Navigating Death with a child with Autism

Dealing with the death of a loved one is difficult and heart-wrenching.  No question.  Dealing with a child with autism who has just lost a loved one  - perhaps even harder. 

When my beloved father-in-law passed recently, it was a learning experience for all of us.  I had never lost anyone that very close to me and I had never had to teach children about death. 

My kids were very close to their grandfather and he had always made the effort to come and stay close to them for at least 4 months out of the year…every year since they were born….even though he lived far away.  When he arrived at the door, all three kids came running and shouting “Poppa Jay!!! Poppa Jay!! You are here!”  Then they proceeded to bombard him with the day’s news.  (I can assure you I don’t get that kind of greeting.)  He loved them dearly and cherished every moment with them.  And the feeling was mutual.

For a few months prior to his death, we had a feeling that it was coming so I read the kids books about death.  Books about what happens at a funeral.  Books about how people are sad after someone dies.  Books about how people cross over and you can no longer see them, but they will always be with you.  A great one that I highly recommend is called “Waterbugs and Dragonflies.”

When my husband sat the kids down to tell them of his passing, Marley simply got up and walked away.  She said, “No…don’t tell me this.”  And off she went to listen to her music. 

We gave her some time to process it and then revisited her about a half hour later.  We wanted to know if she was okay and if she had any questions.  She said, “yes, I’m okay.  No, I don’t have any questions.”  Then off she went again to be by herself. 

My husband had to leave town to plan for the funeral and I was left with grieving children.  I worried and wondered how they would handle all this.  I knew it was going to be hard but I had no idea how my oldest daughter would handle this.  The perceived notion is that kids with autism don’t feel emotion…but I know differently.  In fact, I am afraid that she sometimes feels too deeply. 

My neurotypical seven year old had the expected reaction to his death.  Hours of crying and sobbing and lots of questions.  However, I was beginning to wonder if my oldest with autism was even processing this information. 

My answer came the next night.  She had been ornery and arguing with her sister for no reason.  I left to put their little brother to bed and when I came back into their bedroom, I found her quietly sobbing on her bed.  Her little shoulders shaking…her eyes wet with tears.  When I asked her what was wrong, she said “I am going to do a magic spell to make Poppa Jay alive again.”  Then she waved her pretend magic wand and said a little chant to try and bring him back.   Then she said, “Please make Skylar stop being so sad.”  It was breaking her heart to see her little sister so sad.  

My eyes welled with tears because I had never seen her react this way.  First of all, she was upset on another’s behalf.  Typically, Marley can see me crying and not even realize that I am crying.  Secondly, I had only seen her have outbursts…never quiet weeping before.  Ever.  I sat with both girls for over an hour while they cried themselves to sleep.

When it came time for services, Marley refused to go.  There was a “party” after the services for family and friends to gather.  We tried coaxing Marley to go but she threw an all out fit at the gathering and my parents had to usher her out.  She could not even be around the idea of his passing.

About a week later, I found Marley on the floor with the book "Today I feel Silly & other moods that make my day" by Jamie Lee Curtis. She was on the "sad" page & was weeping very quietly. She said "this is how I feel because I want to see Poppa Jay again. He liked me and I miss him. I don't want him to be gone. I want to be able to see him."

She was finally processing it for herself.  Realizing she wouldn’t see him again – here on earth anyway.  So, Marley, Skylar & I started talking about all things that we loved about him and that he can still hear us.  They can talk to him anytime they want to….and he will listen.  He will be there looking out for them from heaven. 

That night, as my girls were preparing for bed, I walked into their bedroom to find them with the curtain pulled back and saying out the window…

“Good Night Poppa Jay. 

(Blowing kisses)  We hope you can catch these up in heaven. 

We love you.”

Now, when we say goodnight to each other, we also say goodnight to Poppa Jay.  Because he is listening.  And watching out for my kids.   They may not be able to run and greet him at the door anymore but he will always hold a very special place in their hearts.  And mine.  And my daughter with autism is finally processing it in her own way.  

Pumpkin & Squash Chocolate Chip Muffins

I must confess....I usually don't eat the gluten-free, egg-free food I make for my kids.  It has just been too hard to adjust to liking a new type of food.

