Autism Awareness Month - Day 18 Resources

I have so many resources related to issues involved with Autism. I wanted to share a few with you on this post, more will be coming later.

ONLINE SUPPORT:

Recovering Kids Biomedical Group

Warrior Moms and Dads

Christian Special Needs Homeschoolers

TREATMENT:

Sally Lloyd Homeopathy

Homeopathy Support

BOOK:

Homeopathic Self Care

Autism Awareness Month - Day 14 Our Story - Final Installment

If you are just now joining us, please take a minute to catch up on our story thus far before heading into our final installment.

Part 1
Part 2
Part 3
Part 4
Part 5

Photo Credit

We left our last installment with a big question: NOW WHAT?

The first thing I did was play with my son. He was so young, structured learning would come later. I took him for walks, Daddy took him for long walks, and we just really got into nature and our world.

I also was in super research mode. I wanted to find good learning techniques for a child on the spectrum. But, during this research, I came upon people who talked about healing and Autism. Many weren't saying cured, just feeling better and getting skills back. This interested me so I ventured down that path. Again, I was taught news terms like biomedical, DAN (Defeat Autism Now), supplements, and more. This sounded too good to be true and I figured my husband would think I went off the deep end, but I figured I would present it to him.

Not only did he not think I had gone batty, he was fully on board before I was even convinced. He said it made sense to him. I found a group that had local Moms with kids on the spectrum and began to ask who we should see. One name kept coming over and over, so we chose him and made an appointment.

This M.D. spend a great deal of time with us asking so many questions. I walked out of that first appointment mentally exhausted. He didn't care about the labels as much as he cared about the symptoms. I liken it to a broken bone. If I tell you I have a broken bone, you know very little. You have no clue what bone is broken, how severe the break is, how long ago it happened, how much pain I am in currently, etc. You need to know more. We walked out with a few tests we needed to do (urine collection) and he drew a bunch of blood from our son.

We also walked out with one prescription. He said he normally waits for labs to all come back because he needs to see what's going on inside the body, but our son's symptoms screamed a need for B12. He prescribed MB12 injections to be given twice a week. We went home, waited for the script to come to our mailbox (we sent off to a pharmacy for them) and I got brave and gave him his first one. We waited for the labs to come back (took 2 weeks for some and 4 for others). During that time I kept giving him his shot.

10 days after starting his shots he was 24 hours past his 3rd shot and he and I were in the living room puttering around. He was at the sofa and I was sitting in the chair across the room. Out of nowhere I heard a voice. It was my little dude. He looked in my general direction and said, "Can we take a picture of that". It's like time stood still.

Did he just speak?

Did he really just speak a complete sentence?

Am I asleep and dreaming this?

If so, can I please not wake up?

It finally hit me that my son had just spoken, but I still wasn't sold. I asked, "what did you say?"

He said, very slowly, like I was an idiot that didn't understand the English language, "Can ... we ... take ...  a ... picture ... of ... that". He then looked across the room at an object (can't remember what it was) sitting on the end table.

I about hit the floor. My baby boy had just spoken. Not only did he speak, he spoke a full sentence and it made sense. I couldn't get to my phone fast enough to text my husband (yes, we used pagers back then). I needed him to call me immediately. I needed someone to share this with. He called me back and I think I screamed into the phone what just happened. He was shocked figuring I had just kind of misunderstood. I told him wait until he gets home.

He got home and my son turned and said, "Dadddyyy" when he walked in. That was it. He believed me. We told no one what we were doing. But through that week we would see various people in our lives and our son spoke in front of them. I remember my Mom looking at him and back at me many times and her say, "what did you do? what did you do?" Ha ha. We told her what our doctor had done. It was amazing.

We have been using biomedical interventions for over 6 years now. We have changed doctors a few times as our needs changed or our need for a more skilled doctor changed. But, one thing hasn't changed and that's our son's improvement. He's slowly but surely feeling better. We have lost almost all constipation, his eating is starting to improve, his eye contact is nearly normal, he engages at will and purposefully, he's reading and writing, he loves to draw (and is very talented in that area), and he feels a lot better. We have a long way to go but he has come further than I ever imagined that day when we lost him.

Through all of this I have learned a few things.

• This is the hardest thing I have ever gone through. There are no words that can explain what it's like to have a child who is not healthy. We were blessed with two children, but we also have two kids with medical issues and special needs. The term roller coaster is nothing compared to what we have ridden. 
• This has taught me more than anything else I have ever gone through. I had to reach down to levels of myself I never knew existed. I had to learn about strengths I never knew I had and weakness I wish I could have kept hidden.
• When so many marriages break apart with even one child with special needs, ours has grown stronger. Oh, believe me, that wasn't easy. There were lots of short tempers, gripe fests, and tense times. But we came out on this side of it better for it.
• I have learned more about God than I did the first 30 some odd years of my life. I have deepened my faith and passion for God because, honestly, there were times (days, weeks, months!) where His strength and His mercy were ALL the kept me going because all of my ability had been used up. The Bible verse that states, "I can do all things through Christ which strengtheneth me." (Philippians 4:13) is not just a pretty saying to put on a wall hanging. It holds so true and is never felt more deeply than when you have NOTHING left to give. 

