hoped to do was inspire parents of younger kids. I felt so anxiety-ridden when Max was a baby, and hearing about the accomplishments of older kids with disabilities reassured me like nothing else could.

Max is now that older kid. (Although, amazingly, I myself am not aging at all!) And it would make me very, very happy to hear what insights, perspective and hope he's given other parents. If you do not have a kid with special needs, well, I'd love to hear what Max has taught you about special needs, another key reason why I write. 

Max never had a choice in being the focus of this blog; I made it for him. Someday, I would like for him to understand just what kind of impact he has had. So, actually, I have a second wish here: I hope that he will be able read this blog. Feel free to address your comments to Max.
 

27 comments:

  1. Through your blog I learned about cerebral palsy and became stronger in my identity as a person with a disability(hearing loss). Happy Blogversery Ellen!

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  2. HOPE! And a chance to understand that we're not alone and the feelings we have and challenges we're facing are not unique. We really appreciate how you approach even sensitive topics with candor (and sometimes humor too!). Thank you Ellen and Max! Happy 6th Blog-versary!

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  3. Happy anniversary!

    This blog has been invaluable to me as I learn more about CP and special needs parenting in general. I don't know any moms who have survived or are going through the things we have, and it's nice to have a safe place to go to hear it. After D was diagnosed about 6m ago I went through a tough time, but now can see the light at the end of the tunnel.

    Fireman Max, thanks for being awesome!

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  4. Dear Fireman Max,

    The thought and care your mother has put into this blog is inspiring and it has- on more than one occasion- made me feel less alone when dealing with my own son's special needs. Thank you for letting us into your lives! My husband also reads it now and we both enjoy seeing your adventures at fire stations and new fireman's outfits. We enjoy reading about your accomplishments and fun with your sister.

    If I ever need a firefighter I hope you come to save the day for us!

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  5. Dear Max, I found your Mom's blog two years ago after my daughter was diagnosed with a rare genetic syndrome. You showed me that I could still have a happy, meaningful and content family life. And your Mom was so incredibly kind to me and sent me a personal email response in those dark days after diagnosis that I still re-read, even though she didn't know me and probably gets hundreds of emails. You are lucky, and so is she. Rock on, Max.

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  6. You have completely opened my eyes and heart to kids and people with special needs. I look forward every day to your posts and getting to hear about Max and Sabrina. We adopted my niece who has ADHD, LDs and anxiety disorder and you have inspired me to see her as a whole kid and not just her issues when on some days that's all I can focus on.

    Go Fireman Max!!!

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  7. Dear Max, through your blog I've learned a lot of things about living with special needs, even though you and me have different diagnoses. You've shown me that nobody should ever let limitations keep them from doing whatever they want. You've also shown me that it's ok to love what you love even if other people might not get it, cause all that matters is that it makes YOU happy. But probably the best thing I've learned from you is that the world is just a better place when you meet everything with a smile, something you're a total pro at. Keep on kicking butt, Fireman Max.

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  8. I read this blog religiously everyday but seldom comment. This blog not only made me increase awareness about special needs kids, how their life is and the how strong their parents are it also made me a better person I feel. If I have to state one thing I learned from here, everyone deserves an equal chance.

    P.S. You are the cutest Fireman I know.

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  9. You and Max are both amazing, but what I appreciate most is that you keep it real! So many special needs parenting blogs make me feel like I am falling down on the job because I have other kids, work full-time, and don't dedicate myself 100% to therapies, etc. Your blog shows me that it's healthy and normal and that Julia will be just fine, even if I don't trek halfway around the world to see the latest and greatest CP specialist.

    Max, it is so exciting to watch you grow, and to see what a good brother, good son, good friend, and good fireman you are! I hope Julia is half as cool as you are when you get big!

    Sabrina, you seriously rock!! It is so hard to be the sister of a special needs brother sometimes, but I love seeing how you treat him like a normal brother...one that you love, but that also annoys you, because that's just what brothers do. You seem like such a cool girl, and I wish you lived closer so you could hang out with Julia's big sister. I think you'd have a lot in common!

    Dave, thank you for sharing your family with us. So many special needs dads check out, and it is great for my husband to see that there are other dads that really plug in. Your family is lucky to have you!

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  10. Fireman Max,

    First things first: You are awesome. Seriously. You might just be the most awesome fireman that I've had the pleasure of "meeting," and I've met a lot of firemen over the years.

    I'd also like you to know that when I first found this blog, I had just started tenth grade and I was feeling insecure about having cerebral palsy. My parents are so supportive, but I didn't feel comfortable talking to them about it, so I came here. I came here and I read about you and how you kick butt on a daily basis and how you face challenges that many people wouldn't even dream of facing. I smiled when I read about your fondness for spaghetti and for all things purple, and then for Cars 2, and now for firemen. I love that you love these things with everything you've got, and even more than that, I love that you aren't afraid to move along at your own pace. It reminds me of something a friend told me once when I was worried about what I was going to do in the future...she looked at me, smiled, and said, "You just do you."