However...I am trying and I have just reworked a recipe to transform an old favorite to a new, Gluten-free, Egg-free, Dairy-free, soy-free muffin.  The results are amazing!  Really....I eat these.  They are delicious!  This is a twist on one of Jessica's Seinfeld's recipes.

Here is it:

Pumpkin & Squash Chocolate Chip Muffins

Ingredients:

1 cup canned organic pumpkin puree (or fresh)
1 cup yellow, summer squash puree (Steam chunks of yellow squash for about 7 minutes and puree)
1/2 cup turbinado sugar
1/3 cup grapeseed oil
1 tsp pure, organic vanilla extract
2 1/4 cups of Bob's Red Mill All Purpose Gluten-Free Flour
1 tsp baking soda
1 tsp baking powder
1 tsp salt
1/2 tsp xanthan gum
1 cup gluten free, dairy free semisweet chocolate chips (I use Chocolate Dream Chips)

Directions:

1.  Preheat oven to 350 degrees.  Line a 12 cup muffin tin with unbleached paper baking cups.

2.  In a large bowl, mix together the pumpkin puree, squash puree, sugar, oil and vanilla.

3.  Add in the flour, baking soda, baking powder, salt & xanthan gum.  Mix thoroughly.

4.  Mix in the chocolate chips.

5.  Divide batter into the muffin cups.

6.  Bake for about 25 minutes.  Cool on a cooling rack.  YUM!!

Enjoy.
-Kelly

Xander's Allergic Reaction

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Today, I want to write about my third child, who is two and a half and has severe food allergies. 

I have been through three allergists with him.  The first allergist told me that basically I was crazy even though he skin prick test showed him highly allergic to peanut, dairy, egg and rice.  Because my son reacted to my breastmilk - this allergist thought that was highly unlikely.  He refused to give my son an IgE blood test and told me an EpiPen was unnecessary.  Seriously?  So I switched allergists.  

Here is a picture of the rash around his mouth that would not go away.

Since my son had a peanut allergy, I went to the peanut allergy guru in our area.  This doctor refused a skin prick test because my son had one 6 months prior and refused to skin prick test him for any different foods, even though he was only tested for 6 foods.  He did however, did run a blood test on those foods that showed up on the skin prick test and the results were remarkable.  My son was off the charts for peanuts, dairy & eggs and moderate for rice.  Again, I was treated like an idiot by this doctor for wanting more testing for different foods and he basically told me not to be so paranoid.  He did however; issue an EpiPen once those blood tests came back.

I was still not happy because my little guy did not sleep well at night and he started to get constipated.  He had a rash around his mouth that would come and go even with removal of these allergic foods.

So when it was time for his next appointment, a year later, I switched doctors again.  This time, the doctor listened and I could see him get more and more concerned as I listed our family’s history of environmental allergies & asthma, our Eosinaphilic Esophagitis and food allergies.  He did another skin prick panel and I begged him to include things like soy and wheat and tomatoes, which he did.  He ordered a full IgE blood panel including a TOTAL IgE to see how bad the problem was. Total IgE came back at almost 500, which is extremely high for an almost 2 year old.   And the blood panel showed he was indeed severely allergic to wheat in addition to all these other foods.  Once I removed wheat from his diet, he began to sleep better – finally!  And we no longer needed the steroid cream for the constant rashes around his mouth.

So I finally knew where we stood.  But I didn’t know how he would react if he got peanuts or dairy or eggs because he had never had them outside of in my breastmilk.  Well….once, he ate a bite of a cookie that had egg baked into it and he vomited 5 minutes later.  But, other than that, I was clueless.  The allergist told me he was likely to have an anaphylactic reaction if he ingested egg or peanuts but no one could be sure.  He made me understand that I was to have Benadryl and an EpiPen everywhere we went. 

This is hard for me to write because the experience is still fresh in my mind and heart and because it was so very scary.  I still lie in bed every night before I fall asleep thinking about it and wondering what is going to happen next time.

It was Easter Sunday and we were at a beach house for the week.  Thankfully, my parents were there too for a rare visit.   I bought my kids dark chocolate eggs for their Easter baskets.  None of them can have dairy but the ingredients said:

“Contains soy.  May contain peanuts, tree nuts, milk, egg.” 

I thought this was okay because my 2 year old son had eaten things that said “may contain milk or egg” or “made in a facility that processes nuts” before.