I hope you have enjoyed this short series on how we came into this world and are now living in this world we call Autism. It was a ride I never wanted a ticket for, but one that has proven to mold us and shape us into the people we are today. I wouldn't wish it on anyone, but am glad to know I have fellow Autism parents who understand. I hope I can be that to at least one person during my life. 

Finally Someone Saw It

Our older son's legs have turned in for a long time. Actually, let me correct that. Since he regressed his left leg slowly began to turn inward. His right leg was fine. He can now turn his left foot completely towards the back with no trouble and no pain. Recently his right leg began an inward turn. I have asked countless doctors about it. I have talked to specialists. Everyone sees it, no one knows what it is. Muscle guys say bone, bone guys say muscle. One doctor blew us off completely and said, "it's just Autism". We were given expensive custom inserts, had muscles taped by therapists, and more. Sigh.

Finally our ortho doctor did thorough testing (the first one to do so) and found out, without a doubt, it's not bone related. He said it was muscular/neuromuscular. I went to the top neuromuscular doctors (supposedly) and she is the one who told us, "it's just Autism".

I had all but given up. He has pain related to this, he trips on his own foot, it makes him clumsy, and no one seemed to care enough to help.

I decided to throw in the towel after one last call for help. I emailed our DAN doctor about the issue. hoping he could refer me to someone. He didn't refer me. He told us to bring our son in to see him. We did.

He poked.

He mashed.

He bent.

He twisted.

He looked.

He felt.

He sighed and said there was nothing biomechanically wrong with our son (meaning nothing a chiropractor could help), there was nothing wrong with his bones (we had hear that from a pretty reliable source). He said this was organic and it was definitely in his muscles. It was all tied to his issues we knew about (mito, deficiencies, etc). This means we were some what helping with the protocol we were on, but not nearly enough to help because those items could never correct the damage. They could only support and heal the CAUSE.

Our son has loose muscles on one side of his body, very tight muscles on the other, and it's twisting and tilting his pelvis.

He decided to work with PNF (Propioceptive Neuromuscular Facilitation). Normally he does this in-office but we live quite far from him so regular multiple visits each week would be impossible. Instead, he's teaching us the exercises, giving us a rigorous schedule, and will see us every 3 weeks to monitor our son's progress. He said words I never hear him say. He told me he thought we could reverse this. It won't be fast or easy. We have a lot of work ahead of us to help him stabilize, move things like they should be, and then make them symmetrical in usage. We are working a few hours a week to try and overcome what the body has been doing for years and will be doing 24/7 as we do the exercises.

I appreciate that we have a doctor who finally really looked at our child, saw his issues, and helped set up a plan to remedy the situation.

My take away? Never give up!

Getting Real

When we read people's stories online, they are heavily edited, carefully chosen pictures that they want to share. We rarely see the day they eat cookie dough on the sofa while not getting out of their pajamas. We see adorable little children lined up in a row, doing their school work with no whining, while their tousled hair (that took 30 minutes to get that bed head thrown up in a quick bun look) looks adorable as they mix up homemade cookies.

Yeah, so not me! Let me describe my day.

I wake up at 3:00am to kind of nudge my husband to make sure he's awake to get ready for work. I wake up at 3:09am and repeat. I wake up at 3:15am and repeat. I am often then awake while he's still groggy in bed thinking about getting up. It's a good thing he's so cute and I love him so much.

• I get up after laying there staring at the ceiling and traipse into the living room. I grab my pillow as I leave my bedroom and lay on the sofa. I put a DVD in that I don't care if the kids see in case I fall asleep and they walk in on the end of it. This means something like Leave it to Beaver or The Andy Griffith Show or the like. 

• I watch it a while and go back to sleep on the sofa after convincing our cat that he doesn't want to play with me. 

