It's Dead Jim: The Loss of an Allergy (and All It Entails)

 As people on Facebook were first to find out (sorry) last Wednesday was our yearly follow up with the allergist.   I'd been looking forward to the appointment for weeks, sick I know, because I was excited to find out how my son was doing.  You see, for the last six months Alvah's skin had been clear; beautifully, wonderfully so.  And so I was hoping that maybe, JUST MAYBE, Alvah would have lost at least one of his mega bady food allergies (as in the life threatening ones);  peanuts or garlic.

Well, the allergist was willing to do the prick test for the peanuts and garlic after seeing his clear skin.  The peanut allergy was scary as all get out to watch welt up on his back and watching the allergist standing by with an epi-pen ready just in case, especially after him being peanut free for a year.  Sort of made my husband and I sick to see it.  But the dot for the garlic didn't welt.  At all.  It was actually darned near impossible to tell where the garlic dot had BEEN once the 20 minute wait was up.

The allergist studied the negative reaction on the test and the fact that we'd, in desperation to my son's continued quest to purposefully lose weight (or so it seemed to us), introduced some processed garlic back into Alvah's diet without any type of bad reaction and came to a decision. Alvah is now approved to eat garlic again.  Raw, processed, the whole kit n kaboodle.

I kept expecting to feel this thrilled feeling at the thought that we'd gained the garlic back, and I tried to feel excited...I really did.  And don't get me wrong.  I am through the roof elated that I can once again buy garlic cloves and have them in my kitchen without worry and that I can actually EAT garlic again without worrying about hurting my son through second hand exposure.  That I can buy some cheaper options at the store when it comes to tomato products and such.  That, instead of having to buy two different types of ketchup for the kids that now I can just worry about getting Heinz organic ketchup for my daughter's corn allergy.

Yet, the idea of feeding my son actual raw garlic, cooked or otherwise out and out terrifies me.  I have battled the eczema battle for so long that a part of me is actually mourning the loss of the garlic allergy.  Why?  Because that means Alvah CAN eat garlic again.  And that means that the garlic allergy might come back.

I mean look at that skin.  Would you want to mess with skin this clear?  Yeah, I didn't think so.   This time last year my son's hand would be a mass of cracked and bleeding skin with little clear skin to be had (his hands always got the eczema the worst).  His nails didn't grow right because his hands were always so cracked from the eczema and he held his hands in a semi-curled position, which his OT at the time had compared to someone who had suffered a stroke and was in constant pain from it.  I had to slather skin cream on him constantly just to keep his joints from bleeding whenever he'd have to use his hands for anything and he had to wear gloves at school because of the blood exposure to other students.  Yes, it was that bad.

But, Alvah can have garlic again.  The prick test proves it.  Shouldn't I be happy instead of feeling paranoid?

I'm still baffled that I feel this way.  I mean I have worked really hard the last year and a half to keep garlic and other allergens out of this house.  To make sure my child was safe from the allergies that could make his skin crack.  And kept hoping that if I did a good enough job that maybe he'd be able to regain some of the foods he'd lost and be able to enjoy them again.  And yet now that the garlic allergy is gone I'm scared of reintroducing Alvah to foods he used to love with garlic in them.  Roasted garlic mashed potatoes.  Chili, the way he liked it.  Tunafish and crackers with seasoned mayonnaise.  The list goes on.

When you realize you have food allergies to battle it changes your life dramatically.  People often ask me what it's like to suddenly have your child diagnosed with a type A categorized food allergy or other life threatening food allergy (which peanut was type A for us and garlic was in the potentially life threatening category too, although not epi-pen severe).  I liken having your child diagnosed with any food allergy to getting hit in the face hard with a board.  It's shocking.  It hurts and it really throws you through a loop.  But, you recover, pick yourself up off the ground and start to work on healing and getting on with life.

And then, it seems, when you lose a food allergy, it's like getting hit in the face with a different type of board.  It's shocking.  It's exciting.  It's worrisome.  And it's just as big of a change as getting the allergy in the first place.  Ever tried to think, in reverse, of what foods have garlic in them?  Yeah, I'm still trying to figure it all out.  I had the breakthrough this morning that I could actually buy nitrate free sausage and it would be safe for all of us to eat now.  Yet, the idea of making prepared sausage is so alien to me at the moment that it's almost like learning to cook all over again.  It's somewhat overwhelming.

