Food Allergies, Speech Delay & Autism – Oh My!

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!]

Econ-Mom’s Comments:

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.

Is a “Mom on 11” and a “Default Parent” the Same Thing?

Dear Friends:

Yes, you, too, might be a “Mom on 11.” How do you know if you are one?

You do too d*** much.

Now, one might argue that all mothers are, by their very nature, “Moms on 11.” (Although, I’m sure we can all think of some people who do not win this excellent award/title.) But, if you are the default parent, have a Type A personality, and/or are a WAH-Pinterest Mom, then you very likely may be a Mom on 11, too.

I acquired the Mom on 11 title from my beloved husband (The Hub, who loves “Spinal Tap”). He thinks that I try to be and do too much for my kids. I have fought him for a long time on this irritating label, because, I actually like to consider myself the opposite of a Mom on 11, who has taught her kids how to pack their lunches and do their homework without prompting – by not doing it for them.

But, I suppose, if I am forced to be honest with myself, I deserve the “Mom on 11” title by virtue of what my days look like. I mean, if you’re working at your computer from 5:30 am to 6:30 pm with nary a break, you work hard. You work a lot. And when you are not working, you are usually toiling away at unpaid domestic labor. We all know the drill: laundry, dishes, dinner. Laundry, dishes, dinner. Laundry, dishes, dinner. It’s an exhausting hamster wheel of thanklessness.

A lot has been written about a woman’s (usually mothers’) mental load, or emotional labor.

I can’t say this mental load imbalance looks a lot different in our home, but I have a few points:

(1) I have two daughters. So, I cannot raise boys who will not repeat the well-worn-out cycle of male-domestic-cluelessness. Moms of boys (Econ-mom): You need to do this for the sake of my daughters. I thank you in advance for your service.

(2) Some of it is my fault. From the get-go, I was so determined to be the “best mom ever” (ergo, “Mom on 11” title) that I took on a lot of the mental load tasks myself. And I wanted to. I mean, what mom doesn’t want to have fun shopping for girls’ clothes? Also, I “leaned away” for the first five years of parenting and only worked from home on a part-time basis, so I had time to attend to all the “default parent” tasks. [Topic for another day: Why moms, and not dads, quit their jobs to be at home with their kids. Biological? Cultural? Economic? Discuss.]

(3) The Hub is an amazing hub, who does more than the average male around the house. So, I am not complaining. But I do manage many, many tasks that I don’t think ever cross his mind. But am I wrong about that? And should I just be delegating more?

I have linked a lot of articles to respond to here, Econ-mom. I look forward to hearing what you have to say.

Econ-mom’s response:

Well, there is a lot to discuss here!  First of all, on the topic of raising boys to break this cycle – I have a lot to say about raising boys in general, because this topic has been in the news a lot lately.  Just yesterday I read this article in which Michelle Obama says: “The problem is we love our boys and we raise our girls.”  I am a big fan of Michelle Obama, and I’m sure there is some truth in this statement, but I, of course, take issue with it on a personal level. However I think this is a topic for another post.  For now I will say this – IF I am lucky enough to get a job soon (I am in the process of submitting job applications now, wish me luck!) then our family will soon undergo a role reversal, and my boys will grow up in a house where their father is in charge of the morning routine, shopping, cleaning, you name it. (By the way, I am terrified at the mere idea of this change, but I do think that living this example for the boys would be one of the best ways to break that cycle.)

In our house, I – of course – became the default parent. This is largely because I’m not the one earning money, but it also had a lot to do with the very early differences in the amount of time we each spent parenting.  Interestingly, I do feel like DH (dear husband) and I started out on very equal footing.  Which is to say we were both completely clueless when it came to parenting.  I swear to you, when we brought our son home from the hospital we did not own a package of wipes.  (Trust me, I remember this accurately.  If you have ever tried to clean up meconium without wipes, you would remember too.)  We laughed and cried and tried to learn everything together, as an equal partnership.  That lasted for about 10 days, and then DH left for a work trip for over three weeks.  Needless to say by the time he returned, I was the parenting ‘expert’.  And the difference in skill level only continued to snowball from there.  Once one person is better at changing diapers, for example, it’s easier for that person to just do it, rather than force the weaker parent to catch up, so to speak.

Now, our case was a bit extreme, and it was 100% our fault, since we made the decision to try for a baby knowing what DH’s work schedule would be.  However, part of why we were foolish enough to have a baby so close to his work trip was because of the message sent to us by society.  How much paternity leave do most men take? According to this article, the median amount is ONE WEEK. Clearly this is a huge part of the problem, and MEN need to be the ones pushing for this to change. Men need to be brave and trust that if they push for flexible work policies, as their female counterparts have been doing for DECADES, they will not get fired. Okay, I can’t actually promise that they won’t get fired, but I can promise that this fight is worth fighting. Men should want this. It’s baffling to me how rarely you see men come forward and say, “Actually, we’ve never ‘had it all,’ because so many of us have worked our butts off to make it to the C-suite and sacrificed our relationships with our children, and it wasn’t worth it.”