    Max, I love that "you do you." I love that you, with the help of this blog and your family, have been able to support so many people simply by being Max. I've been following your blog for years now and it's really helped me develop confidence in who I am, and it's helped me come to terms with my cerebral palsy.

    Thank you for being so awesome, and keep on doing you! ;)

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  11. Dear Max,

    Firstly, thank-you! My own mom has always put all eight of us kids in the spotlight, and like you we have helped thousands of families find strength, comfort, and community. Also like you, we were at first just sort of along for the ride! Mom was always asking us and keeping us in the loop (as your mom does) but we were young, some of us unable to communicate verbally, and so in truth were weren't really in a position to understand. Though we did feel included, respected, and valued.... that was always understood! But I'm sure I don't have to tell you. I know you get it!

    Anyway, today all eight of us are advocates for equality, and avid sharers of our lives--though in different ways. But because we were loved so loudly by mom--as you are loved so loudly by your mom, sister, and dad--we are comfortable sharing and know the value of our stories.

    You, Max, have offered value by the truckload! You've put out fires that you didn't even know were burning, and built new homes for families who were running afraid in chaos and flames of prejudice and misinformation. Yet you, and your family, created a community of volunteers, full time and part time firefighters.

    You are an amazing firefighter, Max. Thank-you for encouraging us to do the same.

    Your friend and fellow thrown-in-the-spotlight-by mom advocate,
    ~Tsara

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  12. Max,

    You are awesome. You (and your mom) have taught me so much. You have been such an encouragement to me. I have a son, Jack, who is a lot like you, only he's five years old. It's like I can get a glimpse into the future when I read about you and that makes me so happy and relieved. We can do this!!

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  13. Dear Max,

    I used to teach kids about your age. One of my favorite things about teaching was learning from kids. Now you're my teacher. You have taught me and many others the joy to be found in purple, spaghetti and being a fireman. You've also taught me and many others to keep trying and that purple casts are the best. I can't wait to see what you'll teach me next!

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  14. Dear Fireman Max,

    I have a son named Zac that just turned 6 years old. Zac has cerebral palsy just like you. He uses a walker to get around and a combination of signs and speech to communicate.

    You have taught us many things. That Zac will do things in his own time. That having siblings that love you really rocks! Tips on toys and learning aids, tips for potty training, suggestions to help Zac with his reading and writing, and so much more. But most importantly, you have given us hope and a belief that Zac is going to be just fine. Thanks for everything Max!

    Kevin Jordan

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  15. Dear Fireman Max,
    You have taught me that Special Needs kids are amazing! Also, your mom is awesome and she has inspired me to create my own blog! She has reassured me that I am not alone - there are other moms out there like me and her. I especially like the Blog Link-Up on Fridays where I can share what I write and see what everyone else is up to. In short, your mom has created an amazing special needs community online, all because YOU are amazing, and she wanted to share that! So thanks for just being you, Fireman Max. Seriously.

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  16. Dear Max,
    I have read about you for several years now. I am amazed had how far you have come and wonder where all of this will lead you. You have learned so much and can do so many things that some of you own peers are fearful to even try. I love to see your face, with eyes that say I can while they smile to the world.
    I will never meet you face to face - that would be so fun - yet you have the best Mom who has shared so much of your life. She shares to good stuff, the hard stuff, and the bad stuff. This helps me to remember that I am not the only person on this earth who has problems and has to work hard to get life done.
    Thanks to you and all of your family.

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  17. When I found your blog several years ago I had no real exposure to anyone with special needs. I've always been curious about different conditions and the difficulties that come with them, but had never had any real opportunity to find out more. The way you write so openly has taught me an enormous amount about special needs and how the whole family reacts. I have learned how to see the person who happens to have a disability, instead of just the disability. I have learned how insanely strong Max and so many other children are everyday to overcome their challenges. I have learned how normal life can still be when someone functions differently than everyone else's "normal".

    The details and struggles that you post have opened the door to the special needs world for me, so much more than it had been before. You've showed the hard times along with the good, and I feel like I know so much more about how the everyday looks like. Thank you for writing and sharing your family's life with all of us. I know for me, you've given me the opportunity to open my eyes and expand the way I see the world.
    Shannon

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  18. Happy blogaversary! Sorry for the late comment (was finishing a history test), but I just want to say that I love Fireman Max, Sabrina, and your blog! People like you inspire me to strive to improve in music and other areas of my life.

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  19. Dear Fireman Max,

    I used to teach kids your age, and I wanted to learn more about how I could support families, so I started looking for blogs by parents of kids with super powers. That's how I found this place. Then when a friend asked us to consider adopting a little girl with cerebral palsy nearly three years ago, the medical records and all the unknowns for her seemed scary. Then I remembered you, Max. And you aren't scary. Knowing you through your mama's blog helped me and my husband say yes to loving our Zoe girl and becoming her family. She is a delight, and I am thankful for her every day.

    Keep up the awesome, Max. (You too, Ellen.)

