Monday, January 22, 2018

Why I Shop the Way I Do (or "Please, Child, Eat!")


This is a post I've thought about writing for a while, but kept putting it off because I was worried it would come across as a pity trip (which doesn't sit well with me) or worse.  I've been up for the last two days with a son who managed to come down with the flu or other "mimic" type of virus and had received some e-mails from people who had, I honestly do believe, good intentions on helping me to be a better parent and getting my son to eat in a way that would help his autism.  I thanked them for their advice and just moved on.  I've learned to do that over the years.  Well, mostly.  I'm getting better at it.  No, really I am!

What finally got me to write this post was actually another autistic parent who wrote me.  Her child is much younger than my son is and she was actually writing me in desperation to see if I could give her some insight into getting her son to actually eat.  Not eat "real food", which is my continuing quest with my son anymore, but getting her son to eat any food at all other than powdered rice cereal.  Her son had been diagnosed with autism last week and had been diagnosed with failure to thrive at the same time.  She'd been in to see all the specialists for months and wasn't getting any answers on how to help him to eat anything but the powdered rice cereal.  She was desperate for any advice I could give her.  Literally a hand reaching out to someone who she hoped would understand and just hold that hand in understanding.  I gave her as good as advice as I had, which probably would amount to about two cents, but I hope I at least gave her some ideas on where she could go next to try and help her little man.

I could feel her panic, her sense of failure and utter helplessness through the e-mail.  Not because she was the most eloquent writer I'd ever read or anything (not that she did a bad job, mind you.  She got herself across just fine), but because it brought back so many memories for me.  I'd been there.  And I felt so, so much empathy for her.

So, I thought I would just put this out there and ask that the next time you see a person load up the belt in the grocery store in front of you with junk food and someone kiddingly asks where the party is going to be, only to hear the person reply that there is no party that they have an autistic child, please reserve judgement.  You have no idea what that adult has been through and that they may be very, very grateful that their child is eating food, any food at all.  Calories are calories sometimes and we know it well.

Alvah's struggle with food and his digestion started on day one.  Literally.  Within a few hours of being born he started choking if he was lying down.  The nurses at the hospital assured us that often times newborns would choke on amniotic fluid that was left over in their lungs and things and so long as they were able to clear it they would be fine.  I quickly found with Alvah this was not the case.  I had to literally keep him on my chest with me elevated to stop him from waking up choking on whatever he had eaten before.  A week into his young life, the first day we got him home from the hospital, the projectile vomiting began.  He would choke and vomit to the point breast milk/formula would come out of his tear ducts when you were feeding him.  It was terrifying and all too regular of an occurrence with him.  His dad and I would hold him like we were holding dynamite with a questionable detonator on it, waiting to see what would happen.  I had to feed him a half an ounce at a time and then burp him and pray.  We got him down to where he'd vomit once every couple of days, than a week.

I took him to our pediatrician at the time only to hear that some children "were like that" and he'd "grow out of it".  I actually asked point blank if it was normal for a child to puke like a scene from the Exorcist and she told me yes, yes it was.  I've since talked to occupational therapists and feeding therapists throughout the years who want to hang the woman by her thumbs for making him suffer like that as they knew tricks that might have helped him.  It took him YEARS to grow out of regular vomiting episodes.  Stopping him from vomiting when brushing his teeth became a huge deal, getting him to take any type of medicine was an even greater one.  And he still had to remain elevated or he'd wake up choking.  When he was 18 months old I finally moved from our couch as he was getting so big we were barely fitting and figured out other ways to help him as much as we could to keep food down and grow.

Somehow, despite his body hating to keep food down and being covered in eczema all the time, somehow he grew tall.  Didn't have an ounce of fat on him, but he was always a tall kid.  He finally submitted to me introducing solid foods at 11 months and he would only eat powdered rice cereal with applesauce and formula mixed in for about another 4 months.  Nothing else worked with him.

And then, blessedly a few things happened.  My in-laws let my son sip some soda out of a straw and try a french fry from McDonalds (things I wouldn't have had the guts to try with him as I was terrified of him choking or projectile vomiting).  And he actually loved it!  For the first time my son was actively chewing things and keeping food down.  He then discovered cow's milk in his bottle and had no problem transitioning to that as well.  I started working with him, carefully introducing new foods and I MEAN carefully, and I found that he actually did like some foods.  He loved my home made chili, minestrone, pizza, different flavored rice dishes...I thought we were finally on the way to a real food diet and I could finally get him off of powdered rice cereal and applesauce.

