Living with Food Allergies and Autism: Does Anyone Understand?

…When every moment seems an eternity and with every scream of pain it feels like your heart is being ripped from your chest and it happens again, and again, and again, and again, and again for moments, minutes, hours, days, nights, and months (even years) on end…

I know there are those of you who follow this blog for our personal news of Jordan, but this post is for those moms (and dads) out there who live with Food Allergies or Autism Spectrum Disorders everyday. I’m going to be real, so those of you who don’t live with this, if you read it, please don’t be offended, but instead, try to get a glimpse inside life with a child with these issues and see how you might help those who live with it daily.

I know for me there was one friend who stopped and listened – for hours. And although it was only the one time that we got to talk, to have someone stop, listen, truly understand and enter my world as best they could, not brush it off flippantly, or uncomfortably move on to a less loaded subject meant the world to me and it was so good for me to just be able to share the load with someone and to be understood. 

Tonight a friend of mine mentioned a friend of hers who is struggling with dealing with everything involved in having a child on the Autism Spectrum and feeling like no one understands. Although, my friend readily admitted she doesn’t understand, I immediately thought, “I’ve been there, and nobody does understand.” I felt so very alone for so long and things were so bad I didn’t feel like I could share with anyone 1. because they couldn’t understand anyway and what I had to say would seem rather dramatic, unbelievable, and quite possibly sound exaggerated (though actually would probably be understated) 2. it felt like I’d would just be compaining, whining and have an ”oh poor me” complex and 3. because if I did start to share, I wasn’t sure I’d ever stop, there was so much pain inside. And for me, I didn’t know it was Autism or anything related to it, so I’d say my child was allergic to food and had developmental delays and people just didn’t get the gravity of it. Once I learned that what we were dealing with was related to Autism, when I’d mention that to people, they’d say, “Oh, you think so? No, I don’t think so. He doesn’t seem that bad.” What they didn’t know what how many months I’d been working on things and how good he was finally doing (comparatively), and how I structured his day and our lives for an entire week so that we could have those few hours of decent behavior when they saw him.

The doctors had no answers and offered no help, direction, or hope and didn’t even seem to take me seriously. We live over 1100 miles away from any family or friends (we moved right after he was born). People didn’t get that him having food allergies (allergic to all food) meant that our diet was extremely complicated. I had to become doctor, nutritionist, cook (everything from scratch with ingredients I’d never heard of – 3 meals and 2 snacks/day), and researcher (to learn all this stuff and figure out how to help my child – and by help, I mean keep him from dying, since he was allergic to all food and I knew nursing him just wouldn’t cut it for the rest of his life) in addition to caregiver and normal mom stuff for him and my older son.

People didn’t get that having food allergies meant that he was vomiting; in constant pain which meant constant around the clock screaming, crying or fussing and would often bash his head into hard things like ceramic tile because of it (I’ve described this as sounding like someone dropping a bowling ball onto concrete) but he would just keep going repeatedly bashing his head and I couldn’t stop him no matter how many hundred times I’d pick him up to stop him, he’d go right back - he commonly had a bruised forehead; his bottom was often covered in a rash and he had anal fissures; he would writhe and thrash in pain so much that I couldn’t hold onto him. When he wasn’t writhing, thrashing, or bashing his head, he wanted to be held constantly. And by “wanted” I mean he demanded it – out of fear and pain. If I had to put him down, he would scream and cry endlessly until I picked him up again (even if it was hours) – I arranged my entire kitchen so I could cook and do everything one-handed. Holding him didn’t always mean that the crying would stop. Often, he would “ask” aka scream to be held, I’d pick him up and hold him, he would continue crying and whimpering while squirming so much I’d nearly drop him, so I’d set him down, he’d scream louder, I’d pick him up, he’d curl into a tight ball in my lap still whimpering, but after a few seconds would start squirming and writhing  and work his way down onto the floor, only to scream louder flop around miserably when he got there, and I’d pick him up…and repeat and repeat and repeat until I just wanted to scream for the sheer frustration of it, but then I’d think of how he was feeling and just want to cry, and sometimes I did.

