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Our Auto Show “Adventure”

Econ-Mom: Today we made Family Mistake #5782 and decided (er, DH convinced me) to drive to the LA auto show.  You’re probably already laughing at me (or just shaking your head) but in case you’re wondering why this was a giant mistake:

  1. LA is a 2 hour drive away;
  2. My younger son has pretty significant sensory issues; and
  3. The auto show is extremely crowded.

After getting on the road late, stopping to play at a rest stop, and a trip to a Jack in the Box (with a very disgusting bathroom) , we finally found a $20 parking place that was pretty close to the auto show.

Outside the convention center we saw people doing some stunt driving, which I thought was kind of cool, but Peanut immediately started scream-crying because he “wanted to go inside.”  Of course, the entrance was still a little hike, and Peanut refused to use the stroller we brought (apparently he’s too big for the stroller now). While Peanut was wanting to be carried, Tuffy ran ahead and almost plowed into a few people.  So, I yelled something like “Tuffy get over here!” and then he started crying.  (He’s going through a super sensitive phase lately, I think partly because second grade has been hard for him.  So it’s not uncommon for him to cry if I raise my voice, which is something I am really trying to work on!)

Now both kids have gotten upset, and we’re not even inside yet. But once we got in the door, they were excited to sit in the cars.  Peanut especially loved to sit in the driver’s seat and push all the buttons. (I’m 50% sure he broke something during the short time we were there — just the stress of him touching all of these expensive things was enough to make the whole trip not worth it.) The environment was definitely overstimulating, and Peanut kept bolting away from us, so one adult would chase him down.  Luckily our cell phones worked in there because we got separated a lot. Tuffy was handling things okay at first but then started to get upset because he kept getting electric shocks every time he touched a car.  (Things you learn about your kids — apparently Tuffy really hates electric shocks!)

So, Tuffy is in tears again, and Peanut is literally getting bowled over by adults because it’s a mad house, and no one is paying attention to where they’re going. Since everyone was getting agitated, I suggested getting some food. But by this point I was already pretty fed-up, so when the kids started whining about how long the food line was I said, “That’s it, we’re leaving,” and we all marched back to the car.  Clearly, we all had just needed a nap because all of us (except DH thankfully) fell asleep on the way home!

In hindsight, the thing that makes these situations worse is that I’m not only getting irritated from dealing with the behaviors from the children, but I’m amplifying my distress by getting mad at myself for making the poor choice (or in this case letting DH talk me into the poor choice) to bring the kids somewhere that’s a sensory nightmare. I’m not sure why I never learn this lesson!! Only last month I made the mistake of bringing the kids to a hockey game.  Why? Well, selfishly, I wanted to go to a work social event. They’re usually happy hours which aren’t family friendly, so when my work organized a group hockey game outing, I thought we could join.  WRONG. (This was actually a way bigger mistake than the auto show – the hockey game was incredibly loud and both kids were in tears by the end of the first period so we had to leave.)

You would just think that I would stop making the same mistakes over and over again!! It’s so frustrating. However, I’m trying to re-frame this in my mind and think of it like this – you know what, we are perhaps a slightly crazy family, but we’re also an adventurous family.  DH and I always used to do tons of road trips, and we loved trying new things before kids, so we are going to keep trying to expose our kids to new experiences, too.  Sometimes those experiences are going to really suck. But it’s not necessarily bad for the boys to try new things and have the occasional rough experience out there in the world.  A lot of places in the world are a sensory nightmare, unfortunately, but the kids do better and better as they get older – and we are *trying* to get Peanut started with OT which will hopefully help (of course the intake process at our HMO has been long and drawn out but that’s another story!)

Law-Mom: I give you so much credit that you keep trying, Econ-Mom. I know it is/can be so hard. We were not adventuresome when the kids were young because, seriously, every outing just felt like one giant headache, such that it was “so not worth it.” (Eating out at restaurants with the allergy issues still feels that way. I get jealous every time I hear about someone going out to eat.) It is a struggle, finding that balance between activities that you are good for your kids and a stretch for them, while also maintaining your own sanity.

