My sweet girl, and progress we have made.

I always get lots of loving comments and emails from you guys, asking if I’ve tried this or that for Ashley. For those of you who don’t know, Ashley has autism and global delay. After the Gluten, Constipation, and Autism post, I had even more questions than usual, and sadly, I don’t have time to answer them all individually. That’s why I shared some personal information on Facebook this week. I want to be completely open and honest with you, and it’s easier to reach large numbers of you here and on Facebook.

If you missed my Facebook update about this, you can still find it there. But I wanted to briefly talk about it here, since some more questions and comments came up as a result of it.

Speaking as a mom who has a child that was injured, and as a result has the development of a toddler (a toddler who isn’t potty trained), there’s a little secret about us that you may not know: Sometimes when we get suggestions for ways we could help our child, our brain takes that suggestion and this little voice in our head says, “Maybe if you had done that then things would be different (better) for your child.” It’s a very bad little voice that I call “the blame monster.”

What you have to know is that this blame monster is completely in our own heads. It’s in no way the fault of the person giving the suggestion. And it’s a monster that we parents of children with special needs must destroy, sometimes over and over again. I have personally defeated that monster more than a few times. I have found grace. Ashley will probably always live with us, and I’m so good with that. There is no one on this earth, other than my husband, with whom I would rather spend the rest of my life.

Now I want say a little bit more about MTHFR. I have to tell you, I didn’t remember that it was even called MTHFR until I got the issue of Paleo Magazine where my photo was on the cover. I was so crazy excited when I looked inside, and saw the article just before mine about MTHFR. I’m not exaggerating when I say that I was jumping up and down when I read it! It’s been seven years since they found the MTHFR mutation in Ashley. SEVEN.

In fact, Andy wasn’t even sure that I was correct about Ashley having it! Haha! So last night he got out Ashley’s box (yes, box) of paperwork to look for that medical record from so long ago. All he was sure about was the memory that the doctor said Ashley’s body couldn’t detoxify heavy metals, that she needed glutathione and phospholipids (Because phospholipids are the ones that can cross the blood-brain barrier. This is why Ashley takes Krill Oil. Not all fats are the same.). (As you know if you follow me, helping Ashley detoxify has been one of our primary objectives since she was four, when we first chelated.)

Andy found the paper, and sure enough it was MTHFR. Then I held my breath while he read to see which one/s she had. Since you asked, Ashley only has 1298. And if you have no idea what any of this MTHFR stuff is about, then you can read more HERE :-)

The great news is, since Ashley has been “regular” (You know, pooping every day. Sorry, I had to say the “p” word again :-), and grain-free, she has been able to detoxify much more easily. In the past (when she was gluten-free, but not grain-free), giving her glutathione alone didn’t do anything. Now that she is grain-free and regular I can only give her small amounts of glutathione at a time, because it’s become so effective. (You should never rush pulling heavy metals, and you should always work with a professional, like a DAN! doctor.)

Of course I wish Ashley would use the toilet, but otherwise all I want for her is to be the happiest she can be. When she is glutened or constipated she is not happy—That’s when the symptoms of autism reappear—The fits, screaming, throwing, crying. That’s why it’s so important.

A few other things about Ashley:

I wish you could hear Ashley’s laugh. She has the most infectious laugh I have ever heard. I dare you not to smile, for your face not to soften, for your heart not to melt, when you hear Ashley laugh.

She is my biggest snuggler. Zoe and Ginger are always busy working on this and that, but Ashley always has time to curl up with me and snuggle.

She loves to go to the grocery store. She tells everyone she passes, “Have a nice day!”

Years ago, when we still lived on the East Coast, my father-in-law sat us down at our kitchen table and said he had to tell us something. Speaking of Ashley he said, there are some people whose only job is to show love. To be love.

Ashley is pure love.

♥, Kelly

Read more under the post label, “Recovering Ashley.”

Comments

  1. says

    Thank you. You are so eloquent and graceful in your writing of such heavy and emotional things. I cried especially hard at the last part where you listed important things to know about Ashley. Thank you for sharing with us.

  2. suzieb says

    WOW, thesis the first I have read of your beautiful daughter and she sounds a lot like my matt. H has a genetic disorder, has the MTHFR gene mutation and as with your Ashely is on this planet to love and spread the love. THe snuggles the greeting everyone in the store. I look forward to reading more about Ashley.
    THanks for sharing her with us!

  3. suzieb says

    WOW, thesis the first I have read of your beautiful daughter and she sounds a lot like my matt. H has a genetic disorder, has the MTHFR gene mutation and as with your Ashely is on this planet to love and spread the love. THe snuggles the greeting everyone in the store. I look forward to reading more about Ashley.
    THanks for sharing her with us!