And then his skin kept getting worse.  His behavior, which had always been "not quite right", started getting worse.  He developed fixations on anything that spun, wouldn't answer to his name still, wouldn't point, wouldn't play with toys...the list went on.  He developed an unhealthy obsession with flicking paper and if the paper would tear when he was flicking it he would find the nearest hard object and bash his head into it repeatedly...benchmarks and milestones started passing him by.  At 21 months we got him into infant learning and were introduced to the M-CHAT and got the advice to seek out a developmental pediatrician to find out for sure what was going on.  Finally when he had just turned three, we got the diagnosis of autism.  Six months later, in an attempt to help his eczema and hopefully get him to concentrate better (and thus help him deal with his autism better) I got him into an allergist.

I deeply regret going to an allergist back then.  I know it's stupid to say that because allergies are nothing to mess with, but before we got the food allergies diagnosed, Alvah was happily eating peanut butter, chili and other food items.  We got the allergy results back and found out that he was allergic to peanut (severely, which over the years has turned into a life threatening, nothing to mess with allergy), garlic (this ended up being the big one with him on loss), oats (which threw out his favorite organic toddler greeny puffs), coconut oil and derivatives and others.

This is where my empathy for that mother kicks in, in a big, big way.  We were told garlic was a life threatening allergy and we took it very seriously.  I started making my own chili powder because, it turns out, pretty much everything in the entire universe has garlic in it if you cook with it.  I tried to make flavored rice that wasn't from his favorite packaged brand...he would have none of it.  Where I had him eating tuna fish sandwiches, once I had to make my own Miracle Whip or mayonnaise, he wouldn't touch them.  Chili was turned on so fast when the chili powder didn't have garlic in it.

The list went on.  Fast forward six months to us, in desperation, going to a nutritionist and dietitian to try and get my son to eat something that wasn't cardboard, dirt, tire rubber, or uncooked white rice.  That was literally all he would eat, whether you liked it or not.  It got to the point where I'd try to get him to eat in his bouncy seat because it was the only thing that would keep him somewhat calm at feeding time and I'd turn around and find him digging under the edge of the carpet and eating any dirt he could get his fingers into.

The nutritionist looked him over and told us not to panic because he still had some body weight left.  He had lost nearly 1/3 of his body weight and he didn't have much to spare to begin with, but with his height being so high he didn't fall into the "failure to thrive" category, even though he was in the lowest 20% for weight.  They gave us a feeding schedule to put him on and other things to try, but didn't give us any real advice to help his PICA recede and his want to eat anything resembling food to present itself.

We started him on intensive feeding therapy for years at OT after that to try and get him to eat anything that was safe for him to have.   The foods that probably saved his life, and I wish I was joking here, was "Enjoy Life Chocolate Chips" and McDonalds french fries (once we found out that they just plain didn't make his skin or anything worse and just said to heck with it and started feeding them to him out of desperation).  He would eat the mini chocolate chips, it turned out, by the carload, which was a blessing as well.

My father passed away the year we saw the nutritionist.  That happening and a dream my step mom had about me (a discussion for another time) made me realize that I had to find a new pediatrician who knew my struggles and would be able to offer real advice to help me.  And so, I found our current pediatrician.  When I called her office and spoke to her secretary, I, on the verge of tears, said that I needed someone who GOT what it was like to have an autistic child.  The receptionist calmed me down and then cheerfully informed me that the pediatrician had an autistic son and then asked me to come in and meet with them and talk to them.  I took Alvah in to see them the next day and had a introductory exam done.  The doctor was concerned about his weight, just like I was, and she calmly asked me, "Is there ANYTHING other than cardboard, dirt and uncooked white rice that he'll eat?"  I told her McDonalds french fries and the chocolate chips.  Her reply, "Great!  I always tell parents of kiddos like him to find ONE high calorie thing they'll eat and feed it to them as much as they want it.  Go with the chocolate chips.  It'll keep a bit of weight on him if nothing else."  And so we did.