• 5am or so comes and I am awake for good. No, I am not just an awesome, well scheduled, and put-together Mom. Nope, for some ridiculous reason I am a morning person. No matter what I am up early. I don't want to be. I am not singing with the morning birds happy. I am simply awake. 
• 7am or so and my youngest is up. He comes into the living room, sits next to me, leans on me, sighs, and then says, "canIwatchamovieIamhungrycanyoufeedme". It happens every morning without fail. 
• I slowly get up, grab him some cereal or toast with "chocolate milk" (formula mixed with almond milk because he doesn't eat well) and sit back down with him letting him eat on our card table or desk which is in the living room while he watches his kids DVD. I give him his morning supplements his doctor wants him to have, and hand him pear juice to drink with it.
• I hang out and wait for our older son to wake up. Since he was up until midnight due to his sleep issues tied to his Autism, he won't get up until about 9 - 9:30am.
• He wakes up, I kiss his sweet sleepy head (because he has the biggest bed head I have ever seen with hair going everywhere and a sleepy smile every single morning), and snuggle with him a bit. 
• He doesn't ask to eat. He never asks to eat. If I didn't make him eat I think he wouldn't eat all day. So, I tell him it's time to eat and give him his breakfast choices. He likes cereal, toast, or eggs most mornings. 
• I let him sit at the card table as well because brother did and, well, you know how that is. 
• We finally finish with his breakfast between 9:30 - 10am.
• I mix his supplements (those that can be mixed) and get them in syringes. I put them into his g port of his GJ tube and change his tubie pad. 
• In this time I have grabbed something with caffeine and added in my Before the Flow or After the Flow (depending on the time of month), my zinc, and take my allergy pill after forcing myself to eat a little something. I am not a breakfast person and could skip it everyday. But, since it's important, I take my allergy meds in the morning knowing it will force me to eat or else I will be nauseated. 
• I get dressed, the boys get dressed if we get dressed that day. I almost always do. I feel more productive with clothes on vs. pajamas, don't know why. We then do our typical personal care such as brushing our teeth and hair. I don't put on make up. True confession, I very, very rarely wear make up. I don't like the feeling of it and yes, I have tried it all. It's a sensory thing and my husband loves me bare faced, so it's a win-win. I also rarely do much with my hair. I brush it, put it in a pony tail about 40% of the time, and that's it. I am a very low maintenance person. 
• The boys play, run around, and have fun in between all of these activities.
• Yeah, well, it's now 11:00am and it's time to contemplate lunch. 
• I normally make a quick lunch. It might be left overs from supper the night before, a sandwich, hot dog, pasta, etc. 
• I make their lunch supplements and hand my younger son his (he swallows his) and mix them up for my older son to put in his g-tube.
• Depending on how well our older son has eaten for the day, I start his continuous feed now and it will last him the rest of the day and into the night. If he's done awesome (which is rare) I wait until supper to start it.
• The boys clean up their places and it's time for quiet time. 
• I tell the boys this is a good thing for their bodies to rest for an hour. They don't have to sleep, just participate in a quiet activity. Mommy really just wants to have a bit of down time. 
• After quiet time we have a snack and start school. I used to do school in the morning but the kids have told me they hate doing it that early and prefer the afternoon. I am fine with that since I do better in the afternoon, too. I have noticed a big difference in their attitudes towards school work and their attention when we work in the afternoon. 
• School ends and we do some chores. The kids pick up anything in the livingroom that is theirs, clean up their rooms (if I remember to ask them - just keeping it real), feed their pets, and then do other chores depending on what needs to be done. 
• It's soon time to think about supper. I make supper, we eat without my husband 4 out of the 7 nights in a week due to his work schedule. I, again, hand supplements to our younger son and mix them for our older son to go in his g-tube. 
• If our son did great earlier with his oral intake, I start his continuous feed now. 
• Both kids run off to play for a while. 
• Every other night the boys get showers/baths (depending on which one they want). 
• We have prayer time, often talk about the day, and sometimes read a book or just snuggle for a while. 
• I kiss the boys, give them big hugs, tell them how much they are loved, and send them to bed. 
• 10 minutes later one of them is out wanting something (water, another hug, to tell me a life altering issue that just came to them once the lights went out, etc). I listen/hug/get them water and send them back to bed. 
• Younger son stays in his bed until he's asleep. He often reads a book until he goes to sleep. 
• Older son stims. He stims for the next 3 - 4 hours until he falls asleep around midnight. 
• I sit on the sofa, chat with hubby, maybe pop in a DVD, go over what needs to be done the next day, and settle in for a long night as I can't go to bed until our older son is asleep because he roams. He never leaves the home, he just roams in our home. I need to be up to help him with whatever he needs. There is always a need in his mind. It's never aimless. 
• I head to bed once the quiet happens in his room. 

Days are busy. I am OK with that. Sure, I would love quiet days where we did nothing but read books, take long walks in the woods, and play board games. It just really doesn't happen. It's our normal. 