He was miserable, never happy or content, and I felt his misery keenly. I knew he was in pain and couldn’t bear to make him go through it alone. I knew I couldn’t take his pain away, but I could hold him, soothe him, just be there for him providing security, love, and comfort to some degree just by my presence. Some nights (and days for that matter), I just sat there holding him and cried with him. Sometimes because I felt so bad for him and the pain he was in. Sometimes because I was so completely exhausted physically and emotionally. Sometimes because it seemed so hopeless and I didn’t know if it would ever end. Sometimes because I couldn’t stand his crying anymore, but knew he was in tremendous pain and I just couldn’t leave him to deal with it by himself or get angry at him for it, it wasn’t his fault, so I’d just cry with him. I did everything in my power to minimize his pain. I researched endlessly to learn about allergies and about their causes so I could work toward his healing, and I paid extremely close attention to my diet, since he was (and still is) nursing, (and later to his diet as well) and strictly kept out anything he was sensitive to through me. In the few hours that he would sleep at night, between wakings, I would either crash and sleep myself, or stay up – sometimes all night - and research.

In the midst of this we couldn’t leave the house – he couldn’t handle it and I had to cook 3 meals and 2 snacks per day (one-handed) anyway (and nurse him every 3-4 hours), hard to get out between those. We couldn’t socialize and make friends in the new area we’d moved to. Socialization most often revolves around food, and we couldn’t eat anything normal people eat. He was usually crying and fussing anyway, which isn’t the most fun to be around and trying to make conversation over that doesn’t work real well. Not to mention that it’s rather embarrassing and it can easily look like you have no control over your child and simply do not discipline at all. For the first 18 months, I didn’t know it was related to Autism at all, so I didn’t even have that as a way of quickly letting people know that he has some “issues”.

So, when someone says, “No one understands”. I know exactly where they are coming from. It’s the cumulative effect that really carries the heaping burden. A year and a half of severe sleep deprivation, no breaks (I couldn’t leave him for more than 2 hours at a time due to nursing) so even slipping out in the evening once my husband was home was difficult to impossible – I only did that once a month or so to get groceries and read all those ingredient lists. And the weight of the responsibility of caring for him plus trying to solve all the medical issues involved were tremendous, not to mention the occasional thoughts of what the long term future would hold for him (and us), if he didn’t get better.  Anne from Anne of Green Gables claimed to be in the “depths of despair” and I could relate. Words can’t begin to describe the depth, difficulty, and pain of it and the issues are so multi-faceted that even if it could be put into words, it would take hours just to communicate it to someone, should someone actually want to listen, should I actually be able to get away to talk. It is so extremely isolating and lonely and I felt like I was battling the world in order to save my son.

Now, I’ve rounded the bend and am on the hopeful stretch, knowing the medical issues involved, knowing the process of treatment and that there is an entire array of possibilities, knowing if one doesn’t work there are many other options, seeing improvements in Jordan, sleeping through the night – no longer chronically sleep deprived (at least, no more than any other mom), able to get out of the house and make some friends and now occationally meet up with friends I’ve made. Able to take the boys out during the day to a store or a park. It’s nice. It’s grand. The sheer joy of normality (or near normality) is pure ecstasy and I marvel at it and thank God for it on a daily basis.

REFLECTIONS

A few months ago, as I was just entering this hopeful stretch, I was pondering my time in the depths of despair and wondering about my being so low. I thought, hmm, if I’d just been able to keep an eternal perspective that “this too shall pass” that, “…we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” If I’d just been able to do that, then it would have made it so much better. But to be quite honest with myself, my next thoughts were, but this wasn’t really possible, ” renewed day by day? I’d hardly had a renewing moment since his birth. Every day I got more drained than the one before. Light and momentary… yes, I’m sure in view of eternity. But, it doesn’t seem it. It seems impossible to keep an eternal perspective when living in this. This verse seems like a lie.  When every moment seems an eternity and with every painful scream it feels like your heart is being ripped from your chest and it happens again, and again, and again, and again, and again for moments, minutes, hours, days, nights, months, and years on end. Each moment an eternity in itself.  No, no one understands who hasn’t been there. And when you are there, with all the screaming, thrashing, tantrums, frustrations, desperation, every moment of every day (and often every night), you don’t have time to stop, refocus, and gain eternal perspective. It all presses in too hard, too fast, constantly without pause.

So, forget eternal perspective as far as time, I had to take it hour by hour, often minute by minute – and each one seemed an eternity in itself. I had to focus on a God who is good and who loves me – and my child. I had to remember that even as I was cradling my baby in my arms, He had me in His arms, “He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young” – Isaiah 40:11 and Isaiah 41:13 “For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” Not that I had time to actually read these verses, but I knew them and could focus on the idea of them. And when it all got to be too much and physically my body broke down and quit on me, I prayed for “Jesus with skin on.”  Praying and trusting Him is great and necessary, don’t get me wrong, but when your body gives up and you simply cannot press on any further, you need help in the form of people and you need rest - and God provided both.

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