Finally after a couple of years we lost the garlic allergy and we started introducing back in foods that had previously been happily consumed to Alvah's diet.  And we quickly found out that when autistic kids drop a food?  They have this bad tendency to drop it forever.  It's fun like that.  I've tried for years to get him to eat chili again, or minestrone, or pizza.  I get a thrill when he takes a bite of pizza that I put on the table, but so far it's not a constant.  He did discover he liked Cool Ranch Doritos one day at a family get together and he found Cheetos by stealing them off of my plate one day out of curiosity (one of my guilty pleasures).  Those two items, along with Tilamook cheese (another random thing he grabbed off of a plate and liked) and the ever constant milk (that he drinks out of a bottle at night), have managed to put some weight on him over the last few years with the on again, off again, like of Oreo and Chips Ahoy cookies.  It's kind of nice walking into the pediatrician's office, or the dentist, and hearing, "Alvah, you've gotten fat!" in a kidding way and then them gushing about how his face has filled in and he doesn't look skeletal anymore.

To the few people who have suggested different diets to me to try and help Alvah, I appreciate it, I really do.  In the past, in desperation to help his behaviors, PICA and eczema we have tried pretty much everything.  On the list (since these are suggested a lot)...

1.  The gluten free diet (resulted in him reducing to an animal state, basically drooling in a corner for 3 months before I said enough and stopped it).

2.  Saw a naturpath and tried doing a structured gluten reduced diet, along with dairy free, corn free and potato free with various herbal supplements and vitamins to help heal his gut.  Failed.  It was a struggle getting the supplements and vitamins down him, but I did manage it, but we just didn't see any change in his eczema or his autism behaviors.

I'd go into the other things I've kind of forced on the poor kiddo in the past to see if I could help his allergies (honestly, helping his autism through diet lost it's appeal to me after the gluten free massive epic fail as seeing him so withdrawn and miserable...I never want to see him like that again.  Ever), but it would take a couple of large volumes.  I studied herbology to make all his skin products when he was diagnosed allergic to pretty much everything that could go on your skin, made yellow dock root tincture to get iron into him when we found out he was anemic (and it worked so the battle was worth it there).  I read every new study that comes out and think hard before I try something, but I do try.

So, yeah, when people tell me that I don't try hard enough to feed my son healthy meals...I kind of see where they'd get that impression looking at what I buy for groceries.  But you know what?  I will gladly buy that box of s'more pop tarts because I know my son will willingly eat breakfast.  I will continue to buy soda because it is the ONLY thing we've found that he'll drink out of a cup at all, but also the only thing he'll drink other than milk out of a baby bottle and there is no way I will not buy soda and have him lose the skill to drink out of a cup as it was hard earned!   Every hot dog bun top he eats means he's eating bread, not cardboard.  Maybe not the type of bread I'd like him to eat, but we're getting there!  Every food he picks up, whether it be weird (garlic stuffed olives for instance), normal (like the breadsticks I made for dinner last week that I pray he will continue to eat), processed but decent (Bumblebee tuna salad) or even wholly processed junk calories (like Cheetos)...it's a small mark on the "he's eating" list and I know we'll get there eventually.

So, to all you parents with your belts loaded with junk food who mumble embarrassed about your child's diet?  Don't.  You're doing fine.  At least I think so...for whatever the feedback of some random person on the internet might mean to you :).   And to those who wish their child would eat, at all, I feel for you and I wish I could help.  I really do.  I know what it's like to see your child suffer and not know what to do.  It's hard.  And to those who have it worse than we do, and I know there are plenty, I admire you and I really wish I could help all of you and at the same time I can't help but feel grateful that we are where we are and are at a point where we can cope.  I pray to those families who don't have it as good as we do that one day you too can look back and see how far you have come with pride.  Good luck to you and God Bless!

And thanks to those who read this headache fueled ramble as I wait for children to go to sleep and pray I'm not getting sick as my throat starts to hurt.  When it comes down to it, special needs parent or not, parenthood is the most challenging thing you can do, but also it is the most rewarding.  We all do the best we can do.  And really, that is all that matters :).

44 comments:

  1. Amen! And don't feel bad for having gone to the allergist, because he might well have dropped "proper" foods anyway at some point. Many AS children do.My daughter did, no rhyme or reason to it. It is NOT your fault. Just one of those AS things we know and, er, despair about.

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    1. Good to know this. Thank you! It does help assuage the guilt I feel over it. Thanks again :).

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  2. What an educational post. I have no children, but I know those who have children with autism.
    Your handsome son is so lucky to have you as his mom. God bless you and your family and I will pray for your daily struggles.