No, I am not a saint. There are days that I stand at the counter in the kitchen wondering if it would be horrible if I just skipped one day's worth of supplements for them so I didn't have to bother with it. I don't, but it is tiring. There are days I dream of hubby bringing home a large pizza with extra pepperoni and double cheese. I make a gluten free spaghetti instead, but I dream. There are days I pretend I am sleeping when hubby is home hoping the boys will go to his side of the bed. They don't, but I try. There are days when it is lunch time and it hits me that I am still in my jammies. I change clothes, but it sure did feel good. We all have weaknesses. I don't do these things with some halo on. I don't want to wash dishes most days (and some days I don't). I don't want to do laundry, or make another pitcher of formula, or anything else medical. 

This is not who I ever planned to be. I am a techie. Computers and technology have known issues with known causes and you fix them in known or not so known ways. You have a beginning and an end to an issue with any system. You can walk away from the office at the end of the day and know you did a good job and it won't be there tomorrow. I was a manager and loved working with people helping them succeed at their jobs. I was well liked by my employees and my CFO and COO gave me lots of praise and kudos. I got raises and more responsibilities, even responsibilities far above my pay grade. 

But you know, the perks of this job are so much better. When my younger son smiles and tells me we have the best talks, I don't miss that job. When my older son smiles at me at all, I don't miss those raises. When my sons tell me I am the best teacher in the world, those responsibilities I held so dear mean nothing. It's hard. It's tiring. It's mentally exhausting. But it's the best job I have ever had. And THAT is getting real. 

When Life Gets Hard

"I feel like I am hitting my head against a brick wall". I have heard it many times. I have said it many times. In the Autism journey you can feel like you have not only hit your head into that proverbial wall, but like you have been knocked out more than once.

My advice to you is stop. Stop banging your head for just one minute.

Pull your head away from the wall.

Open your eyes.

Look to your left. Look to your right.

Every wall has a door. Find that door and open it. There's no reason to continue hitting your head when you can turn a door knob and leave that entire room.

We have done this many times. It wasn't until I stopped banging that I found the door to open. It wasn't until I stopped the senseless acts that were causing me so much frustration that I could find the door. It wasn't until I gave it to God through prayer that He gave me enough to strength to stand up and find an exit.

I spoke to my husband who knew someone who was just banging away and banging hard. I told him to tell them this advice. Just stop the ramming and start looking for that door. It's there, find it and see what's on the other side.

Sleep - It's a Good Thing

From here

Sleep, it's a huge issue in our home. Kids don't get it so neither do the parents. I remember hearing parents gripe about a kid not sleeping well. You hear stories of "one more glass of water", "a few more pages, Daddy" and the like and you smile. You laugh inside knowing it's a part of growing up.

Yeah, that's not what I mean at all.

Picture a child so anxious about night time that he will beg, plead, and beg more to not sleep alone. Imagine a child so revved up that he runs for hours in his room until he finally slows down at 1am, napping for an hour or two (and I do mean light sleep), waking up, stimming some more, going back to sleep lightly for two hours, and continuing like this until one time he wakes up, sees sunlight outside, and is out of his room at 6am.

I mean sleep issues!

There are ways to help these issues. The problem is, many people want a one size fits all approach. I honestly have people ask me all the time, "what are you using for him and tell me the exact dose".

Here's the issue with that. 1) How big is your child compared to mine? If mine is 65lbs and your child is 32, that's a huge difference in weight and what my child can take might harm your child. 2) What are your child's reasons for not sleeping? What is causing my child to stay awake might not be what causes your child not to sleep. Did you know the reason my older son doesn't sleep is very different than why our younger son doesn't sleep? Same result, different mechanisms in the body.

Instead, I tell the person to call our doctor, or give them the names of other similar doctors who can help them figure out what's going on in their little one's body.

Having said that, this post is to also share our newest possible success in the sleep realm. Our younger son has a lot of anxiety tied to bedtime. Who am I kidding? He has a lot of anxiety tied to life in general. Our doctor has figured out a lot of the reasons why and we are starting new protocols slowly. We have only started two items and one is something we have used before but his body is deficient so he's on it again. When we start supplements, I always start one at a time. This let's me know what's working, what he might react to, and what he might be having an odd side effect with so I can tell the doctor.

Here's what we have so far:

• Massage - At least once a day, moving up to twice a day, I massage our son's back, calves, and feet. I use Ava Anderson's Dream Cream with two drops of Lavender essential oil mixed in. He loves it. He has always loved massages. If I only do it once during the day, I make sure that one time is after supper. If I do it twice (which we are moving to) then I do it in the morning after breakfast but before school and then before bedtime. I take my time and allow his muscles the time they need to really relax. I start on the shoulder area of the back so he will start to breath in the oils and that will help relax. 
• L-Glutamine - Our doctor has us giving him 2,500 mg of L-Glutamine from Klaire Labs even evening before bed. I give it to him after his massage and just before he brushes his teeth. We use the powered form and put it in some pear juice (just enough for the powder to fully dissolve as there is no taste to the supplement). 