Truth be told, I feel like I have sensory issues, so I really appreciate it when you say that the world is a sensory nightmare. Because I feel like it is.  I really *cannot* stand noise. (Ergo, I am not a fan of large parties.) It drives The Hub crazy how much I hate his loud music. I shut myself up in our bedroom the other day because he had the music too loud, but he was making dinner so I didn’t want to force him to turn it down. Today, I went on a field trip with a group of third graders, and I am still reeling from the experience of all the noise.  (I feel dizzy and exhausted.) Crowds and noise are just a nightmare for me. So, I avoid them. When I take my kids places that are super crowded, it is that much worse for me because I am absorbing literally everything from them and from the crowd around me.  The older I get, the more sensitive I get (I think). So, I have a lot of empathy for children with sensory issues. And their parents! Because as sensitive as I am, I can *handle* it. I may not like it. But I don’t throw myself down in the middle of a store and throw tantrums (as SC1 used to do). I save that for when I get home. (JK.)

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How an Autism Diagnosis Should Go

[Editor’s Note: We cannot explain why there are no spaces between paragraphs in this blog post. The formatting is inexplicably not working properly.]
Okay, this is a long post, but now that I consider myself a veteran autism parent, I have a few ideas to share about how the world could be a better place for autistic people and their families.
The journey to getting my son’s autism diagnosis was hard, for two main reasons. (And I think many people have a similarly difficult time, though of course everyone’s experience is different!) First, I was coming to terms with the fact that my child is “atypical.”. When I had my son, I started reading those Baby Center newsletters.  They always discuss milestones and then say, “But don’t worry, every kid is different! Never compare your child to another child.”  Then all of a sudden, as you start down the path to the diagnosis, everyone is saying, “Well actually, your child is too different. He doesn’t talk enough or say the right things. It’s wrong that he likes to play with the same toy for 30 minutes. It’s wrong that he doesn’t do pretend play. It’s wrong that he doesn’t look at people.” (To be fair, no one used the word “wrong.”. But just by the fact that your child is being diagnosed with a “disorder” it’s hard to avoid the implication that the behavior is wrong.) I felt sad and guilty for not realizing earlier how “wrong” my child’s behavior had been, but at the same time angry at all these “experts” who didn’t have a single good thing to say about my beautiful, intelligent, amazing child.  No one cared that he could take any set of objects (e.g. a bunch of pencils) and form them into the shapes of letters.  No one liked the way he played – drawing letters over and over in the sand with a stick is “wrong,” but building a sand castle is OK.  Learning the sign language alphabet was an “unusual hobby.”  (Of course now, in hindsight, I can certainly agree that that was a somewhat unusual hobby.  But when that came up during our diagnosis I bristled because I felt that the word “unusual” did not literally mean “not usual” but in fact “bad.”
Second, my husband and I essentially had a ton of extra work dumped in our laps.  Speech therapy, occupational therapy, ABA, developmental preschool.  There were assessments and SO MUCH PAPERWORK for each of those things. And “homework.”  The speech therapist would say “work on XYZ” and the OT would say “have him practice XYZ” etc., and I felt like I could never fit it all in, not to mention that it was stuff that my son didn’t *want* to practice. Oh, and by the way, I had a newborn baby! And given that half of his childhood was being taken up by therapy, I didn’t want everything for him to be work, work, work all the time.  I tried to tell myself that letting him line up letters for 30 minutes was not a *wasted* half hour, that was just him being a kid and playing how he plays, but I was never quite sure if I was doing the right thing! (For the record, we are four years post-diagnosis and Tuffy is doing incredibly well with making friends, keeping up at school, and just being amazingly well-behaved to the point that people who meet him now literally don’t believe me when I tell them about his meltdowns, so clearly I did execute everything perfectly despite all my fears! Or just maybe, autistic kids are super resilient just like all kids. But I definitely had some part in it!)
Given how hard the diagnosis process and early post-diagnosis months are, how could it be better?  How should this process go?  I believe that some of the first steps should be about supporting the parent(s).  For one thing, many autistic children do NOT sleep well, so not only do the parents have to deal with the issues I just described but they’re doing it on very little sleep.  It is SO HARD to do anything other than just survive when you’re not getting even close to enough sleep (and the sleep you do get is fragmented!).  It takes energy to work on goals with your child, especially behavioral goals.  Not to mention the fact that you’re also probably emotionally exhausted if your child has big meltdowns.  It’s just hard when someone regularly screams at you (and in some cases physically attacks you – my son didn’t do this but I hear this from a lot of autism parents).  It doesn’t matter that the person is a small child and you know not to “take it personally.” It is still just hard.  So you spend a lot of energy walking on eggshells to avoid the meltdowns.  For example, Tuffy used to have a very strict routine around opening his yogurt in the morning.  If my husband started opening the yogurt (not permissible – Tuffy had to open it himself) I’d dive across the room in slow motion yelling “Nooooooooo.”  (I didn’t really do this, but you get my point.) And God forbid the lid ripped while Tuffy was opening it, because if we couldn’t get every visible molecule of foil off of the plastic yogurt cup, the scream-fest was about to begin.  (By the way, if you’re reading this and thinking that we were just coddling him with his yogurt whims, please, please believe me that that is not how autism works.)