I have read a lot of articles throughout the years that it is possible to mourn the loss of a food, such as Celiacs when they find out they have to give up gluten for good.  I know that it's true as I have mourned the loss of more than one food on the allergy roller coaster.  Yet, is it possible to actually mourn the loss of an allergy once it's gone?  I'm starting to wonder.

DIY Autism Therapy: Fine Motor Coin Drop Game

In honor of Autism Awareness Month, I thought I'd try and get some blogging in on some cool autism related projects that you can do at home that might help out your special kiddo.

I'd like to take credit for this idea, but I can't.  Actually, Jenny, one of the OT's at Mountain Magic Therapy for Kids (where my son goes) came up with this idea and gave me permission to pass it along.  Why did I want to?  Because this was, what I like to call, Alvah's "gateway toy" in that it was the first toy that someone had tried with him that actually engaged him for more than 30 seconds.  Double bonus was that it is a GREAT fine motor tool.  The slot on top of the toy makes for a good pincher grip exercise and it also can give you a really sneaky way to get your kiddo to cross the mid-line.

If your kiddo ends up liking this game get creative on where you put the coins because it's a great way to get kiddos to twist around and actively seek where the coins are.  Kera, Alvah's OT, even got him to switch coins from one hand to the other and other great exercises with this game.

I hope maybe it'll help some of you too!

Enjoy!

Yes, my coin game has taken a bit of a beating *laugh*

Fine Motor Coin Drop Game

You Will Need:

• 1 long transparent container with a lid you can make a slit in (tennis ball containers are awesome for this, which is what I used and what Mountain Magic used as well)
• 1 Pair of heavy duty utility scissors
• 1 Package Transparent Counters (preferably multi-colored)  I linked to the ones I bought on Amazon.
• 1 Container to store your counters in (I use a 1/2 pint mason jar)

1.  Take your transparent container lid, take your scissors and make a slit JUST big enough to fit your counters through.  You want the slit to have some resistance to it so that a child will have to push the counter through the slot to help develop those fine motor skills!  Once you have the slit done, you can take bright duct tape and surround the slit (if you are using a pop off type of lid, I'd suggest doing this so you don't inadvertently break the lid with light use).  I had a pretty hefty lid, so I just took a sharpie and outlined the slit so that it would make it easier for my son to see where the slit in the lid was.

2.  Fill the transparent container with water.  You want to go up pretty far so that the coins will really float down through the water.

3.  Screw on the lid (or pop on the lid) and sit down with your kiddo and show them how the transparent counters will float down through the water after they press it through the slot.  This entertained my son so much he would laugh through 20 minutes of exercises with this toy.  It was awesome!  Some ideas?  Place the counters behind your child so they have to reach backward.  Place coins on the opposite side of their body from their dominant hand so they will cross the mid-line to get the coins.  Get creative!

Once done with the toy be careful when draining out the water so you don't end up with counters down your drain and then just let everything air dry until the next game time!

Enjoy! 

Product Review: Cloud B Twilight Constellation Night Light

 Just a quick note:  I'm not an active Amazon.com Associate anymore for my own reasons.  I still use them and will link to them, but I won't be using associate links anymore.  So, feel free to follow the links as they'll just be general linking to Amazon links, no worries about me making money off of you or anything :).

I normally don't really do a lot of reviews on the blog, but honestly this experience was so hysterical I just had to share.

As anyone who knows and talks to me for more than two seconds would tell you, I don't get a lot of sleep.  I'm normally walking around looking like a glorified zombie most days, I can't remember the last time I really looked in a mirror to see how bad that problem has gotten.

The lack of sleep is due to my son.  See due in part to undiagnosed food allergies when he was younger (not for certain, but it's my theory) and the autism as he got older, my son has been on the newborn sleep cycle (two hours sleep, up one hour if I'm lucky, down for two more hours, etc) since he was born.  It has not been fun.

The result of this sleep deprivation has resulted in me buying pretty much anything mentioned on any autism site that says it MIGHT help autistic children to sleep.

