Pet Peeves (food allergies)

Today I realized what my biggest pet peeve is when it comes to food allergies.  It's probably not what you'd expect it to be.   It doesn't involve whether or not there should be peanut products in schools.   Or people that insist on bringing peanut butter to the playground, let their kids eat and then climb around on the equipment without wiping their hands off first (although that ranks up there pretty high).

Instead, it's the people that feel they need to convince a food allergy parent that everything is fine.

*It's ok to eat at Chick-Fil-A because peanut oil is refined and doesn't count as an allergen.

*It's ok to eat foods that are cross contaminated with the allergic food.

*It's ok to eat at (fill in the blank), because the food MUST be safe.  It's only mac and cheese/pizza/meatballs/soup, etc.   How could that possibly be a problem?

UGH, because it can be!

First, unless you're an allergist, or an expert on the particular restaurant and the food that they serve (as in you manage or own that restaurant and are 100% sure of the ingredients), please don't try to convince someone that the food is ok.  Because you have no way of knowing.  Let the allergy parent do the research that we've had to become so good at, and make our own decision.

Second, don't tell someone that because your milk allergic child can eat there, your peanut and egg allergic child will be fine.  Being an "expert" in one allergy, doesn't make you an expert in all of them.

Finally, I don't understand why it's so important to someone that's not involved in the child's life.  Why would someone care whether or not a child can eat at Chick-Fil-A?  Why would you go into a five minute spiel on your opinion that a food allergic child would be ok eating at a certain restaurant?  Is it an "I know everything" type of thing?  Is it that they think food allergy parents are paranoid nutcases (no pun intended) that need saving?  Does it offend them that you won't eat at the same restaurants that they do?

Other than the obvious problem that it's annoying to a food allergy parent who's just trying to do the best for their child, it can be dangerous.  A parent who's new to food allergies may feel that you know what you're talking about, and decide to listen.   Being new to food allergies is confusing and overwhelming enough.  Receiving inaccurate information just adds to it.

Two Years

Yesterday was a rough day. The weather wasn't the greatest, and Luke had his first occupational therapy visit. The visit was aggravating - I had trouble finding a parking place, and then we had to sit and wait 10 minutes past his appointment time before they called him back. He came out of the room twice with his therapist, and both times he saw that Cody was playing with the iPod Touch. It happens to be one of Luke's obsessions, and both times he threw a fit in the waiting room. I'm talking ear piercing screams, crying and throwing himself on the floor. I was completely, face turned bright red and want to crawl under a chair, embarrassed. Cody was bored out of his mind. The ride home was eventful as Luke had another tantrum, and Cody got a nose bleed.

It pretty much set my mood for the day. We were all tired and cranky, and I made both boys take a nap so that I could too...something that never happens around here.

Today I looked at the date and realized that yesterday marked two years since Luke's first anaphylactic reaction (story can be found under "food allergy" tab above). Two years since that horrible day when I watched my baby lose consciousnesses and begin to turn blue. Two years since I sat in the hospital room with him, praying to God that he wouldn't stop breathing.

I don't think I ever shared this part here, but once they got Luke stabilized that day, someone came in with forms for me to fill out. She asked me if I wanted clergy to come in and pray for Luke. I said no, because at that point I was so exhausted that I just wanted to rest (Luke was sleeping). I didn't feel like talking to anyone else.

Once she left though, I went into a panic. Why did she ask me that? Was he worse off than I thought? Would God punish Luke because I didn't have the clergy come in to pray?

Those are not thoughts that I would normally have. I don't believe that God would ever punish like that. But at the time I was so desperate for Luke to be ok, that the thoughts went through my head.

So here I am, a day after the 2 year mark, upset with myself for how I let such small things get to me yesterday. I was cross with Luke for not cooperating as well as I hoped he would, and I scolded him for it. Those things aren't important though. He's only 3 years old. 3 year olds have tantrums. What's important is remembering how precious his life is, and being thankful that he is here with us.

Speaking and Occupational Therapy

Luke has some new words and phrases! This week he started saying "mama needs that" and "morning". He also has some new approximations, such as "Oreo". Sometimes it takes a little bit to understand what the approximations are for, but it's exciting.

I've noticed also this week that he has been struggling to get some words out. It's heartbreaking to watch and listen to.

I am so proud of him. He works so hard and almost never gets frustrated. He will repeat what he's trying to get us to understand until we do understand.

Luke had an evaluation this week for occupational therapy. He saw the practice that his developmental pediatrician recommended. I went in with two necessities in mind. 1. They had to take our insurance, no having to submit our own claim and 2. We had to be able to get a regular session time either before or after one of his twice a week speech sessions, as his speech is across the street. Amazingly, both worked out so I think it was meant to be. Luke will receive OT every Monday for 50 mins before speech, as long as it doesn't cause problems with him tolerating both. Speech most definitely takes a priority, so if he has trouble getting through speech following OT we'll have to re-evaluate.