So, after years of raising an autistic child that you didn’t realize was autistic, sleepless nights, endless paperwork, judge-y stares and comments from parents or others who don’t get why you won’t take your child to the grocery store, why you can’t get him to wear his coat, etc., you finally get to the diagnosis, at which point things are supposed to get better.  But what actually happens is that you get to hear a whole bunch of stuff about how earlier diagnosis is better and then feel guilty for getting your child diagnosed “too late,” even though you probably had multiple doctors dismiss your early concerns anyway! (Of course, it’s more and more common for kids to get diagnosed quite early, but in our case Tuffy was over 3 and I got to hear a non-stop stream of praise for “birth to 3” intervention and how AMAZING it is if you can start services in that “critical window of brain development.”) Then you’re given a list of ABA providers that are covered by your insurance (if you’re lucky) and sent on your way! Never mind that most of those providers have long waiting lists so that critical time is ticking away as you frantically sign up for waiting lists as fast as you can fill out 30-page intake packets!
Here’s what should happen.  First, support from other parents is SO CRITICAL.  One of the first things I asked after we got Tuffy’s diagnosis was, “Is there a support group?” and the psychiatrist said, “Oh, I think XYZ has one.” So, I looked online and found that that group is only for people who receive their diagnosis through XYZ (which we didn’t.)  This is just ridiculous. Providers don’t necessarily need to facilitate these kind of groups, but it should absolutely be part of their job to know as much as possible about what supports are out there (including stuff like local Facebook groups!) to educate parents. Autism is not just a medical issue, it is a life issue.  There is SO MUCH that you cannot learn from therapists and doctors (unless they happen to have autistic children themselves!)  I mean, just imagine raising a neurotypical child with only the information you get from your pediatrician. Never having a mom-friend or family member who is also in the midst of raising a neurotypical child, who you call and say, “Hey, he won’t take the bottle,” or “Do you let your kid nap in the car?” or just commiserate about anything and everything! You probably won’t come into an autism diagnosis knowing that some parents do a TON of ABA and some choose not to do any.  You won’t know that you’re not the only parent who plans their day around not using public bathrooms, because your child can’t handle the noises from the hand dryers, or that you’re not the only parents who has lost your child and that some parents get GPS trackers for their kids. You won’t know what places are good for autistic kids to take swimming lessons. You only know what providers are telling you, and let’s face it – they are almost all wonderful, caring, hard-working people, but they don’t live autism 24/7. (Sorry for being super cynical, and I’m not directing this at anyone personally, but on some level I do believe that the fact that they are also trying to stay in business shapes their views on therapy to some extent.)
Second, the parents should go to at least one session with a therapist who specializes in autism.  Let’s face it, no two people on earth have the *exact* same ideas about parenting, but it gets compounded when you start throwing in all these interventions.  Some parents are more “pro-therapy” than others. Some are more skeptical about autism than others. Most are struggling with some level of grief as they figure out how to revise the (often subconscious) expectations they had had for how their child’s life was going to go. (Not to mention revising expectations about how our careers would go and weighing whether or not to quit our jobs and/or give up on other ambitions! Ahem, this was me.) This stuff is hard, and getting the parents to a place where they can be united would probably do at least as much for the child than many hours of therapy!
Finally, sleep issues need to be HIGH priority. We didn’t start Tuffy on melatonin right away because providers were pretty wishy-washy about it.  I wish they had made it more clear that it’s not harmful to try and that it’s worth trying if your child has trouble sleeping, because getting more sleep is really, really good for your child and yourself. You need extra patience to raise an autistic child, and patience is so hard to come by when you’re sleep deprived.  By the way, your child needs sleep, too! I believe that starting melatonin improved Tuffy’s behavior more than any therapy we did.
One last thing – before all of this, newly diagnosed parents should just get a spa day to rejuvenate for the work ahead!  ; )  I’m not sure our health insurance system can cover that, but if you have a friend whose child gets a diagnosis and you are able to pamper them a little bit, please do! It’s going to be an emotional time no matter what, but if society’s reaction was to celebrate the fact that the parent had put a lot of time and effort into getting that diagnosis and was really invested in learning and doing what’s best for their child, I think that would be cool.
Law-Mom: 
Econ-Mom, my heart really goes out to you hearing all of this.  I know that SC1 is not autistic, but between severe speech delay, poor speech articulation, daily temper tantrums, sensory processing issues, seven severe food allergies, and 5 hours of chopped up sleep per night while also taking care of a newborn, I really do appreciate how hard it can be.  (I was so sleep-deprived that I was on high blood pressure medication for about a year after having severe preeclampsia with SC2.)
I was constantly asking specialists if SC1 was on the autism spectrum and constantly being told she was not (basically because she made eye-contact). But there is also this really difficult parenting-space to exist in when your child is not developing the way you expect (based on the development you see in her peers), but you also can’t get a clear diagnosis. (We only finally got some answers after a neuropsych evaluation in third grade.)
If it had been any harder, I would have needed a support group. So, I 100% agree that specialists and providers should be offering and providing that kind of information to parents struggling to get through the maze and the days (daze) of parenting special needs children. In the end, I survived because I made friends with a mom in my neighborhood who had a child on the autism spectrum, and she and I could relate to each other’s struggles.
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The Special Ed Coverage Gap