We have other items we will be adding, but this is where we are since meeting with our doctor. Here is what we have seen so far:

• A child who is calmer and more able to move through stressful situations. 
• Monday - it took our son 2 1/2 hours to fall asleep with quite a bit of anxiety and being in his room. 
• Tuesday - it took our son 1 hour 16 minutes to fall asleep in his room with my aid and medium levels of anxiety (reading stories, singing a lot of gospel songs, praying with him, etc).
• Wednesday - it took him 40 minutes to fall asleep in our room with no anxiety. 
• Thursday - he woke up and came to me asking if tonight he could sleep in his own room with me helping him a bit with a story and song. He said he thinks he's ready to move in there now. 

Why this is big: He has always had so much anxiety with sleep that even suggesting he sleep in his room would throw him into a massive panic that was honestly fear based. For him to come to us and ask to sleep in his own room is a huge, huge step. He also takes a very long time to fall asleep, even if we lay down with him. The fastest way to get him to sleep is for us to be in there, but even that is a long journey. For him to fall asleep in 40 minutes, that's a big deal. 

Our son, who has had sleep issues since he was a week old, is starting to sleep. I pray this is his answer. God lead us to an awesome doctor who is, what I would classify as brilliant. He saw our two kids issues and knew how to help. He said what we were doing for our younger son would happen quickly and I was afraid to have hope. I am starting to let go of that fear and see the hope that is out there. 

If you are a parent and feel like giving up, or have given up, don't. There is hope. It might not happen overnight. We have been trying for sleep for 7 1/2 years. But it can happen. Pray hard, seek His face, and look for doctors who will listen and know what to do once they understand your child's issues. 

If you need a place to start in finding doctors, let me suggest the two websites below. You can find one closer to you. You might have to drive a bit, but ask about phone and Skype appointments. Many will do that for those who aren't local.

Defeat Autism Now - don't let the name fool you. They are biomed doctors and can help much, much more than Autism. 

MAPS - the newer and very up-to-date people out there. 

Stand strong, parents. You can win this war. 

*Most of the links in this post are not affiliate links. The only one that I am affiliated with is the link to Ava Anderson. I receive nothing if you click the link, only if you make a purchase. You will not pay more for the item, but I do receive commission on anything purchased. 

Catching Up

Sorry I was gone a few days. Being Thanksgiving week, having a nasty storm, and crazy doctor appointments, and it made for me missing being here.

We traveled to my Mom's for the holidays and came home the Friday after Turkey Day in order to have a day of rest before going to my in-laws on Sunday to celebrate with them. We got a call Saturday morning that, due to the rain, the road to my sister-in-law's was flooded and there was no way we could get in and the day was canceled. Sigh.

Sunday evening we packed up and went to my Mom's again because she's very close to our sons biomedical doctor. It takes us 2 hours to get to her home and, since our appointment was at 9:30am the next day, we didn't want to get up before sunrise, drive to her home, drop off the kids, and then head to the doctor's office in time to make the appointment.

From here

The day of our appointment came and I was excited. I love our doctor. He's so kind, warm, and smart, smart, smart. I mean, he makes smart people look mildly intelligent. I went in with my notebook of test results (I always take them with me so I can refer to them as he speaks and make notes on them), a spiral, and a few pens (you never know if one might die and I take a lot of notes when he's chatting). We sat down for what would be a 2 1/2 hour long chat. I didn't realize he had blocked off so much time for us.

The Good:

• We have a whole new protocol.
• He saw our sons issues very clearly.
• He knew what to do about them. 
• He thinks he knows why our younger son won't sleep alone at night due to night time anxiety.
• He thinks he has identified our younger son's eating issue.
• He saw where our other doctor lacked in testing in order to get a full picture on our older son. 
• He saw where other doctors had made mistakes in what they thought the issues were in a few areas and got us on the right path. 

The Bad:

• Melatonin is now in the trash. A major sleep issue we were having was being caused by a side effect of Melatonin. We caused what we were fighting. I mean, we didn't know, we were told to use it, but it was not a good thing for our younger son. 
• The frustration level we had at being misdirected for so long by other doctors was high. But we let that go because it does no good to anyone. 
• We have a blood test that needs to happen for our younger son. Oh, gee, how I look forward to that... (read sarcasm)
• I have stool sample to collect from our older son, the kid who never poops. Still waiting. 
• SLEEP! We have none. Since pulling the Melatonin the kids aren't sleeping. We have something new on board, but it will take up to two weeks to see results. So I am working each night to get our younger son to sleep and just waiting out our older son. This means I am up very late (1am or so) and then getting up early because my younger son gets up early. Come on 14 days!!!