I was wrong. 

After dinner, the kids got into their chocolate and I was sitting at the table talking to my parents not paying much attention to how many chocolate eggs my son was eating.  I told my husband that was going to take the kids down the beach for a walk and he happily agreed as he did the dishes. 

However, as we were out there – my son started coughing.  I bent over to see him in the windy, cool evening and saw that he had sand in his mouth.  I thought that was why he was coughing and decided I needed to get him inside – then suddenly & thankfully, my husband showed up.  I asked him to get Xander inside to rinse out his mouth.  He scooped him up and I brought the girls in.

When I got inside, my husband said, “Kelly-he doesn’t look so good.”  Xander was coughing.  But also doing this weird thing like he wanted to throw up but nothing was coming up. 

My mind flashed to a blog I read a week earlier about how the coughing can be difficulty breathing and I dashed upstairs to get the Benadryl just in case.   I syringed it into his mouth and he swallowed.  We continued to try to get him to drink water but he could only speak one word at a time without coughing. 

I pulled him into my arms and tore his shirt off him to watch his breathing.  Then I saw it.  A rash was spreading across his torso.  He was itching like crazy. 

I looked at my husband and said, “Oh shit – he’s having an allergic reaction – grab the EpiPen & the keys – we gotta go!”

We were in the middle of nowhere and I had no idea where the nearest hospital was.  My mom reported that there was an Urgent Care right up the road, so I jumped into the driver’s seat and headed that way.

I made Chris watch his every move in case he needed to use the Epi, but Xander was starting to cough a bit less now…the Benedryl was taking hold but he was still squirming like crazy because he itched.  The Urgent Care was closed – of course – it was Easter night. 

My husband’s iPhone was only reporting animal hospitals nearby.  We passed a cop waiting for speeders and pulled over to ask him where the nearest hospital was.  He called EMS because he said they could get here faster than we could get to the hospital. 

So there I was…..pulled over on the side of a country road….my minivan door open to reveal a very itchy little boy that was coughing less and less now but being very good watching his TV show in the backseat. 

My adrenaline started to wear off as we waited for EMS and I started to shake.  It was a windy, chilly night and I failed to grab a coat and was still wearing my flip flops from earlier.   I felt like my knees could buckle and the tears started to stream as I realized the worst was probably over. 

I kept thinking, “How can I live like this?”  “How can I live thinking that the next bite of food could kill my kid? - My adorable, sweet, loving, smart and funny 2 year old blond boy?” 

Anyway – EMS came and indeed his lungs sounded much better – only a little wheezing, but we headed off to the hospital 30 minutes away just in case. 

That night, I slept in his room, next to his crib and woke every few hours to be sure he was still breathing well. 

I have lived through the scary parts of autism with my oldest child and lived through my middle daughter not being able to eat….but this was different.  It was FAST.  And it scared the hell out of me. 

CoQ10, Irritability and Vitamin B2

These past few weeks have been awful with Marley.  Her third grade teacher had about exhausted every trick in her book.  The resource room teacher was afraid of Marley just coming into her room to get out of her daily activities.  She expressed concern to me when Marley confided in her she “hated school.” 

Marley has been irritable, miserable, anxious and sometimes downright defiant.  Like when she got up from her desk at school and turned to face the class and said, “I’m outta here!” and left.  Who knows where she was going…she just didn’t want to be there anymore.  She screamed and cried about everything.  Every single day I was getting a call from the school.  Their absolute last ditch effort to get her to comply…..mom’s threats of taking something cherished away. 

I knew her anxiety was through the roof when she started chewing on her fingernails again and simply tearing off the skin around her fingers.  We had worked so hard to get that in check earlier this year….to see it back again was heart-breaking.  Things were simply getting worse despite my best efforts to reward, bribe, and even threaten her with removal of cherished items.   

When things like this happen, I always look to what has changed.  An environmental factor?  A new supplement?  More expectations placed on her?   Maybe.

Could it be yeast?  No…we’ve had that in check for a while and she has been on Syntol with good results before this started.  And no recent antibiotics to speak of.

Could it be PANDAS?  No, she hadn’t been sick and there wasn’t any OCD about it.

Then I thought back to when I started her on CoQ10.  It was about a week before all this started to happen.  Since Marley has low energy and CoQ10 is excellent for mitochondrial issues, I thought this would be a slam dunk….but I was beginning to think again. 