I had an IEP (individual education plan) meeting for my younger son, Peanut, today, and it did not go well. After up-ending our schedules to bring him into the district’s special ed preschool for SIX DAYS (note: DH did 5 of these days so I have to give him a big shout out for pulling much more of this weight while I’m still very new at my job), the conclusion was basically that Peanut has some things he needs to work on, but he’s not eligible for special education services.

Apparently, he was a little angel during these six days, which is usually what you want to hear about your child, but not in this case!  So, I asked about putting him in our local developmental preschool (there is one at the school my older son attends) as a typical peer, and they said, “Well, the typical peers need to be really good role models.”  So, he’s too disabled to be a typical peer, but not disabled enough to be in special ed.  Great. Thanks for nothing public school system!

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Allow Me to Edit This Ableist Article

Let me preface this by saying that I don’t doubt for a second that this teacher had to deal with some rude students and parents. And I’ll give her the benefit of the doubt and assume that she was working hard to accommodate any special needs students that she had in her class.  The problem I have with articles like these is that they perpetuate the idea that behavior is 100% under the control of the child and that bad behavior is the fault of the parents. These ideas are so subtly woven through SO MANY articles, comments people make, etc.  We’re so used to them we don’t even notice.  But they’re so harmful to  autistic children and their families.  The idea that bad behavior can be “beaten out” (metaphorically or literally) of a child is a) crappy and can lead to abuse, b) can cause a delay in seeking a diagnosis, and c) when an autism/sensory processing/other diagnosis is made it can result in people, even within the immediate family, who don’t believe the diagnosis and not only undermine therapies but shame the parents with comments like “he just needs a good spanking.”