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  20. Dear Fireman Max,
    Your blog was one of the very first that I found when I started blogging myself. My son Tucker had started going to a special needs preschool when he was three years old and I decided to write about our journey as I was feeling really lonely in the new world of IEP's, therapies, and all the rest of it. You and your mom helped me so much! You've created an incredible community here for so many of us to share our stories and to be inspired by you.
    I've so loved learning more about you here!!
    Thank you for your inspiration, your incredible smile, and for reminding all of us that life is beautiful even when it's not the one that we thought we'd have when we started out. Thanks for reminding me that nobody's life is what they thought it was when they started out and well just thanks!! Love to you and your family from me and my entire family!
    PS my son loves Cars 2, too! And firemen! His favorite color is orange, though. :)

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  21. I followed a link to your blog from something random ages ago, and I keep coming back. I'm a librarian and sometimes I buy books for students who are going to be OT and speech and rehab therapists, and you and Max and Sabrina give me ideas about what to look for - and I love that you share your family stories. I started getting narratives written by all kinds of people who both are and interact with therapists because reading your narrative made such an impact on me - pull your blog into a book and I'll buy it for the library!

    Hiya, Fireman Max! I'm going to hope with your mom that you'll read this yourself sometime because I can tell you love stories, and reading is my favorite thing, just like cruising the fire station is your favorite thing. Thank you for letting your mom tell so many good stories about your adventures. I know a librarian who loves purple as much as you do - she works at my library, and she painted one of the book carts bright purple! Everybody knows it's her special cart because she always wears at least one purple thing to match it.

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  22. Fireman Max,
    I have learned about cerebral palsy, ACC and Cars 2(which came in handy over the summer-Thanks!) from you. You are an amazing young man who will do great things in life and I hope you never let your disability stop you.
    From,
    Kathryn :)

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  23. Dear Fireman Max,
    I have been reading this blog for over a year and a half now, and I love keeping up with your progress! You (and your mom) have taught me that anyone who happens to have a disability does not have to let it define or even disable them. I have learned through this blog that cerebral palsy is not something about which to avoid talking; on the contrary, it is something to embrace. Thank you for helping me throughout the journey of accepting my own cerebral palsy. Max, you are a bright, perceptive and cheerful and loving kid, and you inspire me (not in a patronizing disability-related way) to live life with a positive attitude. I know that you will grow up to be a success because you know that the best things in life are worth working for and that you should never give up on your dreams. Because of this blog, I have become gradually less afraid of the disability stigma in our society, and I appreciate your mom's desire to eradicate it. Your mom approaches important issues with a welcome mixture of poignancy and humor, and I look forward to reading new posts every day. So I thank you, Fireman Max, from the bottom of my heart because you have taught me the best attitude to have. And I thank your mom, too, for this wonderful outlet that has helped be on both the best and the worst of days.

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  24. Max, you are an inspiration for me (as is your mom!). have so loved getting to know you from this blog and to be able to cheer on your progress. You have given me hope for my special son. Happy Anniversary!

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  25. I’ve no personal connections with anyone with CP, but you said you wanted to hear from folks like me too.

    On an intellectual-interest level, I’ve learned that my academic understanding of cognitive development and language acquisition, which is based on research on neurotypical development, applies to atypical development as well. It’s been fascinating to recognize basic cognitive/linguistic milestones emerging on their own timeline and in their own way (e.g., Max reaching the two-word stage by combining a spoken noun with a signed verb), and it’s been truly gratifying (and heart-warming) to be able to share my insights with you—lots more so than getting a good review on an academic journal article!

    On a gut-feeling level, I think “looking past the disability” has come to feel natural. One day I happened to walk past a family seated in an eating area in a busy store. The family included a guy in his late teens, who suddenly leapt to his feet, did a joyful, if somewhat clumsy, arm-waving little dance, and gave a happy non-verbal cry. My immediate reaction—not my oh-let’s-be-humane-and-open-minded reaction, but my genuine first reaction—was to grin and think “Enthusiasm is a contagious thing”. Pre-Max, would I have simply enjoyed the guy’s obvious enjoyment of life, instead of feeling sorry for his parents? Would it have brightened my day the way it did? I don’t think so.

    You and Max, separately and together, should be so proud of your achievements!

    All the best,
    Phyl

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  26. Max,
    Your angel of a mom has helped me to see my son through special lenses for the special kiddo he is! I have learned to enjoy life from his vantage point instead of prescribing the world's "norms" for him. THANK YOU for inspiring all of us!!!

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  27. Dear Fireman Max,
    You are such a fabulous kid, and I hope you feel so proud of all of your amazing accomplishments so far. I love your smile, your sense of humor, your gorgeous brown hair, and your desire to help people when you grow up. When my baby was a newborn, it was comforting for me to see tidbits about your friendship with your BFF Caleb. My daughter would be so lucky to have a loving and loyal friend like you when she's older! Thanks to you and to your inspirational mom for all of the joy and hope that you cultivate.
    Best wishes,
    Meredith

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Thanks for sharing!



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