And now I am back. I am not sure how much mental clarity I have, so if my posts make no sense, just keep reading, shake your head in pity for me, and know in 14 days it will hopefully go back to normal. 

Talk soon

How I Got Started on This Path - Part 5 (The Final Steps of the Journey)

From here

This is a multi part series. If you would like to start from the beginning, follow these links: Part 1, Part 2, Part 3, Part 4

When we first got our older son's diagnosis of Autism I became a researching fool. I was on the internet, reading books, going over journal publications, and more. I was told PPCD and that was it and knew there HAD to be something else I could do to help our son. I came across parent after parent speaking about something called a DAN doctor and biomedical approaches to helping our kids feel better. I told my husband about it and, while he wasn't sure this was a legit thing, he suggested we go ahead and at least check it out.

I made an appointment with our first DAN doctor and showed up. I was so unprepared. I am used to 10 minutes with a doctor, go home with a pill, see you later. Yeah ... no. I arrived to see a sensory waiting room, a huge fish tank, and an appointment that lasted for 1 1/2 hours. I didn't wait for 1 1/2 hours. The doctor and I talked and went over plans for that period of time. He wanted to do a bunch of labs, not just throw pills at us. What he said made sense. The only thing he sent us away with was MB12 injections. He wrote us a script saying that we needed to wait for all the labs to come back, but our son's symptoms were screaming a B12 issue, so he wanted to get him started on those immediately.

A week later our prescription arrived (it had to be compounded). I sat with my son a long time trying to talk myself into giving him these shots. It wasn't that I doubted the need. It was my own personal freak out about the needles. I bribed him with a treat and we did our first shot. He wasn't too happy but it wasn't horrible, especially once he figured out he got the treat the second it was over. We kept our new treatment to ourselves because I was afraid I would see something out of desire to heal my son and I wanted all those unbiased eyes of friends and family to be my testing ground.

1 1/2 weeks later my being sold on the more natural way of doing things happened. My non-verbal son, my son who went from speech to baby babbling in a day's time, spoke. I will never, ever forget that day. I was sitting in a chair on one side of the room and my son was standing next to the sofa on the other side of the room. It was just a quiet afternoon when he stopped his little playing and said to me, "can we take a picture of that". It was like the world stood still. I sat there, for what seemed like forever, trying to comprehend what just happened. I said, "what did you say?" He looked at me like I had the comprehension problem and said, very slowly like you might speak to someone that didn't understand your native tongue, "can we take a picture of that". I about hit the floor. I wanted to scream from the rooftop. Instead I called my husband and told him what happened. Honestly, I think he thought I had been drinking and hallucinating. But, he got home that night and couldn't deny what was happening in front of his own eyes.

As we got him around friends and family I wondered if they would notice.

They noticed. Oh, they noticed in a big way. I kept hearing, "what happened", "what did you guys do", "how in the world...". They noticed. My Mom was sold on MB12 and joked we should give that everyday. This was huge for him and it was what his body needed. Our DAN was shocked when we returned for lab results. He had a non-verbal patient who was now verbal in a matter of less than 2 weeks. But he wasn't totally undone because this was his job and he sees healing in kids weekly.

From that point on we were sold. Supplements became a part of our lives. Diet change became the norm. Research into toxins, environmental issues, things we use in our home, and more became typical weekend activities. We discovered our dishes were a bad idea for our sons. They had the same toxins in them that we were trying hard to get rid of in their bodies, they went. Cookware that we had used for a long time was tossed because it was not safe for our kids, or ourselves. Foods that we never would have dreamed harmful were no longer on the shopping list because our kids had clear reactions that we didn't realize were reactions. (Ever heard of a child screaming for hours after eating an apple? Yeah, I have watched it with my own eyes.) The list goes on.

Is our home 100% toxin free? No. That's impossible. We live in a world with toxins everywhere. I just discovered that the very air we breath in our county has one of the substances that our younger son is intolerant of in it. Can't get rid of air. So, we help clean the air in our home. We make their world as safe as possible so when the attacks come, their bodies are stronger and not over burdened in order to fight it off. We have changed things as simple as shampoos, soaps, cleaners. We have changed OTC pain meds, snacks, and even consumables that I use in the kitchen. We are a work in progress. We refuse to stop our kids from having a fun time as children. So we don't freak as much about toys and outside items. But we do make them safer as we can. As I posted a few weeks ago, we removed some of the toxins from our son's tube feeding system once we discovered all that was in the bags his formula was held in each feeding time. These are simple changes that, while not making much of an impact on how we live our lives, make a huge impact on how their bodies function.