Law-mom’s response: All great points, EM! Yes, we will have to discuss some of the finer points buried in this week’s post in the future. Thank you for tackling so much here!

Mom on 11, Exhibit A: The Mom Who Wants to Make Every Second With Her Kids Count

In a series of blog posts, we will be exploring what it means to be a “Mom on 11.”  In addition to creating our own content, we will frequently link to articles that inspire – or terrify – us.

The winner of this week’s “Mom on 11 Award” goes to this blogger. The linked blog post was sent to Law-Mom by one of her dearest friends. This, however, was her reaction to it:

“O.M.G. I have to spend every single second with my kids! I have to plan big and small things! I have to afford vacation! But I can’t afford vacation if I don’t work. But if I work, I can’t spend every single second with my kids! And, [bleep!] I am never in any pictures! They will have zero memories of their mom….”

Don’t get me wrong: I understand where this woman is coming from. Yes, our children’s childhoods are short, and it is a beautiful thing to savor every moment of them – as best we can. But, this idea that we have to do all and be all for our kids is pressure, people! pressure!

“I must [the very word itself gives me high blood pressure] make every single [there is no room for error] summer count.”

Econ-mom, can we talk about how feasible this is for working moms?

I have been wanting to say this for a long time: I personally find it cruel that we tell our daughters that they can be and do anything they want in life, but, once they become mothers, they need to hang up all their degrees and focus their entire being and psyche on their children. It is also cruel that we set up institutional roadblocks that make working outside the home nearly impossible for some people. (More on that later.)

For the record, I do pretty much focus my entire being and psyche on my children. In fact, I largely work for my children. I work, because we need my income to pay the bills and any of the “extras” considered necessary and proper by today’s middle-class standards. And by extras, I mean things like gymnastics lessons and private tutoring. Not vacation or a dream kitchen. (We will be discussing and exploring more about the economics of parenting in future blog posts.)

So, with that premise out of the way: How does a working mom “make every single summer count” and work?

Well?

Honestly, it cannot be done. You can do your best, but you will not be able to.

At this point, you can hyperventilate into a paper bag, like I did briefly after reading that blog. Or, you can just accept reality and pat yourself on the back for packing the kids’ lunches today and move on.

But that blog post illustrates the sort of pressure on parents that “Mom on 11” culture creates.

Do you agree?

Econ-Mom’s response:

Oh my gosh, I have so much to say about this.  First, Law-mom, be glad that you are at least earning money for your family!  Throughout the past six years that I have been in graduate school, I have rarely brought home more money than we spent on child care.  (I know it’s an investment, yadda yadda, but that doesn’t stop me from feeling guilty when I’m writing those daycare checks!)

Second, I’m going to coin a term for this particular form of guilt – how about Extreme Savoring Syndrome (ESS) – for shorthand. I have felt the pressure of ESS often.  For example the old lady at the park who says, “I remember when my kids were that age! Treasure these moments!”  I mean, I get where these people (including the mom blogger you linked to) are coming from.  ALL of life is ephemeral, but for many reasons that transience is right in your face when you have young children.  Just when you get used to your little one saying “break-stist” instead of breakfast, he stops saying it.  And don’t even get me started on those families you only see once a year!  Their kids are completely different every time you see them and you’re like “WHAT JUST HAPPENED?!”  So, I get it.  BUT… it is guilt-inducing! It used to be that anytime I worked on a weekend this little voice in my head would be going “They’re only young for such a short time… “

Nowadays ESS doesn’t rear its ugly head for me as often as it used to.  But I used to worry about this a lot, and I finally started telling myself “you know what?  If you spend 16 waking hours per day with your kids instead of 8 waking hours per day, you’ll still miss their chubby little cheeks when they’re grown. But at least this way you will (hopefully!) have a career that you love in addition to some lovely grown-up offspring.”   Or as my dad says, “You can’t bottle it up, that’s for sure.”

Finally, I would like to add that, like many things, ESS can be especially difficult for special needs moms.  We’re not only trying to strike a balance between therapy sessions and letting our kids be kids, but we also often go through extremely rough patches with our children.  Many autistic children have major sleep problems and frequent intense melt-downs, which are emotionally draining for any parent or caregiver.  As special needs parents we also have to go through a period where we adjust our expectations for how we thought our child’s life was going to go (and trust me, if you thought you went into parenthood with “zero expectations” you would likely be surprised by how many subconscious expectations you had when forced to confront them).  We love our kids so fiercely, and there are always sweet and happy moments scattered through the darkest times, but frankly there are some times in my children’s lives that I did not savor.

In conclusion, I have no idea how to make each summer count!  Courtney, to respond to your point about vacation, trust me that is not the answer.  We went on a “vacation” to attend our family reunion this summer, and guess what?  I spent the whole time dealing with a bored 3-year-old and feeling extremely irritated that we bought four plane tickets just for me to not be able to talk to anybody! I think my official answer will be “when it’s really hot out let your kids eat a popsicle” and leave it at that.