Thus how I found out about the Cloud B Ladybug Twilight Constellation Night Light.  They recommended it as a means to help autistic kids to sleep (other than Melatonin,which didn't work with Alvah when I tried it, and I'm worried about trying different forms of it due to having to give him allergy meds every day.  Don't want any weird reactions occuring).

My husband was going to be going out of town for work this week, so I ordered the nightlight with a good week and a half to spare time-wise.  And waited with baited breath for it to come in.

The funny part comes in when my brain synapses finally connected AFTER I'd gotten and tried the light and I realized how very badly I'd misread my son.

First, I'd like to give my impression of the night light itself.  This night light is awesome.  Seriously, I'd have loved to have had this night light as a child.  The night light comes in the form of a stuffed lady bug (you can also order it in a turtle form I believe) and when you turn it on, which is easy to do, it projects stars all over the ceiling and walls.

Not only does it project said stars on the wall, but there's actual constellations that are projected, so you can teach your child about Leo the Lion and some other constellations (I'd name off the constellations for you, but my son chewed up the booklet it came with).  You can also choose between three colors:  red, blue or green.  The red is the most subdued of the colors, but the green and blue are very nice and bright and it's lit by LEDs so it stays cool.

My son was throwing a tantrum about going to bed the other night, so I turned the night light on (it even comes with batteries by the way) and left the room for a second to field my daughter.  The light completely freaked my son out at first because he didn't know where the lights were coming from.  When I heard the freaked out screams I quickly rushed back into the room to check on Alvah and placed the night light beside him on the bed and showed him how to turn the night light on and off and how to switch the colors with the easy to use buttons.  He immediately calmed down when I did that, so I went and read my daughter a bedtime story and figured that when I went back into his room he'd be asleep.

Dumb me.

See my son loves movement and colors.  So, of course, I go back into the room and he's switching colors on the night light from one color to another, bouncing the lady bug on the bed by his hyper active movements, which made it even better for him, and he was laughing like a maniac.  Since then it has become a favorite night time toy of his, but I can definitely say with utter certainty that it does NOT put him to sleep in any way shape or form.

On the other hand, my daughter has always been afraid of the dark and has slept with a light on most of her life (night light or other).  The first time she saw the lady bug night light she was enthralled and fell in love with it almost immediately.

So, in short, my son gets to play with the nightlight about an hour before bedtime and then it's put into my daughter's room to lull her to sleep at night (it's got a 44 minute auto shut off function on it too.  Very neat!).  So, while this experiment definitely back fired, it has helped my daughter's sleep be more peaceful so I can't really complain.

So, for non autistic kids I'd say this nightlight is a keeper.  For autistic kids...well know your autistic kid before you order this out of desperation or you might end up like me and having a new and interesting toy to play with instead of a sleep aid *laugh*.

Dealing with Autism and Allergies at the Holidays: Some Questions Answered

My Christmas tree.

So, I decided this was as good a time as any to answer some e-mail questions that I've gotten the past little bit here that are holiday themed.  I hope the answers are of help to some people out there and if not, I hope they at least help Katrina and Rick (who to both of you I apologize for not getting to these sooner, but I've been sick with one of the various winter plagues that goes around).

One of the big questions I got e-mailed last week was from Katrina about allergies and the holidays.   It was a pretty loaded question, at least to me, so here it goes.

"How do you think I should deal with allergies at holiday parties?  I have a nephew who was diagnosed with severe (as in life threatening) corn and tree nut allergies earlier this year and I'm not sure what to make for him to eat at a holiday party I'm throwing in a couple of weeks.  Do you have any advice on recipes to make?

Katrina"

Okay, Katrina?  I'm going to take this question and punt.  Seriously.  But, with good reason, so just stick with me here.  My answer to this question would be this.  Do NOT make your nephew anything. 

Why?  Here's the good reason part of the punt.  If your nephew has life threatening allergies any ingestion of corn or tree nut could end up with him in the hospital, or at least suddenly being unable to breathe and you panicking as his mom or dad hurriedly sticks an epi-pen into his thigh.  That doesn't exactly shout "good times" does it?