So without further ado, here is the article in question. I copy/pasted some sections below with my edits in red.

http://www.distractify.com/trending/2018/04/04/Z1TQtcz/facebook-rant-enabler-parent

One of the earliest things my mom taught me and my siblings growing up whenever we went anywhere was that we should treat that place like our own home. If we were playing with someone else’s toys, we should treat it like it was our own property. That, coupled with the fact that we ARE NEUROTYPICAL and didn’t grow up as the family who always had all of the newest toys and gadgets, meant that we had a respect for our own belongings, and coincidentally a respect for other people’s because our mom stayed on top of us. Also, being neurotypical, we were intrinsically motivated by social rewards, such as not having other people get mad at us. Now it might seem like such a simple concept for someone to grasp, but we’ve all met those kids who are basically a walking tornado. They leave mayhem in their wake, wherever they roam. Now you can scold the child and ask them just who the heck they think they are, or if they’re a toddler, just chalk it up to the fact that they’re going through the Satan Spawn phase of their life. Alternatively, some children get distressed easily in situations where there is a lot of visual and/or aural stimulation. These children sometimes use behavior to communicate the fact that they are anxious or even physically hurting if they are non-verbal or too overwhelmed to use words. Luckily, if these children are fortunate enough to have someone around them who understands this form of communication the situation can usually be deescalated fairly quickly. But if they’re old enough to know better and still see no problem with their behavior, then that responsibility falls squarely on the parent’s shoulders. I mean, yes, kids can be influenced by their friends and what they see on TV, but ultimately parents should be in control of that. So I get where this teacher is coming from with her epic rant on parents who “enable” kids’ bad behavior.

….

I am including photos that I took in my classroom over the past two days. This is how my classroom regularly looks after my students spend all day there. Keep in mind that many of the items damaged or destroyed by my students are my personal possessions or I purchased myself, because I have NO classroom budget. Luckily I understand that school is a very challenging environment for some children. Between the academics and just trying to behave all day, it can be hard for any kid but especially those who have to work harder than their peers to understand the reading or math and/or just to process the world around them. Therefore, I proactively plan for challenging behaviors and I would never fill my classroom with expensive and/or breakable items. I spend time trying to figure out what is causing the challenging behavior and I also advocate for more support for my students who need it, such as having an aide in the classroom.  It is a lot of extra work but all students are legally entitled to a public education, so we would never try to push a student out of the system because he/she is “too diffficult.” However, in some cases the lack of parental and adminstrative support really does make it very difficult for me to do my job. I have finally had enough of the disregard for personal and school property and am drawing a line in the sand on a myriad of behaviors that I am through tolerating. Unfortunately, one parent today thought it was wrong of me to hold her son accountable for his behavior and decided to very rudely tell me so, in front of her son.

…

I have never heard of a profession where people put so much of their heart and soul into their job, taking time and resources from their home and family, and getting paid such an insultingly measly amount. Teachers are some of the most kind and giving people I have ever met, yet they get treated so disrespectfully from all sides. Most Some parents can’t stand to spend more than a couple hours a day with their kid, (but by the way, many parents spend countless hours taking their child to therapy and advocating for him/her at IEP meetings, only to get constant push-back, because the supports needed for their child to be in an inclusive educational environment are “too expensive”) but we spend 8 with yours and 140 others just like him. Is it too much to ask for a little common courtesy and civil conversation? 

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The Elusive High-Achieving Working Mom: Unwilling to Sacrifice For Her Kids….Really?

Hey Econ-Mom (EM), I found one! A high-achieving working mom! (HAWM.)

The following are my favorite quotes from the linked article above:

“When you have multiple passions, a perfect balance becomes an unachievable ideal.” –> EM, you and I have already said this. So, even HAWMs agree with us.

“My life could easily descend into chaos; I use my routine to establish some semblance of order. That routine begins at 4:30 every morning with a workout while my house is still quiet.” –> Yep. I have noticed, us working moms are often super-early birds. I wish I always used my time to workout, but it’s pretty rare. I usually drink coffee and read articles for an hour. I am so grateful, however, that the days my children woke up at the same time that I did are over. The very thought of a child coming down the stairs right now and disturbing my quiet time sends me into fits of PTSD from the marathon that was their younger years. (I am only slightly exaggerating.)