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  3. My kids aren't autistic, but with my youngest it really is a struggle for foods at times. He's got maybe a dozen he will eat, and the odd time he tries something new, even if he does doesn't like it, I'm happy. My 10 year old still won't eat veggies and my husband always talks about how growing up he had to eat it, like it or not, but I'd rather make my oldest a pbj or my youngest mashed potatoes so they actually eat. I know some parents are blessed with kids who eat anything, happily, but those aren't mine! If theres even a strange looking clump or whatever, or its cut wrong, they don't want to touch it. I figure whatever...they are eating, they will outgrow it, or in the very least, move out one day and have to cook on their own lol.

    I'm sure others do mean well, so it's good you don't let them get you down. Everyone's circumstances are different, and blog are a snapshot, not a whole picture.

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  4. Wow is all I can say.....-- I have read your blog for a while and love it. You are a wonderful mom who has moved heaven and earth for your child. My grandson is special needs - he was born missing a chromosome - and I know people may "eye roll" when they hear he only eats a peanut butter sandwich for dinner every single night or a small yogurt with six m & m's sprinkled on it for breakfast - must be six pieces of m & m's. lunch is usually a cheesestick and some cheeze it crackers... sometimes, sometimes he will eat some banana if he is truly hungry. other than the occassional couple of bites of banana - he has no fruit or vegetables in his diet. we offer, leave out fruit, serve fruit - have toy fruits - you name it, we have tried it....sometimes at the end of the day - you are glad they ate something, drank something, and did not hit their own head too hard that day....my grandson is small for his age too - he is age five. missing chromosome, small stature, severe sensory processing disorder, social and emotional delays, lots of struggles - (cant get dressed by himself, etc) he goes to a special preschool for the past three years...he is awaiting some more neuro appointments..

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    1. Yes. All of this. I totally get it. So long as they are growing and doing okay, everything else is just syntax :).

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  5. You do what you need to. Why anyone would give advice when not asked for is beyond me. Anyone who has read your blog knows you give everything to your kids. Never apologize for what you feed him. Cheryl

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    1. You get it in real time, too. People’s politeness filter has gotten lost somewhere along the line, probably linked to increase use of technology. I just learned to smile, shrug, explain and move on as much as possible. It leads to less ulcers that way.

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  6. You're doing awesome Erika! That handsome son of yours (and your beautiful daughter) are so worth all those struggles.

    We've watched our now 15 year old nephew go through a similar battle. He now eats a particular brand of premade hamburger with sharp cheddar cheese (only sharp cheddar) in a hot dog bun! :) His parents are thrilled! And we happily make him one every time they visit. He then sits on our swing in the backyard for hours - he will occasionally let his cousins (my kids) push him but usually he tolerates having them somewhere in the area if they're relatively quiet. If it's cold or icky out, he'll watch The Sound of Music on repeat and he will let my daughter sit with him (but she can't touch him). He's safe, fed and us grown ups get some adult conversation. It's all good!

    This is a wonderfully written post, Erika. Thanks for sharing your heart and struggles with us.

    Long distance hugs,
    Lea

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    1. Oh how I look forward to the day when my son might eat a hamburger! I can very easily imagine how thrilled they are!

      Ah yes, the repeat videos. We go through the rounds around here too *laugh*.

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    2. And, go figure, he won't touch anything else with ground beef or any other ground meat in it. His range of foods is still limited but it's growing! I sympathized a bit since my non-autistic kids hated the texture of ground meat until just last year.

      I remember my SIL calling us so excited when he started eating them. They were coming over for a picnic and our nephew looked really pleased with himself that he got in line to get a burger like "everyone else". Now we keep a box of those burgers in our freezer just for him and he'll dig them out if he's hungry. For some reason our Ruffles Potato Chips aren't as good as his Mom's but he'll eat the burger!

      :)
      Lea

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  7. Don't worry about what other people say. Be proud that you have been able to find some foods that your son will eat. I have four children ( 3 bio and 1 adopted) and am in the process of adopting two more. All three of my adopted children are special needs and born in a third world country. I buy and feed them whatever it takes to get food in them. Yes, I still feed my five year old with a bottle and will do so as long as I need to, even when other people give unwanted advice. The important thing to remember is that no one else knows exactly what issues you and your family face on a daily basis and no one has a right to judge you.

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    1. I am in awe of your dedication and strength! That is a lot to take on when raising kids! I have my plate full with one :).