Look, I don't know if we can cure what ails our sons. They have a lot of health issues. But, would you rather have a sick child with a healthier body or a sick child with a sick body? That's all this comes down to for us. If they are going to have issues in this world, let's make them as healthy as we can in order to be able to be strong and fight against what is going on with them. We arm them spiritually to put on the full armor of God. We arm them with education so they can make sound choices and have successful lives in whatever God calls them to as adults. We are arming their bodies so they can be as healthy as possible. It's really that simple.

Talk soon.

Autism Resource - TACA

I went to my very first TACA meeting last night. What is TACA? It stands for Talk About Curing Autism.

From here

Now, before I get hate messages, let me get one thing very straight. If you have a child that has Autism or are someone living with Autism and want to live with it, don't want any change, and think you are fine, awesome. You go for it. That's your right and your choice.

I would ask you to respect our right and choice to see that our children are not healthy, have horrible gut issues, health issues, and more and need a cure for, at minimum, those items related to Autism. So, yes, I am seeking a cure. As I tell our son, I only want to get rid of the harmful and bad effects of Autism, not the way he thinks or feels.

So, after my weekend of learning there was a coffee and chat time to go over our take away thoughts from the conference. I got to meet a bunch of Moms who have kids on the spectrum. We are all on very different parts of our journey in this puzzle of hope. But we share a common bond, and that is love for our kids and a desire for them to be healthier. I learned a few things that I didn't know before, laughed and talked a lot, checked out a great book that I can't wait to dive into, and was hooked up with a lot of resources.

I will be attending regularly.

If you want to see if there is a meeting in your area, check out their website. Meetings are free, support is awesome, resources abound.

Go to TACA or click on the graphic below

From here

Talk soon!

How I Got Started on This Path - Part 4

From here

This is a continuation of our story being told in multiple parts. To start at the beginning, or to catch up on a part you missed, check out these links: Part 1, Part 2, Part 3.

When we got the testing back we learned something very new. We learned that Autism is not just not looking at us, not speaking properly, and stimming. It's so much more, so much of a whole body experience for these kids. In short, our kids were sick inside. Gut issues were horrendous, yeast was flaring, immune systems were not doing their jobs, the list goes on.

So, we piddled around with biomedical approaches, never being truly serious about it. And, we had sick kids. Oh, the world saw Autism and never cared that we weren't giving supplements or such, but we knew the truth and were just too tired, to worn, to frazzled to keep up with the stringent protocols.

Then our older son started to take a turn for the worse. Let me stop here and ask you a question. Did you know that if a child has Autism he or she can have a whole host of issues that have absolutely nothing to do with Autism but affect him just as much? Yeah, it's logical to us but there are many, many doctors who have no clue. They see Autism and then try to make every issue your child has fit within that world. It's like trying to fit a broken leg under the umbrella of a child's diagnosis of brain cancer. A child with cancer can simply break their leg and need completely different and totally unrelated treatment for that leg. Doctors need to remember that.

Our son used to love going to our local park with my husband. There was a nice lake there with a hiking trail around it. About half way around the lake, if you were willing to climb down a bit and go off trail, you would find a hidden little cave. They spent so much time in that little cave playing and talking. The entire trip, if you never went off trail, was a bit over a mile long. But, with what my husband and son did, it was probably closer to 1 1/2 - 2 miles total. They went off trail a lot to explore whatever suited their fancy. My son would come home with energy to spare.

Slowly we noticed he wasn't handling these walks as well. His energy levels seemed to be decreasing in big ways. He also, during this time, started to slow down on his eating. He was limiting his variety of food and restricting his intake. It seemed as if he honestly didn't even feel hungry most of the time.

It took us years to figure any of this out. We still don't have a full understanding of what is going on with him. But, we are getting closer each day. After our son had pretty much fallen off the growth chart, our GI said it was time for a feeding tube. He just wasn't able to sustain himself with his oral intake. So, a year ago today (wow, it just hit me, today is our tubiversary), we had a G-Tube placed for our son. It was the scariest thing I ever did for him, and it's been the best choice we ever made for him in traditional medical care.

He also started to have what we call "crashes". He just has no energy at all. His whole demeanor changes. It can take something as big as walking a few aisles in a store to cause one or something as small as having a tube feed. Everything makes him tired. Naps or a good night sleep don't take it away. Because of this we are the owners of two new things.

1) We now possess a handicap placard for our cars. That was shocking to see come in the mail after our doctor sent off the forms to the state. I wasn't really prepared for that and what it implied about our family.

2) We now own a wheelchair. Our son loves it. I think he likes that there is no more pressure for his body to do more than it can anymore. He does what he can, the chair does the rest. I hated our visit with the DME and therapist to order it after our doctor prescribed it, but the second we saw it and saw our son's face as he sat in it, I see it for the blessing that it is.

I am going to stop here. I will finish up with part 5 and end our story telling you how we tied all this into moving to a more toxin free life. You needed to know our history to understand our present.

Talk soon.