“2. Compartmentalize effectively.” –> This is why I actually prefer working in the office; although, I LOVE and am so grateful for the days I don’t have to commute. It’s a mixed bag. But I do compartmentalize much more effectively when I have office days. Today is an office day, and I will need to get moving very soon. (Sigh.)

“To be clear, this is a goal; I’m not perfect and this is not every day. There are days when my professional goals require me to trade time at home for more time at work and vice versa.” –> Yep. I can relate to this. It’s also nice to hear it happens to HAWMs.

“My imperfect balance would never work if I was afraid to ask for help. Being a working mother has taught me that it’s not only acceptable to ask for support from colleagues, friends, and family – it’s imperative.” –> Yep, again. Though I still don’t like to. Fortunately, I have found other moms who also are not afraid to ask for help. So, we help each other out. I am very, very grateful for them.

“I realize that a large part of my imperfect balance is good fortune. I’m fortunate to work at a company that cares about my professional and personal aspirations and encourages the unique path I’ve chosen. I’m fortunate to have colleagues who support me beyond the call of duty. And I’m lucky to have a husband, friends, and family who are just as dedicated to my family as I am.” –> I am so glad she said this, or I might have wanted to reach through the computer and slap her, as EM once quipped.

To transition poorly: Today is the 10th anniversary of the day I went to the hospital for a tri-weekly appointment — they were monitoring me that closely — and instead of being sent home, was induced. SC1 was not born today. Or tomorrow. She was born on Leap Day. How’s that for an almost 48-hour labor story? It wasn’t as bad as you would imagine. The induction didn’t work, and I barely had contractions. But it did begin a chapter of my life I like to call: “Well, That’s Not Quite What I Expected.”

I have written about this before, but the first five years of SC1’s life were very hard for me. She didn’t have any severe, debilitating disabilities. But she had disabilities in the sense that we could not lead a “normal” life. Between food allergies, literally constant illness that devolved quickly into bad asthma, including one hospitalization, severe speech impediments and delays, coupled with tri-weekly speech therapy (which also applied to her younger sister), and sensory processing issues: Every day was like a battlefield for my sanity.

There is zero way of knowing how SC1 would have fared if I had been a “C-suite” mother. But I strongly believe she would not be the extremely articulate and well-adjusted almost 10-year old she is today, if I had not been willing to sacrifice for her. And here is where I absolutely cannot relate to the featured HAWM in today’s blog post, who began her essay with this paragraph:

“I’m the head of marketing for a 950-person consulting firm. I’m also the mother of a 4-year-old daughter and 2-year-old son. Both roles are demanding, challenging, and enormously fulfilling. I’m committed to each of them. And I’m not willing to sacrifice one for the sake of the other.” (emphasis added).

Really? Are you sure? You wouldn’t sacrifice your job for the sake of your children?

I find that hard to believe. And obviously, you have also had the good fortune (she has admitted she has had it, so I will not be too hard on her) of not having to. If you had a child with special needs, you would have had to. I have seen it in my own life. I have seen it in friends’ lives. I know EM has experienced it in her own life.

I am not trying to elevate or applaud myself for accomplishing what I have with my child(ren). I am just once again pointing out that sometimes, “having it all” or “doing it all” is JUST. NOT. POSSIBLE. And it doesn’t have anything to do with a woman’s ability to wake up at 4:30am; or compartmentalize well; or have a great support network. Sometimes, circumstances are what they are that make working just downright impossible. It could be because of the woman’s own health issues. Or her kids’ health or developmental issues. Or a combination thereof. If you yourself have never had to deal with it, just be grateful, and don’t for a second think that it’s just an excuse. It’s not. I’ve seen it. I’ve experienced it.

And I am also grateful for my good fortune that – today – I can work to help support my family. Even though, there are also days, I wish I didn’t have to.

Econ-mom: UGH, that article.  I can’t decide if I find it annoying, because I’m jealous (since, as Law-Mom rightly points out this woman clearly has easy children) or because the article is just supremely unhelpful.  Allow me to paraphrase that entire article:

“I have a high-power career and two young children. How do I do it all? The same way men have been doing it all for decades. I don’t do very much parenting.”