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  8. Your little boy looks very sweet. I have often wondered why you buy the foods that you do! Will an autistic child eventually eat different foods if he/she runs out of options? For instance, they say that if children get hungry enough, they will eat what is before them. Will a reward system work? If they eat a little of this, then they have their normal treats? I'm just curious since I know very little.

    My granddaughter eats almost no vegetables. She is 8. She is not on an autistic spectrum. In her case, I think her mom (my daughter) has allowed too many exceptions in her diet. I know that when my children were little, they had to at least try a bite of something. Taste is often learned over time. Also, with four children, we had a "take it or leave it" stance when it came to food. Not everyone likes everything, and that is OK, but I wasn't going to be a short order cook!

    It must be difficult with an autistic child though.

    Isabella in Minnesota

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    1. I'm not sure of other autistic children, but no my son won't eat, at all, if you deny him foods he considers "safe" (as the feeding therapists have said to me). He will instead literally starve himself and eat dirt, soap and other non-food items and then if you give in finally and give him food he likes you are lucky if he hasn't developed a mistrust of the food as you denied him the food and so he has bad memories attached to it. It's a super rough battle, but slow slow progress gets made. I can get him to lick and even take tiny bites out of some foods now. It can take years for a food to "take" with an autistic child, so the big thing is to keep trying. I had one feeding therapist who told me she worked non-stop for three years with an autistic child to get them to lick a popsicle. That child was actually on a food bag because they would not, could not, eat. Like I said above, I feel very lucky we are where we are in the feeding journey :).

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    2. I have had people, including medical professionals, tell me that "no child will willingly starve themselves to death". To which my reply usually is "you've heard of anorexia, right?". My daughter is high functioning, and a grown up away at college now. She is literally unable to eat or drink anything if the foods or drinks she can tolerate are unavailable. And she has the reasoning and ability to know what not eating and drinking does to her. A lot of people on the spectrum don't, just like she didn't when she was younger. They just know that they feel bad (dehydrated, starving ) and they know that instead of helping them, their carers are trying to force them to eat or drink stuff they are unable to consider food. It's like someone sitting us down and trying to make us drink acid and eat Styrofoam and faeces. Is it any surprise that they react by trying to harm themselves, especially if they have to speech?

      I have also over years lost belief in any children "just being spoilt and overindulged", because each and every one of those I met in my life turned out eventually to either have AS or SPD. Or both. High functioning kids are often not diagnosed until later in life, and girls especially so, as they often have a lot of ability to mask. Most parents just genuinely do their best, and judgement and blame from their families is never helpful.

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  9. Wow, Erica... that pounded-out-straight-from-your-heart post was one of the most powerful things you’ve ever written here! Thank you so much — for the educational glimpse into what it’s like to parent a child with autism, for the support & validation you just gave to other struggling parents, for your willingness to be so open about your own life’s worries.
    Pauline in Upstate NY

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    1. I say "Amen" to Pauline's comments. Erica, I am always amazed at your accomplishments. You are an incredible woman!
      ❤️ Melody in OR

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  10. My heart goes out to you and your son. I don't have an child with autism but I had a very stubborn child who after surgery to have his tonsils out tried to starve himself and not drink either. It was only a few weeks but we tried everything. He was 5 years old and I think if it wasn't for the fact that he saw his brother eat he might have done some serious damage to himself. They put him in the hospital which was super scary for him especially since he had just had surgery and in his mind it was bad. It's nothing like you go through every day but in a small way I felt the fear and frustration of trying everything and everyone telling me to "just make him eat and drink" even the Dr. said that. As a parent I'm sure you are always on the look out for ways to make your children's lives better and unfortunately there will always be those who have "good" advice for parents. My favorites are the ones who have no kids. lol. Take care and just keep being the great mom that you are!

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    1. That must have been so terrifying to go through! So glad you son finally pushed through and started eating again!

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  11. I think this should be copied and hung in every Dr. office in the country.
    My second son, who is now 34, mentioned to me that he thought he might’ve been on the autism spectrum if he’d been to the right Dr. back in the day. He was a head-banger, didn’t speak til he was three and gave us all kinds of angst. This made me cry remembering those days. I had no idea what to do. We just kept going and eventually he grew out of all his habits. Not once did a Dr. mention any testing. Of course, this was the eighties. He has a son very similar to him in temperament. It’s interesting to see how he’s being raised.
    It’s obvious from all your writing that you are doing what’s best for your children. Kudos to you and your husband! I think your struggles with your son will certainly give insight to the woman who reached out to you! And, now that I know more about what you go through, i’ll be less inclined to make assumptions about what people put into their carts. I think you’re a rock star!
    Debbie

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    1. Wow, just seeing the list of symptoms your son had and he would have been tested pronto today. Glad time was the biggest thing he needed to get through it all.