So, I took her off the CoQ10 for about 3 days.  She was a bit less irritable but still cranky.  So back on it she went.  Then…the shit hit the fan.  She had a meltdown at school when another student got to publish his story on the iPad.  She walked out of the classroom again. I was called and went over to the school (with my 2 year old in tow) to talk her down.  After I left, she escalated again and had to eat lunch in the principal’s office and spent the afternoon in the resource room.  She was a mess.  It was a Friday.  There was an emergency team meeting called for the next week.  What were we going to do?

But…by that point, I was pretty sure I had it figured out.  It was the damn CoQ10.  But why?  All my research said that a rare side effect of CoQ10 was irritability, but no reasons why.  My husband said – “Pull it!  Don’t give her any more” and of course I didn’t give her anymore, but I needed to know why this was happening.  If only I knew why, I could fix it.

I started to dig.  Thank God for my network of biomed moms.  One told me to go directly to the electron transport chain and look there.

Turns out that CoQ10 works to metabolize succinic acid, which requires B2 and CoQ10 to be metabolized in the electron transport chain. Once it uses more B2, then it decreases the supply of B2 available for the metabolism of other amino acids to make neurotransmitters, especially, serotonin.  And we know serotonin is the "feel good" neurotransmitter.  Serotonin plays an important part in the regulation of learning, mood, sleep, etc.   And experts say serotonin may have a role in anxiety, migraines and appetite.

So I pulled out her last Organic Acids profile from last year.  Sure enough….there it was.  Her suberate was high meaning that she needs more B2.  Riboflavin or B2 also helps to metabolize fatty acids.  Out of curiosity, I looked back at her labs over the years at her suberate levels.  It was high dating back 7 years! 

I took a week doing this research and meeting with her team at school…but I was pretty sure I had it under control.  She was off the CoQ10 and not so irritable but still not very happy.

And so, starting on Saturday morning, I started her on a broken down form of Vitamin B2 called Riboflavin 5’-Phosphate Sodium.  She was a bit better on Saturday.  Sunday, she was happier.  By Monday, she was excited to go to school and read her non-fiction book she wrote on Chipmunks to an audience of parents at her author appreciation day.  (She is NEVER excited to go to school on Mondays.)  By Tuesday afternoon, I got an e-mail from her teacher saying…”whatever you are doing at home--- keep doing it!  Another awesome day at school today!”  No more nail biting…no more anxiety…no more crankiness. 

Once her B2 levels are up to sufficient levels, I should be able to reintroduce the CoQ10 without problems.  I’ll give her body time to get adjusted before I go there again. 

And there you have it.  When I say that I treat my daughter’s autism using biomedical interventions…this is what I mean.  We need to understand what is going on in the body in order to treat it.  Simply throwing an antidepressant at the problem does not allow the body to heal on it’s own.  And if I would have taken her to a psychologist or neurologist that’s what I would have gotten.  Her neurologist flat-out told me he doesn’t know how to read the amino acid tests and that is the lab tech’s job.  (Needless to say, he is no longer her neurologist.)

Well, in our house, it’s MY job to read the amino acids tests and do the research because unfortunately, no one else is going to do it. 

Here’s my girl reading her non-fiction book on Chipmunks!

Turning Forty

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Today, I am forty.  

As we grow, we tend to lump our life into decades.  The childhood years, the teenage years, the twenties when you are finding yourself, then the thirties….the childbearing years.  I had my kids in my thirties, but they were not the happy, go lucky, raise your normal kids type of years.  No…. my thirties were more about dealing with medical diagnoses of my children. 

My thirties started with the birth of my oldest child, now 10, and her diagnosis of Cerebral Palsy and later Autism.  It was the Autism that truly rocked our world.  

Growing up in a family of five myself, I was taught to do what was right. (Not that I always did.)  I was taught to use my manners, be kind and work hard because that is how you get ahead in this world.  My mom taught me to stand up for what I believe in.  My dad taught me to love fiercely.   And my parent’s relationship taught me to stick with my husband…even when things get hard.