  4. Michelle says

    Kelly, you had me in tears right at the end. I’ve never thought of that last bit where you mentioned what your father in law said. That was extremely beautiful. I’m a mom of a soon to be 7 yr old girl who is autistic and completely understand what you say and feel. My little girl just learned how to use the washroom all by herself in the last few months, and to us it felt like it would never happen, and I was okay with it. Out of the blue, it happened. We also see a DAN doctor as well, as we’re following SCD/Paleo diet as well. It’s amazing how different she is since doing this diet. She went from being constipated, to going at least once every day. And we all know what happens when they don’t go. Just have faith, have hope and believe. Believe in your little girl, for she is your angel and you are blessed to have her. Best wishes to you and your family.

  5. says

    That last paragraph made me cry. How lucky you all are to have each other. Thank you for sharing everything with us. I’ve followed your blog for a long time and I don’t even follow the same eating patterns as you, or have a child on the autism spectrum, etc., but I just find you to be a loving, inspirational person who’s writing has found a special place in my heart. My own mom didn’t give me the best examples to follow and finding my own way in motherhood has involved finding moms out there in the world who I admire and aim to be more like, and you are definitely one of those moms. xo

  6. says

    Being a mother to a child with autism myself I can completely sympathize with your journey with Ashley. She looks like such a happy little girl and from what I see your doing everything you can to make her feel as healthy as possible. What those who do not have children with special needs don’t understand is that we blame ourselves enough and research evething that we can and do not need people constantly asking us if we will try this or that or maybe if you did this then, etc… I we are also paleo and found a big difference with our son. Love all your posts.

  7. Kristy says

    Beautifully written! Thanks for sharing that.

    As you learn to feed Ashley better, we all get to learn how to feed ourselves and our families better as well!

  8. says

    I just ran across this post and wanted to say that you are doing a great job. I’m a total stranger but it’s obvious from what you’ve written that you adore your little girl and do everything you can to make her happy. What a great mom! When that voice pops in to say you should try this or that, just remember that you are a mother who is fighting a hard battle for your special little girl and you deserve some kindness from yourself. By the way, my first thought when I opened this link was “wow, what a cute kid!” and then I noticed how much she looks like you in the photo next to hers. It sounds like Ashley is a sweet and lovely little girl and I’m glad to hear she’s feeling better. :)

  9. says

    Thank you so much for your article! I have the same MTHFR mutation as your daughter. Your article may help our family very much! I have horrible memory problems and mental confusion and can’t seem to find effective ways to detox. We get terrible, debilitating leg pains that make it hard to walk. I hope maybe grain free and the glutathione may be the answer we need. I’ll present this info to my ND. If you have any more tips or info, I’d love to learn more. PS. Your family is just lovely. Keep up the good work :)

  10. Nikki Crespo says

    Thank you for sharing so candidly and from the heart! I was in tears at the end about what your FIL said. I battle that “monster” all the time as well and both of my girls are fine. Ashley is so blessed to have you for her family. In many families she wouldn’t have been given the opportunities she’s had to heal her body as best as she can. One day, you will have to write a book about it :o)

  11. says

    Thirty two years ago I had a very special son and someone told me in those early days the same thing your Father In Law told you…to this day I hold that person so dear for knowing that long before I did, for loving me enough to understand before I even thought about it. Give your sweet girl a hug from a mom who has walked some of your steps and recalls those days of hugs and kiss, just sitting feeling so happy so overly blessed just because he was on my lap. Enjoy each day, thank the Lord for this amazing gift he has trusted you with.

  12. says

    Hello, Hello!!! I am so Stinking Excited to have come across your site tonight. I bounced over here from Pinterest and I am in LOVE with what I am seeing. Our oldest son has Aspbergers and just last year was diagnosed with Autoimmune Hepatitis. It has been quite the journey to say the least. We are GF and preparing to go on the GAPS diet. I blog mainly about DIY, Crafts and Sewing with a bit of GF thrown in the mix. I am so looking forward to following along with you and getting to know you through your blog.
    All the best to you and your family!
    xoxo
    Angelina

  13. says

    You amaze me, Kelly. Always. You will help so many with this post. I am so very glad that Ashley continues to make progress and that you continue to find such grace. She’s so beautiful and loving that I’m glad you’ve found so many answers to help her feel better and allow the love to come through. “Blame monster” … while I don’t think that most offering up suggestions had that in mind at all, it’s painful to consider that intent or that you would feel that way, but I can see why. Again, you are amazing. Such grace all the way around.