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  12. I'm just glad you have found something that your son can eat. When our son was a baby, breast fed of course, and not thriving I couldn't believe it. Found out it is better that he can take a bottle from me and thrive, than not breastfeed. Nannie

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  13. Our oldest, our son, was a projectile vomiter for almost his first year. So terrifying; I remember feeling defeated and even rejected. Our oldest daughter has always been an extremely thin person and I listened to questions and whispers about her "eating disorders" (which she never had) for years.
    Our youngest daughter is bipolar and her emotional struggles for several years were life threatening.
    Still, I was crying while reading your post about Alvah. What a lucky young man. You just couldn't be doing a better job. Thank you for giving us all such insight into your particular kind of struggle. Your blog is truly a blessing to any parent who reads it and I hope it is a blessing to you to be sharing with us. Keep up the good work, Erika

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    1. Isn’t it amazing how each child seems to go out of their way to make you a nervous wreck in one way or the other? They can’t ever be easy *laugh*.

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  14. Wow. Thank you for the parents insight to raising an autistic child. I understand it a lot better. No autistic children in my home,but I had the frustration of my 7 month old not wanting anything but Mom. Drs. acted like I wasn't trying hard enough to get him to eat cereal. He's 18 and still hates hot cereal. Keep up the good work as your son's advocate. And the Mom who is struggling to find anything her child will eat - I'm sure she was thankful she had you to vent to as you understand the struggle. Thank you for the information.
    Sheila (Michigan)

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  15. You GO, Girl! My son is a special needs adult, and I know all about the well intentioned suggestions you get but have to pass on because you have tried it, and both you and your child turned out miserable. As long as he is eating, and the pediatrician is happy with his progress, and Alvah is thriving, you do what you gotta do.

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  16. Thank you for your post and insight into part of your life struggles with your son.

    My oldest daughter has Rubenstein-Taybi syndrome. She was diagnosed at about 2 years of age. My daughter had problems from birth with feeding, constipation, frequent colds and respiratory infections, unexplained fevers, vomiting and as time went by, she showed 'delayed development'. I can relate to your frustrations of taking a child to doctor's and other specialists for help, only to receive no help. There was no internet when my daughter was a baby and those around me soon stopped offering advice because none of their advice worked. My daughter had cyclical vomiting and fever episodes, but each time I took her to a doctor and described her symptoms, I was told she just had a cold.It made no sense that my daughter got a cold every 6 weeks and went through the same cycle. Eventually we were referred to a paediatrician and the diagnostic procedures started from there, finally leading to a diagnosis.

    My daughter never had the eating problems you have with Alvah, but she could not suck properly and when I gave her a bottle, half the milk went down the front of her. We found that cows milk formula caused here constipation, tried goats milk, no help, then soy milk, which was ok for a while, then she became constipated again. By this time she was eating some pureed foods and I mixed in all sorts of powders from the health food shop to get vitamins and minerals into her. I didn't know what else to do. She used to vomit frequently, and I grew to hate mealtimes because I would spend an hour getting some food into her, only to have her vomit half of it up again.

    My daughter has likes and dislikes of food. One of her biggest problems with food is poor chewing skills. Anything that she deems 'too hard' she will not even try to eat. She has a very high palate that food gets stuck in and she is in danger of choking, so we need to keep a close eye on her when she eats.

    My daughter turns 31 years old in a few months. She is non-verbal, but communicates by a combination of signing, gesturing, using her photo communication books that I made her and pointing at things. She is mobile, but a reluctant walker. She needs assistance with all activities of daily living. She is both a joy and a pain in the butt, and I would not be without her.

    I remember years ago, when she was a baby and toddler, spending many nights lying in bed and crying, because I did not know what to do to help my daughter. I knew she was struggling and suffering, but I could not find any people or information to help. I did the best I could with the information I had and learned by trial and error what worked and what didn't with her diet, feeding her, caring for her through her vomiting and fever episodes and so on.

    One of the most frustrating things I have found over the past 30 years is accessing information. There is help available, but you need to know what questions to ask to which people. No one ever offered information without my asking questions, even our paediatrician, who was an experienced specialist. My disabled daughter was our firstborn child. We knew nothing of disabilities or services available to help disabled people. It would have been so helpful to have some guidance, rather than only receiving information when we asked the right questions. You don't always know what the right questions are.