But then, life got ugly.  In my thirties, I started to see things for what they really were.  I watched my beautiful, engaged, babbling 12-month-old daughter spiral backward in her development.  By 18 months old, we had lost her to autism.  There is not much that can break your heart like that.  Having your child there…but not there.  Watching other kids develop so quickly and leave her behind while she was lost in her own world. 

But in reality, I’m sure all this happened, in part so my soul could grow.  I needed to learn to lean on my husband for strength when I had no more.  I needed to learn to trust him because he loves her too.  I needed to love fiercely, like my dad, so I could see the truth.  The truth in what really happened.  I needed to work hard to get my daughter back.  I needed to develop the strength to stand up to doctors who simply wanted to medicate my two year old.  I needed to teach myself everything, just as my mom has in her life, so that I could learn HOW to bring her back to me.  

Little did I know that I would spend the bulk of my thirties learning about gut flora, methylation, candida overgrowth, nutrition, adrenals and mitochondrial dysfunction. If I had known in advance, I certainly would not have majored in business and marketing in college. I have spent the last ten years changing the way my family eats and lives life.  

There have been many tears and long nights in the past ten years….but I have also felt intense gratitude and incredible highs when she started to come back to us.  I now know my daughter…. something I feared would never happen.  I can hear her voice.  She tells me when she is nervous, angry or happy.  She tells me that she loves me.  She gives me unprompted hugs and tells me she is sorry if she has made a day particularly hard for me. 

During all this, I have had the honor of getting to know an amazing group of mothers.  They are autism moms.  And they have shown me the way.  They have taught me to read medical studies on my own.  They have held my hand when times got tough and helped me find answers to my daughter’s problems.  And these answers, incidentally, also helped my second child with sensory processing disorder and my son with severe food allergies.  And now that my daughter is recovering, I have the honor of holding the hands of newly diagnosed parents when they need me.

Needless to say, I learned more lessons in my thirties than I have my entire life.  And I feel stronger for it.  My gray hairs and crows feet are earned.  I guess my parents knew what they were doing when they named me Kelly.  In Irish the meaning of the name Kelly is: warrior.

And now that I have looked back, it is important to look forward.  I try to take one day at a time because when you live with autism, you never know what tomorrow will bring.  But I am optimistic.  I am living in a time when parents are demanding answers.  When passionate parents are healing their own children despite the odds.  And hopefully, we will see a cure in my lifetime.  There are already promising recovery treatments, although the results vary from child to child.  Despite my wariness of the medical community because of their denial of vaccine involvement and their insistence of the use of anti-psychotic drugs, I am excited to see what the next ten years will bring.  Functional medicine and Epigenetics are on the rise which is very promising.

As my husband always says…it is not what happens to you…it is how you react to it.  It is all about attitude.  And I love my children fiercely and that will never stop.  I will continue to fight for them, enjoy them, learn from them and hopefully continue to heal them.  God willing.  Here’s to the next decade of healing.  

Solving the Feeding Riddle

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Eating.  Who would have guessed that such a simple, fundamental thing could cause such headaches?  My first child…the one with autism…was a great eater.  And I thought I had seen it all with her.  But my second child brought a whole new set of challenges to my life.  My sweet Skylar was diagnosed with sensory processing disorder at only 15 months old and her biggest symptom was feeding….or lack thereof. 

So what do you do when you have a child that won’t eat?  Or is so picky that she only eats 5-8 foods?  And they have to be prepared a certain way….at a certain temperature….at a certain time? 

I found out the hard way that solving the feeding riddle is not easy.  There are a lot of components.  For example:

If a child has an aversion to textures….like anything not crunchy or not 100% puréed or anything with mixed textures like soup, then they likely have an oral-motor problem.  If the child gags on food, then the child likely has a developmental delay in swallowing.  Did the child learn to move food around their mouth properly?  Likely not.  As a result, the child gags for fear of choking. 

However, there are other reasons for gagging too.  There are medical reasons like reflux or Eosinaphilic Esophagitis.  There are behavioral reasons.  Sometimes these are self-taught behaviors when the child is experiencing pain.  There are several sources of pain including constipation, chron’s disease, celiac and others.  They learn to be very wary of food very quickly because food is associated with pain.  And lastly, there are sensory related issues.  Occupational therapy can help a great deal with feeding in some kids.