    Lots of love and kudos to you, my friend,
    Shirley

  14. Anonymous says

    Now that Ashley’s found her voice, she ain’t afraid to use it!! :)

    So when are you guys going to get around to crankin’ out that cookbook by the Spunkettes? A lot, and mean A LOT of people are dying to see a Paleo cookboook with recipes done BY kids and not just FOR kids.

  15. says

    Hi Kelly :) I loved reading this update, thank you. I can attest to Ashley’s laugh being completely amazing. Her eyes completely light up when she’s happy. As you said, pure love. Something that stuck out in your post was, “There is no one on this earth, other than my husband, with whom I would rather spend the rest of my life.” –> you are a brave woman, a loving woman, a strong mother and a caring soul. I carry your family in my mind often. You’re all an amazing bunch and I wish you the best, each one of you, everyday ;) So honored to call you a friend. <3

  16. says

    Thanks so much for posting this. My husband and I just found out we have MTHFR mutation and both of our kids are on the autism spectrum.

    I fight the blame monster a lot.

  17. Anonymous says

    I love reading your blog. I had no idea Ashley had been so permanently injured from the vaccine injuries. You’ve done a tremendous job doing all you and your family can to help her. We have MTHFR also, and one on the autism spectrum. Please wishes for your family, and Ashley is such a joy!

  18. says

    Thought u might be interested in this:

    Kerri Rivera, Dr kalcker and klinghardt are the pioneers in using this therapy to help people with autism and chronic health issues…. I’m still researching it, but maybe it might resonate with u? There is some mixed feelings on it, but for those it helped, it seems to work very well. I’m interested in trying it for my own chronic health issues

    http://www.amazon.com/gp/aw/d/0989289044/ref=redir_mdp_mobile?keywords=kerri%20rivera&qid=1390508774&ref_=sr_1_3&sr=8-3

    (newest version that just came out)

    http://www.amazon.com/gp/aw/d/0989289001?cache=1390588463&pi=AC_SX110_SY165_QL70#ref=mp_s_a_1_1&precache=1

    (first edition so u can read can read reviews and testimonials)

    Her website http://mmsautism.org

    http://www.michaelharrah.us/parasite-protocol

    (some more info)

    Also treats mold illness and gut issues, cfs, fms, lyme, dysbiosis, oxalate issues, and other autoimmune disorders

  19. says

    I never comment on blogs (I am a horrible person – I am usually on my ipad at 10pm and typing is tedious on the Ipad), but your FIL’s quote made me cry. Her purpose in life is achieved. We all need to learn to love better.

  20. says

    I’m sure by sharing your story you’re helping someone else. way to go. I met you and a portion of your family at Annie Bloom Books in Portland. I had a few sentence exchange with Ashley about a raccoon puppet she was playing with. I’m a SPED teacher so I just always try to include everyone around me. She was so pleasant and as me and my friend walked away she did say to us “have a nice day” with a huge smile on her face. thanks for the memories!

  21. Lauri says

    I have recently found your website in the effort to help myself begin to live a healthier life, and to overcome the effects that having MS has ravaged my body with. I sat down long enough to read about your precious daughter and I am overjoyed at the progress that has been made with her. I just want you to enjoy her every single second of every single day. Not every parent is lucky (blessed) enough to be given an angel to care for and nurture. You, my dear, are one of those so blessed! May the grace of God continue to shine upon you and know when your angel looks at you with those eyes of love you have that insight into heavens realms :-)

  22. Mindy says

    Hi Kelly, thanks so much for sharing your story! Although I do not have a child with autism, as a speech-language pathologist I work with children and their parents everyday that are touched by autism. I appreciate your honesty and strength! It is so important to educate yourself and others about how foods and toxins can impact us. I wish more parents had the ability and knowledge to try alternative/diet changes to help their children. As we know, every child is different, but doing nothing isn’t the answer! I work with children and their diets are awful and although our team try’s to guide them, it is difficult because everyone has their own opinion and beliefs. I guess that is why autism continues to be on the rise! Thanks again for sharing your beautiful daughter with us!

    • says

      Thanks for commenting Mindy! I was interviewed on The Paleo View podcast this week if you’re interested in listening :-) I talk about autism, diet and detox.

  23. Tara says

    Hi Kelly,

    I just started listening to you being interviewed on the Paleo View and found your blog. My little guy is a little bit younger than your Ashley, he turns 9 in June. He is on the spectrum but has made tremendous progress using diet, biomedical interventions, and specifically chelation. We started when he was five. I love what you FIL said. I do think that our children choose us as parents and they are on this planet to radiate love. We decided not to have any more children because I myself have had some health issues and the financial cost has been debilitating. I sometimes wish we had just gone for it, but now I am getting too old! I am so grateful for my little boy. He has taught me so much.

    Take care,
    Tara

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