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    1. I hear you about the joy and the pain in the butt thing for sure lol!

      And yeah, there were many nights and many tears throughout the years. I still have them once in a while. Tears are good. They clean the soul’s palette so you can get up and try again tomorrow :).

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  17. As an aside, my second child, my only son, is on the autism spectrum, but the high functioning end. I struggled with raising him (he is now 28 years) and his tantrums and aggression and emotional outbursts. Once again, I had no one around me who was able to give any helpful advice. I remember a carer for my daughter commenting that she though my son had ADHD. I took him to see our GP and described in detail the problems we were having with my son. The doctor said that my son did not have ADHD because he was able to sit quietly through the discussion, and assured me that my son would "grow out of it". That was as much help as I ever got for him. Once again, we muddled through and worked out ways of caring for him. He did not receive a diagnosis until he had a psychological assessment done years later at 19 years of age. His diagnosis explained a lot. He is doing well now. A small dosage of anti-depressant each day helps him with his anxiety and he has learnt coping skills to help with issues that used to cause him to have meltdowns. My point here is I understand the difficulty of finding medical personnel and therapists who can actually help , and when you don't have much money (like us), you just cannot afford to go from doctor to doctor hoping to find one who 'gets it'. Many people judged my son because of his aggressive behaviours and outbursts as a child. It turns out there were reasons he behaved the way he did, we just didn't understand them at the time.

    I think you are doing an excellent job of raising your children. You are doing the best you can for your son.

    And I hope that the mother who reached out to you for help is able to receive the support she needs to continue caring for her child, and that she experiences success with getting her child to eat.

    Thank you for your blog posts Erika.

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    1. So many high functioning kids fall through the cracks, even today. I’m sorry it took him so long to get a diagnosis and find the right coping tools, but am glad he finally found them :).

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    2. Debbie, my daughter has similar issues with aggressive behaviours and outbursts. She has had a diagnosis of ADHD since she was 5 yrs old and Autism since she was about 7 yrs old. Despite this, we still have problems with people understanding why she behaves the way she does, espeically school staff. Most people just don't get it, nor do they want to try. I, as a parent, am viewed as the problem all the time.

      I'm glad your son is doing better now. It gives me hope that with time and maturity, my daughter may hopefully improve as well!

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  18. Look at that face. What a sweet little boy. Erika, you rock. You are a great Mom! I have so many things going through my head, but I think the first 4 short sentences say it all. Ranee (MN)

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  19. Erika, when I read the headline of this post, my heart just bled for you. I wondered if it was written in response to a recent comment by a judgemental poster and it just didn't seem right that you felt like you had to explain to us readers why you must choose the foods you do for your son. Really, it's none of our business why you do what you do. If her comment was a catalyst as to why you wrote this post, I'm sorry you felt like you had to justify your actions. Anyone who follows your blog can tell that you love your family and would do anything for them!! Please don't let the careless comments of a few people shake your identity. You work so hard to make life for your family as pleasant and healthy as you can. You're a tough lady, a hard worker and obviously a caring and loving Mom and wife.

    It's unfortunate, that some people will always manage to criticize, no matter what you do. It seems to me though, that the majority of your posters are decent, kind people who seem to respect you and think how you manage your life is rather amazing. If you can shake off the negativity of your critics, do so. Just keep moving forward with your head held high! You rock.

    Pat, Canada

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    1. Aw! I appreciate the sentiment, Pat, I truly do :). Honestly, though, it was the e-mail I recieved that made me write this in the hope that maybe I could give some hope to those parents who are deep in the front lines of feeding issues with their kid, desperately worried their child might starve to death. The battles are hard, but worth it in the end and I am hoping that I might inspire one person to just keep moving forward and things might work out okay in the end.

      Criticism I am used to, honestly. When you have a special needs kid, you get a thick skin to snide comments or just general criticism on how you do pretty much everything. I used to take it personally and get upset, but over time I’ve learned to roll with it. And trust me I know how great you all are out there and I am very grateful to have you all read my blog :). Thank you!