Here are some tips from our Occupational Therapist that may help with your child:

1. Put one thing on the plate at a time, so not to over-stimulate the child visually. Add more as tolerated. 

Skylar is shown below with only a tiny amount of rice on her plate.  That is all she could tolerate seeing at once. 

2. Use salt. Salt stimulates the salivary glands and makes you hungry.  Starting a meal with something crunchy and salty can actually warm up the mouth and get it ready to eat.  And most kids like salt.  Adding it to veggies or other food is really not a big deal. You can always pare back.  

3. Find a spread they like and add it to fruit & veggies to get them to try new things. In the beginning, we used Nutella on sliced apples, mangoes, etc.  My daughter would try almost anything if it were doused in chocolate. 

4. Do the “smell it, kiss it, lick it” approach with each new food. Just getting over that hurdle is big for some kids.

5.  Use a reward system.  A sticker chart works well.  Work on one food every day until he or she will eat it consistently.   

6.  Practice eating in the morning or afternoon when the day's sensory activities have not brought the child to exhaustion.  Dinner-time is particularly hard.  And practice in a quiet environment with soft soothing music when the child is hungry.

 Here is Skylar at feeding therapy.

I’m here to tell you that juggling a non-verbal child with autism and a toddler who does not eat is no walk in the park.  Let’s just say that we spent a LOT of time at the Occupational Therapist’s office.  She would go to parties and not eat anything because she simply could not eat in a stimulating environment.  This would lead to meltdowns.  People were confused as to why she would not eat.  I would usher her to a corner to feed her anything just to get something in her to sustain her until we got home.  Chocolate cake. Whatever.  I just needed her to eat.  When we got home, I worked on feeding with her constantly.  Hours every day. 

And so, my daughter with SPD and feeding problems did four years of OT and after all that could finally eat almost half of a turkey and cheese sandwich and a tiny bowl of mac & cheese (at different times of course), but she still struggled with most other foods and it took her a LONG time to eat.  In all other sensory areas, she was thriving.  So we were “graduated” from OT and off she went to kindergarten.  But then the headaches started.  At least once per week.   And the tummy aches that she had always complained of got worse.  And dinnertime was still a battle EVERY day. She was five years old.

I had to understand what was happening.  I finally ran an IgG blood test on her to check for food sensitivities.  Her test came back loaded with them.  Twenty-six of them ranging from severe to mild.  (A sure sign of leaky gut.)  The severe ones included gluten, dairy, turkey and peanuts.  Oh NO!  No more turkey and cheese sandwiches or mac and cheese.  We were back to square one.  My heart dropped.  FOUR years of work for nothing!  I was scared to death.  She was already stick skinny and barely ate.  She ate about 8 different foods.  I had visions of a feeding tube that I tried to suppress.  By this time, she was nearing her sixth birthday.  I sat her down and explained that the test showed that she is allergic to some foods and she is going to come to the store with me to pick out some new foods she would like to try.  She was reluctant, and after crying agreed to try.  My oldest (due to IgE food allergies) was on a gluten free, dairy free, egg free diet, so I had some experience in this area. 

It took some coaxing for her to try “new” crackers and “new” chicken nuggets, but my child who had always been severely averse to trying new foods did very well.  Yes…I bribed her with small toys the first few times to get her to try the foods, but after that, she did well.  In fact…the strange thing was, that as the months passed, she slowly grew more willing to try new foods.  And oddly, her headaches were gone.  Never to return.  As were her night terrors that she had suffered from for years.  And thankfully, she started to gain weight.  But she still had tummy pain.  Six months later, the next stop….the pediatric GI doctor.

They did a complete workup and the doctors were concerned that she may have Eosinaphilic Esophagitis (EoE).  Her older sister has it, yet Skylar seemed to display the clinical signs:  drooling, sometimes regurgitating food, very selective diet, extremely slow eating.  Although these things had gotten better since her diet change, it was still a problem.  They decided to do an endoscopy.  Thankfully, it came back clean.  However….she was off all allergenic foods at the time of the endoscopy, so we truly don’t know if she does have this problem or not.  Her sister’s EoE cleared with removal of allergenic foods.  

This is Skylar after her endoscopy.