Sorry if that was too snarky… I’m not trying to criticize her parenting.  (And really, who even knows how much parenting she and her husband do, given how vague that article is).  I’m sure her children are doing fine, and, if at some point they are not thriving for whatever reason, she and her husband will re-evaluate their lives and, likely, at least one of them would scale back their careers.  (By the way that is essentially what happened to Anne-Marie Slaughter which is probably why I like her so much. Read her book it’s so good.)

Honestly, I would not be surprised if this woman has never considered what her life would be like if she had a child with a disability. Who does though? I didn’t, until I was forced to. That’s part of what it means to live in an ableist society.  Disability is something to be hidden away and not discussed. That way, when you find out you are joining the Disability Moms Club your first reaction is likely fear, because you have no role models, no point of reference.  And then you get to hear from women whose children have never had so much as a runny nose that it’s all possible if you just “lean in” more!

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A Short Rant on Forms

Econ-mom (EM), I feel a rant about forms bubbling up inside of me.

You mentioned forms in a prior post. I have just spent the past hour of my Saturday afternoon (and I am still not done) filling out forms for an after school program my girls are joining mid-way into this semester. (The reasons for this late transition are numerous. It is a very long story for some other rant on finding suitable after school care and the law).

Here is my rant:

WHY DO I HAVE TO KEEP FILLING OUT THE SAME FORMS OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AGAIN!?!?

She still has allergies. She still has asthma. THIS IS NOT CHANGING. Same program. Same child. Can’t last year’s paperwork carryover? Can’t you hand it to me with an addendum or something for me to sign? I’ll initial every page. “Yep. Still applies. Yep, this applies, too. Yep, she still carries around 3 different medications with her.” Initial. Initial. Initial. Done. Thank you.

Yes, I authorize you to administer whatever medication is needed and necessary to KEEP MY CHILD ALIVE. You don’t need 25 sheets of paper with my signature on it to tell you to do so. You just need common sense.

Does this sound petty and whiny? Keep in mind that the vast majority of these forms require a physician’s signature. Do I still sound petty and whiny?

(For the purposes of completing this last batch of forms, I found her summer school forms that were signed by my daughter’s physician. I attached them as an addendum to the new forms they wanted me to sign, indicating that the documents apply across the board to any and all programs my daughter is involved in, and then signed and initialed the life out of that paperwork until it could not breathe its last breath. And if anyone gives me any iota of a complaint about the sufficiency of that paperwork, I will first try to calmly explain that, as a legal document, what I did was 100% perfectly acceptable. And if that doesn’t work, I guess I will just have to smile, grit my teeth, and very nicely ask our saint of an allergist to sign some more forms for me…again.)

Okay. Rant over.

P.S. It took 10 minutes to fill out SC2’s forms. So, there you have it. It takes about six times longer for parents of special needs children to fill-out paperwork for activities and programs their children participate in.

EM’s comments:

There’s something ironic about an attorney complaining about too many forms – ha! (Sorry Courtney, I’m sure this is playing into some lawyer stereotypes that you don’t appreciate.) Then again, perhaps you have the power to fix this!  Please add to your to-do list “start a non-profit dedicated to reducing the number of forms parents have to fill out.”

[Law-mom (LM): Actually, it’s funny you mention this, because I initially had a paragraph about this being the fault of attorneys. But then I scrapped it, because it got so tangential that I needed a legal disclaimer that I wasn’t providing any legal advice or opinions on the subject. Ha!]

Let me just state that I can’t believe you have to get a physician’s signatures for all these forms.  That’s right up there with going to the post office for me.  I need to get a TB test done so that I can volunteer at Tuffy’s school, and I have been now putting this off for about 10 months.  I almost got it done last time I took Tuffy in for an evaluation, but after doing a 1.5 hour eval I stopped by the nurse’s clinic where they administer the TB test and there was a HUGE line.  And we already needed to go wait in another line to get flu shots.  And this was taking place on a weekday morning so Tuffy was missing school.  Of course, had Tuffy and I decided to wait in that line, I would have had to drive back to the clinic 48 hours later to have someone read the test.

[LM: As Jen Hatmaker would say: FOR. THE. LOVE!]

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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.