Home Again, Home Again, Jiggedy Jig

I am back. No, I didn't just get back. I was done Sunday but I was worn out mentally, then needed to just spend a lot of time with my family as the kids didn't like Mom being gone so much and poor hubby had a whole new view on my day-to-day doings while he's gone at work. 

However, I have to say it was 100% worth it. This was an incredible weekend of learning, understanding, and big changes in our kids lives. I have so much to share, far too much to share in one post. But, information I learned this weekend will leak into my posts as the subject warrants. I won't keep it to myself, no worries there. 

So, first I should start with where I was. I attended the 2015 Autism Education Summit put on by Generation Rescue. 

From here

It was 3 days of intensive learning from some of the top names in the Autism community. I got to hear, and personally speak with, the likes of Dr. Dan Rossignol, Dr. Jerry Kartzinel, Dr. Richard Frye, and so many others. SO many others. They not only spoke but were extremely available during their sessions to ask questions and seek help from for your child. Yes, I took advantage of any time they had to pick their brains and they all pointed me in single direction on one of our big issues and helped with some of our other issues. 

I have notes to go through. boy do I have notes to go through. I took so many it felt like a cram session for an entire semester at school. Our kids have already reaped a few benefits from my time there, and these have been awesome changes. I am talking complete 180s on a few things. I will be sharing those this week hopefully. 

I got to meet up with a few friends who I haven't seen in ages. I got to meet new friends from online support groups I am a member of on various boards. I learned a lot about the legal front and the political front surrounding Autism and the biomedical community. I sat next to Donnie Wahberg at one point. (if anyone is a fan) That was my weekend in a nutshell. It was an incredible experience but I am also so glad to be done so I can bring that education home to my family and get back into our daily lives. 

Talk soon!

How I Got Started on This Path - Part 3

From here

To read the first two parts of this story, click on these links: Path - Part 1 and Path - Part 2

We went home, huffed, and put our oldest son in PPCD. We went through and IEP/ARD. We did all the paperwork, bought him his little school supplies, and sent him off to be with other kids like himself.

We called ECI and set that up for our younger son. He needed a lot of help and they could come to our home to give it to him.

But, honestly, I never was happy with PPCD. You see, my husband and I always wanted to homeschool our kids. We discussed it before we got married, discussed it even more before we got pregnant, and it seemed so sad that it wouldn't happen. But, the experts said to put him in PPCD so we did. But, as we saw what was going on in PPCD, the lack of therapy (he got 19 minutes/week of group speech therapy and nothing else, even with his other issues), and the disruption to our family's natural flow, we started to question it. I finally asked my husband WHY he had to be in PPCD. What was he getting there that we couldn't give him. And THAT was my step into a more toxin free life. I questioned those who were "in the know". Yes, it started out that simply and quietly.

We decided there was nothing they could give that we couldn't, and we even dared to suggest we could do it better. I was so happy the day I pulled him out of school. We brought him home and I started a mad search for therapy options. We found that. I started to try and figure out what he needed on a daily basis. We figured that out.

Time rocked on and I started to research more. The more I searched the more I found. The more I found, the more we changed. We looked at the medical care we were receiving. I learned about something called biomedical approach in the Autism world and we visited our first DAN (Defeat Autism Now) doctor. That was a huge, massive eye opener. Through it all I told no one what we were doing. Again, I wanted that unbiased eye on our sons development. We started very simply with things like Methyl B12 (MB12) injections. 10 days into treatment our older son said his first words in over a year. He looked across the room towards me and said, "can we take a picture of that". I about hit the floor. I thought I was dreaming. I honestly asked him, "what did you say". He looked at me like I was the one with a comprehension problem and said slowly, "can we take a picture of that". I called hubby in almost a panic. Something was working. People at church, my Mom, family, all asked what we were doing, what had happened to change him. It wasn't just us, he was really doing better with a simple vitamin.

We added more items as tests came back showing us which direction to go. Our younger son was harder as sticking him for blood was pretty much impossible. His veins were so thin, so deep, even NICU nurses attempted and couldn't do it. It was a mess. He was a mess. But we rocked on with no sleep, screaming all the time, and the only relief we found for him was if I wore him in a sling. He wanted his face covered mostly, to be held by me, and to be rocked gently as I wore him. It was his only relief.

For those who have a kid like this, you know where that was leading. Yes, he has Sensory Processing Disorder. But, at the time, we had no clue.

We had a DAN doctor now, we had a pediatrician who used homeopathic, natural, and traditional helps. We felt like we were, at minimum, in good hands with medical care. We were going to homeschool, so we knew educationally we were set. We had therapy going for our son, so that was all in order. Life was good.

Yeah, you know that means the other shoe will drop soon.

Read part 4 of our story later this week.