Let’s talk food allergies.
Now, I will be the first to admit that not all special needs are alike, and some special needs are much harder than others. I fully get that.
But having a child with food allergies is very hard. Multiply the allergies and you multiply the magnitude of the problem. When my eldest (lets call her SC1 for Sweet Child 1; my youngest will be SC2) was little, she had seven food allergies, two of which she has (gratefully) outgrown. But that means she still has five life-threatening allergies, which she will very likely live with for the rest of her life. (Trust me on this one. We have this opinion on good medical authority.)
I think this video does a pretty decent job of explaining what it is like to have a child with food allergies. Especially young children, who put everything in their mouths and cannot manage their allergies at all on their own. I definitely lived with high levels of anxiety about my daughter’s food allergies when she was very young. It made everything from preschool to playdates a challenge. Having one child with, and one without, food allergies, I can tell you how much easier it is to drop off the child who does not have allergies to a birthday party, or any other event that involves food. And they all involve food. For us, food is an omnipresent and ubiquitous danger.
Until SC1 was 4 or 5, she was allergic to sunflower. I invite you to go into your pantry and check out all the foods that contain sunflower. Especially if you are trying to eat organic (which we do), nearly every pre-packaged food will contain sunflower. Even raisins.
SC1 also has Oral Allergy Syndrome (OAS). Many people have OAS. This is when you eat a raw fruit or vegetable, and your mouth and/or throat starts to itch. This is a result of cross-pollination issues (thereby likely affecting those who are also allergic to the pollen in question) and is not life-threatening. It is not a real food allergy. But many people do not understand this and confuse the two. I personally believe this is why many people do not take true food allergies seriously.
When SC1 was little, any number of fresh fruits would give her OAS. Her reactions would mimic her true food allergy reactions. So, basically, when I dropped her off at preschool and playdates, I had to say: “Just give her water.” The unhealthier the snack — Oreos or Ritz Crackers — the more likely she could eat it, because it didn’t contain sunflower and it wasn’t a fresh fruit tricking her caretaker into thinking she was having a real food allergy reaction.
Think about what this would have been like trying to manage if I had been working full time. (Back then, I worked part-time from home.)
SC1 was also in speech therapy three times a week through her preschool years. And then SC2 joined her a couple years later. So, at one point, I as driving them to speech therapy six times a week.
(A moment of silence to let that sink in.)
My point about the speech therapy circles back to parenting special needs children and trying to work a full-time job. (Econ-mom, I know you get this.)
Before our school district implemented a food-allergy friendly policy (no food in classrooms), I had to take a day off of work every time SC1’s Kindergarten class had a class party. Because you can’t expect four room parents (room moms, really; let’s get real), and the teacher who has 22+ other charges, to understand all the ins-and-outs of your child’s very complicated food allergy issues. (“No, she can’t eat raisins, because they might have sunflower. She can have apples, but don’t freak out when she complains that her throat is itching. No, she really can’t have most chocolate, because it might contain nuts. Watch out for pea protein. It sneaks into anything that is gluten free.”)
Last point about managing food allergies: Just because we (food allergy moms) are reading every label, or staying at your child’s birthday party when all the other parents are just dropping off their child, does not mean we are a helicopter parent. In fact, we really, really hate having to act like a helicopter parent. (That linked article is one of my favorites. Just read that. I didn’t need to write this post.) We are just trying to protect our child’s life, is all. You know, basic stuff. We are also trying to save you the headache of figuring out what to do when our kid breaks out in hives and starts vomiting.
SC1 has had two very severe allergic reactions thus far where the epipen probably should have been used. [I am going to find and link a blog post I once read by a very sympathetic mom who also failed to use the epipen when she probably should have — if I can find it. Also, a post for another day: How much epipens cost, the fact that ambulances are not even required to carry them, and how much they fail.] I can think of six other incidents that were thankfully less severe (two of which were her “first time” reactions to sesame and eggs that sent us to the allergist in the first place).
The point is: Even I have made mistakes, and I am all too familiar with how allergens can sneak into foods that you would not expect. (Did you know fish sticks can contain pea protein? Candy corn has sesame?) So, please do not judge me when you see me reading the label on the fake cheese sauce. Even if she has eaten it before, ingredients can change over time. Sesame oil is cheap, which is why it is used in so many foods.
I guess my overall point here is: Working full-time and parenting kids with special needs is hard. For some, it is impossible. What is the solution? Is there one?
[I didn’t even talk about the implications of food allergies on Halloween – my least favorite holiday that we just survived! Also a blog post for another day!]
This is a timely post from Law-mom (LM), because I was just thinking about how nice it would be if “autism leave” was a thing. I’m not sure how helpful this would be for food allergies since, as LM points out, that is a problem that requires constant vigilance. Autism, on the other hand, does get easier over time in some ways. There is a huge learning curve that you have to deal with post-diagnosis. You have to get various therapies set up (which involves reams of paperwork, scheduling an evaluation, and then often hanging out on a waiting list). You have to find a way to work these into your schedule (Ha!), because even if you could afford a nanny you will want to attend most of the sessions, so you can learn how to work on the various skills in your “free time.” It’s no wonder many moms scale back or quit working altogether if they have an autistic child. [This is true for speech therapy, too, Econ-mom (EM). Our private speech therapist wanted me to attend all the sessions.]
I was 3 years into my PhD when we got Tuffy’s (my 6 year old’s) diagnosis. I was told he would need 20+ hours of therapy per week. I thought very hard about quitting school, but to make a long story short, I hung on by the skin of my teeth. One way I was able to do this was by lining up Tuffy’s speech, occupational therapy, and ABA (applied behavioral analysis) sessions on Wednesdays. (He also had ABA on Fridays, but often DH would attend that session). He also attended developmental preschool 4 days a week, but the school district was able to bus him from preschool to his daycare. This way, I was able to work 4 days a week, but it took almost 6 months to get this schedule nailed down. Initially we didn’t have busing, so I had to drop him off at preschool, run to a coffee shop nearby and work for about 1.5 hours, and then run back and pick him up. As LM said about driving to speech therapy, there’s no way I could have done this if I had had a “real” job. I suppose I could have hired a driver/nanny if I had had a real job, i.e. one where I actually earned more than the cost of daycare. Then again, if I had had a real job prior to Tuffy’s diagnosis, I’m sure I would have lost it already due to his frequent illness. (There is some recent research linking autism and the immune system and I for one am inclined to believe it.)
Anyway, having some kind of standard 6-month autism leave after getting a new diagnosis wouldn’t solve everything. For example, my heart goes out to this mom who decided to quit work when her son was 8 (so presumably had the diagnosis for a while). However, at the very least, it would send a message that we as a society want to support these parents and make them feel welcome in the work place if they choose/are able to stay in.
And one last comment about helicopter parenting – it’s funny how Courtney and I have both found ourselves in that situation, but for very different reasons. Autism parents end up being helicopter parents all the time, due to our children’s limited ability to communicate. It’s not a role most of us relish, but it is what it is. For me anyway, it took some time to get used to that role, but nowadays I’m pretty comfortable inserting myself into my children’s play on the playground, and I am just grateful that the kids are still young enough that I’m not getting the “Why is your mom here?” type of comments, yet.