In addition, an x-ray showed she suffered from severe constipation and blockages in her GI tract.  This was shocking to me as she had regular bowel movements everyday.  Apparently, just not enough.  After several weekends of cleanouts with lots of magnesium citrate, she started to eat better and her complaints of tummy pain started to wane.  A second x-ray still showed she was still moderately constipated.  We continue to work on clearing her out and getting her pooping normally.  And through all of it, her eating has gotten better.  She started to eat granola cereal with rice milk!  A mixed texture food.  The one she struggles with the most.  Then she started eating soup.  We started with the broth.  Just one or two spoonfuls.  Then she ate the GF noodles and chicken out of the soup.  Now, she is finally starting to eat them together. 

Then we discovered Syntol.  A probiotic and digestive enzyme that targets yeast.  A wonderful side-effect is hunger.  It works best when you start on high doses. (12/day, then work down) My child is now coming home with everything eaten from her lunchbox! This is an enormous feat.

Lastly, I have started her on a zinc supplement which has helped her in trying new foods.   The major zinc protein in saliva is called gustin.  Gustin influences your sense of taste.  Because of this relationship between zinc and taste, and because taste and smell are so closely linked in human physiology, impaired sense of taste and smell are common symptoms of zinc deficiency.  Supplementing with zinc can help kids with feeding problems.   Click here for the study.

We have always used liquid zinc because if you are zinc deficient, then you can’t taste it.  I am waiting for the day that my kids say…”yuck!  This juice tastes gross.”  That is the day I will know they no longer need the zinc. 

Please don't mix the zinc with an acidic juice, like orange.  If you do, it is sure to give the child a tummy ache.  

This is a long battle and we are still working on it, but she eats with the family now.  She eats what we are eating.  It still takes her longer and she eats less than the rest of us, but she has made huge strides with these interventions.  Here she is eating her gluten free spaghetti dinner with a full salad.  She ate the whole thing!  

Crossroads

Kids change you.  They do.  They make you love more, love deeper, give more.  They make you fear the unknown and they bring out a part of you that you didn’t realize was there.  

But what happens when you realize that your perfect child isn’t so perfect?  He or she suddenly isn’t doing the expected things.  They are no longer making eye contact or they are constantly ill.  The dark circles under their eyes scares you and they seem more content to play by themselves than with others.  They may be constantly constipated or have chronic loose stools.  They can’t sit still for more than a moment without some sort of high energy, colorful TV show to keep them still.  And even then, sometimes, they just jump and watch.   

 You take them to your pediatrician who says, “let’s wait and see” or  “she is still young” or “boys are rambunctious, it’s okay” or “lots of kids are constipated, it’s normal.”  You press on and take them to a specialist, who tells you that your life will never be the same because “Your child has Autism.  He may never talk.  He will never be the same as other kids.”  Your heart is broken and you can barely breathe. This is your baby.  How could this be?  How could THIS be?

It is at this point that you have to make a decision.  This is the turning point.  This is the crossroad.  Do you give your child the antipsychotic drug that was prescribed to them by their prestigious doctor?  Or do you search for other reasons for their erratic behavior?  Do you scour Google for any and all things that are helping other children with autism?  When you run across that article that says, “My kid is better because I treated his GI symptoms!” what do you do?  Do you say….but my doctor says that a GFCF diet doesn’t work.  Do you say it’s too hard to try?

That is the thing that is different about Autism.  If your child has cancer, there is a protocol.  You do A, B and C.  But with Autism, it is go to Speech and Occupational Therapy, take this drug and I’ll see you again in a year.  What the hell?  Really?  It is left up to the parents to find your own way.  And all kids with autism are different.  They have different symptoms.  Some may have Cerebral Folate Deficiency.  Some may have methylation gene mutations.  Some may have thyroid problems or gastrointestinal problems.  Some have food allergies.  Some have eosinaphilic esophaghitis.  Many have heavy metals in their bodies that they cannot detoxify. And MOST have mitochondrial dysfunction, which makes them very susceptible to toxins.

Our babies do not need anti-psychotic drugs…they need medical intervention.  They need to be tested for all of these things and more.  They need to be treated as sick children.  Because truly….autism is a set of behaviors.  These behaviors are caused by SOMETHING.  And unfortunately, it is up the parents to find out what.  It is up to us to coordinate several doctor visits and figure out where to send them. 

Yes, kids change us.  And being a parent of a child with Autism makes you a fighter.  Because if you don’t fight for your child’s health, no one will.