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  20. Cute picture! Thank you so much for sharing your life in your blog. I confess that I was curious about why you gave your son French fries and coke when it's so well known that a kids diet has a massive effect on their behaviour. This post has been a real education for me. Good luck for your goals for this year x
    Love to you and your family, Annabel (England)

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  21. I may make this blog post required reading for my students. Heartfelt, honest, and a reminder that we, as professionals, don't always have the answers. We do try, though ... to understand and help. I wish I could make it a requirement for folks who haven't walked in your shoes or who think that one child with a disability is the same as another child with a disability. When you've met one mom, one child with autism, known one family ... then you've met one mom, one child with autism, known one family! That's it. XXXOOO

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  22. I think your last two sentences sum it all up really well. It's obvious that you love your children and really do the best that you can. I have a great nephew who is autistic so I know a little of what you deal with on a daily basis. Good luck to all of you - and remember to look after yourself as well.

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  23. Erika - you and hubby sure made some good looking kids! :)
    I myself have food issues - I tell people it isn't the taste (well - except for coconut and banana) - it's how it feels in my mouth - for example, fresh green or wax beans are fuzzy even when cooked!! I also have a long list of food intolerance's. Of me and my 3 siblings, 3 of us have bi-polar disorder and all of us have OCD and probable ADHD. My youngest brother is the worst - he knows certain foods make him sick (ulcerative colitis + IBS) but he will still buy it and then proceed to eat it all. When he eats pretzels, they must be in a certain bowl and stacked in 3's before he puts them in his mouth - and he knows he is doing it but can't not do it! My daughter and I both will divide things like granola, snack mixes or Skittles candies into like groups to eat....when we had our daughter observed in 3rd grade, the psychologist told us "she just marches to the beat of a different drum" and therefore, she didn't get any extra help.
    I pray Alvah continues to improve and will someday be able to communicate more and eat more foods and you can tweak his meds as needed to keep the repetitive behaviors to a minimum. It is obvious you want what is best for him - keep it up - you are in the trenches and doing it right!
    Melissa V

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  24. This post really touched me, Erika. I think you and your husband are doing a great job with your kiddos. It must be so scary to worry over whether or not your child will eat. Most of us can't even imagine that. I appreciate the insight gained from this information. God bless you all! And, I have to agree with many other readers that Alvah is adorable.

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  25. When my son was was a baby he screamed 18-20 hours a day and rarely slept more than two hours a day. He had a terrible time with breast feeding due to an undiagnosed tongue tie. He had lots more struggles with food once my milk dried up at four months. When he was a little bigger, he had serious struggles with food, self-harm, aggression, etc.
    People would tell me how “normal” he was and that if I just did A, B, or C, he would be fine. None of those things made it fine. I completely understand your perspective and some of your fears.
    I do believe it will get better.
    I also know God picked you to be his mom, and you are “killing” it. Well done. Take care.

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  26. Erika, thank you for sharing your heart with the world. It is so difficult to bare your soul. There are many who do not understand and think they are helping with their criticisms. They are not. Cruel criticisms are the reason I now moderate the comments on my blog. My heart aches but I have learned to use the delete button.

    You have touched many people with your life, encouraged those who are struggling, and cheered many who discouraged. You make me cry and smile. Thank you for being you.

    Jeannie @ GetMeToTheCountry

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  27. The day someone develops a children’s vitamin with no taste and color that we could put in milk or soda, is the day they’d become a billionaire. I’ve followed you for a long time and I know you’ve done the best for him. Don’t feel bad at all.

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  28. I just read this today. Well said!

    As you know, I have an autistic niece, and a special needs nephew. I also have several special needs kids of my own, that we have adopted, but they don't struggle with the same food issues--they have other things going on. My nephew has a short list of foods he will eat, but my niece is the one who struggles the most. She was starving herself to death as an infant. (As you know, that is not an exaggeration). So, in desperation, my sister started feeding her anything she would eat, as few as those items are. Whatever they were. They did years of therapy.

    She is 20 now, and is spending the weekend with me. That right there is a miracle--that she would stay here for 2 nights. She simply doesn't want to leave home. I bought the Danimals Strawberry explosion yogurt drinks. I bought the red delicious apples (that she ate 4 bites of, but that's a lot for her). The crunchy peanut butter. The ciabatta bread. The 100% whole wheat bread. (A real triumph that she settled on that as a preferred food). The wrong ice cream bars. The wrong brand of peanut butter. The chips. The milk. She's lived on it all weekend, and we are both happy. With her, price doesn't matter. Quality of food doesn't matter. Getting her to eat matters. I get it.

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