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Monday, 16 October 2017

Facing Fear #autism #autismdiet

So some of you know my son is terrified of dogs… so what do I do? Get a dog…. I truly believed in all my heart the best way through a fear is head on… it’s been a slow process and a lot training for Bella (our pup) but, slowly Jax (9.5 months later) is watching us play catch in front yard (he sits on porch swing while I throw the ball for Bella-huge step), then today I had Bella lay down near porch swing and set timer for 2 min and Jax petted her on his own (still hesitated but smiled lots) and wait for it… drum roll and fireworks please 🎊🎈this kid went on his first walk w Bella (just down the street and back w me). I held his hand and leash in same hand and we did it!! He was skipping at one point as he was nervous but so proud of himself!! I can’t wait til they are best friends!! I know it will happen!! Go Jax! Go Bella!! #boyandhisdog #nevergiveup #hope #autism
PS huge note since getting Bella he doesn’t freak out when he sees other dogs walking by anymore (that used to be a huge problem!) #proudmommy

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Thursday, 28 September 2017

Our AHA President’s message: We should all stand together #autism #autismdiet

So I wrote on an advocate’s page that I may not always agree with, but respect. He posted a video on his point of view on a topic near and dear to his heart as he is on the spectrum. He asked those that didn’t agree with him to leave his page which made me sad as I hate to see our community divide.
I notice in our community that we are so divided by our beliefs… autistic vs child (or individual) with autism, world autism day, acceptance day, awareness day, appreciation day, Diet or No Diet, disease, disorder or disability… light it up blue or red or go dark, help the child or believe God made them perfect just the way they are… oh my goodness this is just some of the stuff we fight about..we don’t have to always agree on everything however, we should always respect one another..

It personally drives me bonkers to have our groups fight and not listen to one another. We have bigger fish to fry..

I think we need to stand together throughout all the subgroups. As I believe there are many…we can learn so much from each other.

Here is what I wrote on the thread that I thought was important to maybe have us all in the community think about…

We divide ourselves and then expect the general world not to do the same… that strategy is not working for us…

Here is my comment on the thread to the advocate on the spectrum that I respect as I said (I hope I don’t get unfriended: our kiddos in all subgroups need all the friends they can get):

I believe there are different subgroups of Autism. I think we need to be understanding of them all and respect them all. The Autism you speak of that you advocate for is one that is far different than other subgroups. It makes me sad we have to divide. Why can’t we respect all of the spectrum. No one should speak negative about anyone on the spectrum (remembering it’s called a spectrum for a reason). We shouldn’t be unfriending just because we are in different subgroups.. we should be open minded of one another and we should be rallying together to teach the world. Some of the spectrum are quite sick. Their immune systems aren’t the same as other subgroups. I wish we would stop acting like there is only one type of Autism. I respect your work however, I would love a world where the Autism community could stand together and understand all aspects. I wish they had different categories on the Autism spectrum as all are not created equal with the one label. There are subgroups that don’t have a voice, get violent, aren’t potty trained, can’t hold a job, have no resources and so on. Their future with out their parents being their advocate to help them have the best life and hopefully be able to live on their own when the parents are no longer here is a bleak one if we don’t stand up for them too. Many have food allergies, gastro problems, seizures and so on… it’s not just a few in the community it’s thousands and thousands experiencing this with Autism which tells me this group is sick and maybe once they can help their immune issues then maybe they can join the healthy subgroup of Autism. My son’s mind is brilliant in so many ways however, he gets held back by being so sick with many other labels that as I said thousands have in a subgroup of Autism. Let’s stop fighting each other. Let’s be respectful on all sides and show compassion. It hurts the subgroup that have very sick children when the advocates that are doing so well in the healthy group dismiss how they are feeling and what they deal with. I think there should be nothing but love and support from all sides. The general world is hard enough to fight.. let’s not fight w each other. Let’s stand together and educate that there is not a one size fits all label…

Wishing you the best and know even though my son is not in the subgroup you advocate for I am still advocating for your group too!!

Peace and love… 💕

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Friday, 8 September 2017

Squeeze My Ear #autism #autismdiet

So I found this super interesting… we are having some work done in the yard this morning and Jax often covers his ears at random times (he doesn’t like ear cancelling headphones either) and today he asked me to squeeze this part and a little further in of his ear. He sat there smiling listening to the drills outside as long as I was squeezing his ear then he didn’t cover them… he told me what to do to help him… so I started wondering if maybe I could find a clip on earring w out the earring and see if maybe that might help him at times he wants to cover his ears. He never has liked earplugs either which makes sense if squeezing his ear is what helps. Anyone else ever experience this to help their kiddos? I love even w limited language this kid is starting to learn to tell me stuff so he can gain more coping skills! Our kiddos are in there we just can’t give up!! #autism#nevergiveup #hope #copingskills

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Tuesday, 15 August 2017

Beach Lovers! #autism #autismdiet

Trust is often an issue w those w Autism. One thing I do is say, “I promise” and only say it when I mean it. Today was a long day at work and yet Jax knew when I got home that we would take a walk on the beach. We did and used a flashlight. He loves the moon and stars and calmness of the night. Coming home to this smile is the best feeling! I am the luckiest mom to have a son who loves the beach as much as I do. It was pretty dark and yet we saw others also taking a stroll. #summernights #beachlovers#lovethiskiddo #autism #nevergiveup 🌚🔦🌊

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Monday, 3 July 2017

Dear Autism… #autism #autismdiet

Dear Autism,

Today you are winning… but I won’t give up. I know my son is in there. I truly hate yeast and Clostridia. The tears today are more than I can handle and I put it up to God. It just seems so unfair. Autism doesn’t care if you did all you could right in your life… no one should have to watch their children go through this. If you write to me today to tell me Autism is beautiful (I assure you today is not the day to talk to me then). You can come and hear my son so upset and then tell me it’s so beautiful.

I pray the meds that are supposed to kill the bad bacteria work.

I will wipe my tears and keep going…

The bad guys (in this case bacteria) won’t win.
White hats always win in the end! I keep telling myself that.

Love,
A determined mother #autism #hope #nevergiveup #frontlines

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Friday, 23 June 2017

Shake Up That Etch A Sketch #autism #autismdiet

So there are days like today that I just wish for normal. Whatever normal is. Autism can be so challenging and I have to keep reminding myself to shake up my etch a sketch and re draw a new picture of what perfect is. Some of us in the community won’t ever get the graduations, school dances, soccer games, driver’s license, first dates and so on… When I was a little girl I used to dream of getting to be the mom that cut up orange slices for my kids sporting practices, I looked forward to complaining about car pool, and having the crazy waffle weekend breakfast’s as I yelled at my kids to pick up their shoes they left laying on the ground… That is not my reality these days and I have to continue to be excited on all of our victories and accomplishments… Like his first words again after losing all of his speech at 15 months of age, the first time he looked at me again, his laughter after holding him for years and years in my arms as he screamed. I have so many dreams for Jaxson still. I will never stop dreaming and reaching for all the stars for him. I have to redefine what normal is for me today. Normal changes daily too… Today’s normal won’t be tomorrow’s. Learning to appreciate and be grateful for every wonderful moment we get when Jax is doing well and feeling well….. So I am shaking up my etch a sketch and re drawing what today’s normal and perfect is…. #autism #hope #nevergiveup

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