Cody's 6th Birthday Party

Cody turned 6 earlier this week, and we had his birthday party today.  I can't believe my baby is 6 already!  What's even more amazing to me is that Luke is 6 months older now than Cody was when Luke was born.  Time goes by way too fast.

We had a Lego themed party, because it's one of Cody's most favorite things right now.  Mama's too...I was never a big Lego person growing up, but I love building them now! 

Developmental Pediatrician - Follow Up

Today we made the trip into Bethesda, MD for our follow-up visit with Dr. Conlon.  The appointment went well - the doctor was pleased with the progress that Luke has made in the last 6 months.  Not just verbally, but also fine motor.  He noted a couple of small delays with some skills that he tested, but nothing major to be concerned with.  Just some things that I need to work on with him.

We talked about the sensory issues.  The doctor wants us to see an occupational therapist, but he sees the sensory issues more as a side effect of Apraxia (which is super common) than being it's own disorder.  So, no diagnosis.  He doesn't feel that Luke needs a lot of visits with an OT, just a couple to mostly teach me how to work with him at home. 

Luke gained 4lbs, and grew some, since the last appointment.  He's up to a whopping 2 percentile for weight!  Whoohoo!  Ha!  He's less than 2 percentile for height.  And his head circumference was 52 percentile.  So basically he has a tiny body and a normal size head.  Cody says it makes him a bobblehead =)  His growth curve doesn't seem to point to any hormonal issues causing his small size (according to the doctor), but Dr. C. wants us to take him to an endocrinologist to be sure.  So that will be our next venture I guess.

2:1 Conference

Why I Want to Attend the 2:1 Conference

The Homeschool Classroom is hosting a giveaway for one ticket to the 2:1 Conference and so I am going to touch on why I want to go.

The biggest reason is that I want to be the best homeschool mom that I can be. The lineup for speakers at the conference is amazing. Carisa from 1+1+1=1 one of the speakers that I am most looking forward to hearing. Her blog, after all, is the one that made me realize that I really could homeschool my boys and has been a huge help in our homeschooling journey.

Another reason is that I feel the encouragement that would come from the conference will be huge for me. I'm 99% sure we will homeschool next year, but next year will bring new challenges as I will also begin homeschooling Luke for preschool. Two boys, one with special needs, at the same time. Who wouldn't need encouragement?

And finally, when I learned that the 2:1 Conference was going to be within driving distance of my home I was so very excited. I have yet to go to a homeschooling conference. Our decision to homeschool this year came after all the conferences had already ended. As I look into the various homeschooling conventions for this year, the majority are quite a distance away. With Luke's needs, me traveling to a conference is not an option. So for one to be so close to home is an amazing opportunity.

Sensory Processing

I've avoided talking about this because, well, I don't really want to add anything else to the list of things related to Luke and his therapy.  But a month or two ago his speech therapist told me that she thinks Luke may have a sensory processing disorder.  Basically it means his body hasn't matured to deal with everything sensory related.

Is it a diagnosis?  No.  

Does she seem pretty confident that it's another thing we're dealing with?  Yes.

The day she told me, I drove home in tears.  It was just one more thing to add to my list of worries for him.

She sent me home with The Out of Sync Child.  I read it.  Mostly.  I'll admit that I did a lot of skimming.  Yes, there were things that sounded like Luke.  But there was also a lot that doesn't sound like him. And there was quite a bit where I said, "don't all kids do this?".

She referred us to an occupational therapist.  I contacted her - but in the end, we decided to hold off.  Financial, logistical and time reasons were behind our decision.  More money out of pocket than we can handle right now + lonnng drive at least once a week + already full weekly schedule = too much to deal with at this moment.

Every session the speech therapist brings up sensory.  She feels that it's keeping him from benefiting as much as he can from speech.  He moves around a lot.  He becomes startled if someone picks him up quickly.  He has days where he doesn't want her touching his face to do the PROMPTs.  He works on their activity for a minute or two then moves on to something else.  Etc, etc.

One thing I read in the book is that we ALL have sensory issues.  Everyone has one or two things they don't deal well with.  For instance, I can't stand the dentist.  And it's not a pain thing.  It's the noises and smells that freak me out as soon as I walk into a dentist office.  I don't like to wear hats or anything too restricting around my neck or wrists.  If I'm sitting in a chair and someone even slightly tilts me back, I start flailing like a chicken because it scares the living daylights out of me.

So I'm on the fence.  I want to do whatever we need to do to help him.  But, he's only 3.  I want him to have a chance to come through things on his own.  I don't feel that the sensory issues affect his daily life, and so I don't feel that it's anything urgent to deal with right.this.second.  We're working on them at home, using sensory activities, and I feel that it's a good start.