Even if you are super careful with what you make and buy flours and things that might be okay for your nephew to consume, my biggest concern is with cross contamination.  If no one in your family is allergic to corn or tree nuts and you're not used to those things being out of your cooking regime, there very well could be residual corn or tree nut particles floating around your kitchen space or hiding in your mixer...things like that.  And those particles, while not a big deal to you and yours, to him could be a very bad thing.  And the worst part with a corn allergy is that corn hides in ingredient lists a LOT and cross contaminates things in factories a LOT and it doesn't need to be declared like tree nuts do on packing labels.  So, that allergy alone could get dicey.

My advice would be to ask his parents to bring him some treats to the party and tell them the type of things you're going to be making for the other kids.  Trust me, as a parent of allergic kids, I'd ALWAYS prefer people to ask me to bring my own food for the kids.  Why?  Because I know it's safe if I bring it, while if someone else makes it or serves it, I can't be sure how much they know or how careful they need to be.  Oh the tales I could wow you with as I dove across the kitchen to stop my father-in-law from trying to feed my son beef jerky or the time he thought it was okay to try and feed him M&M's (speaking of life threatening allergies that gave me a couple of grey hairs).  Trust me, your nephew's parents will be relieved if you ask them to bring food as it shows you care and that you also want your nephew to have a good time and be safe in your home.

The second question comes to us from Rick.

"My girlfriend has a toddler son with autism who sticks everything in his mouth.  So one question is do you have any advice on what ornaments I should stick on the tree this year to make him safe.  And we're going to be having a large amount of my family at Christmas this year and I plan on introducing them to my girlfriend and her son.  Do you have any advice on how to deal with the gathering.  My girlfriend just tells me not to worry about it and that 'we'll deal with it', but I don't want to just 'deal with it'.  I want her and Andrew to have fun and for all of us to do it with as little stress as possible.
 

Rick"

Well, Rick, for one thing you're seriously cool for being concerned enough about these things to ask questions.  A lot of people don't have those types of insights and then get freaked out by things later.  Your girlfriend is very lucky to have you.  And don't worry about her saying the, "we'll deal with it" line.  She's not blowing your concerns off, I'm sure.  When you have a special needs child, trust me on this, you quickly get used to just "dealing with it" because 99.9% of people don't really ask the questions you just did beforehand and the parents just get used to winging it once they get somewhere.

Now, onto your questions.  For one thing, please do not take me as an autism expert.  I'm just a mom whose son is autistic, so don't take this as gospel or anything like that.  This is just some advice from me and my experiences on how Alvah reacts to things and how to deal with a child who sticks every single thing (except most food items *grumble*) into his mouth.

With the tree, my biggest hurdles I had to overcome with ours were the lights, and then of course, the types of ornaments I put on the tree.  I originally had multi-colored glass lights that I'd had for years, but when my son started sticking those in his mouth I was not only freaking out at the prospect of him chewing down and getting broken glass in his mouth, but there was the concern of electric shock and if nothing else getting burned by the heat.  So, I went out and bought LED lights for our tree as they are plastic and are cool to the touch.  When I put the lights up on the tree I wrap the lights around the branches on every two or three branches (now...when he was younger I'd wrap them around every branch the lights touched) to make them harder to pull off the tree, harder to get a mouth hold on, and give me a good early warning if he decided to try and pull the lights off (the whole tree would shake instead of a stand of lights flopping down).  It helped a lot to dissuade him from chewing on the lights.  Also, be sure to wipe down any new lights with a wet paper towel to remove the powdery residue that comes on the light cords.  I found out when pregnant that the lights can be coated in lead to help stop sticking.  Not something you want around a kid that sticks things in their mouth.  Overly paranoid?  Maybe.  But, I still felt better after doing it.

Avoid garland and tinsel on the tree.  My son ate both of those and it worried me to no end when I had to deal with that.  Instead go and get a good length of gold corded rope (you can find it in with the upholstery stuff at Jo-Ann fabrics or Wal-Mart.  I included a close up pic of the stuff I used above).  I got mine for 1.00 and some odd change a yard.  My six foot tree took 10 yards of rope to decorate (my advice is go a lot longer than you think you need and if you have extra you can either just cut it off or wrap it around the tree more), but now I have a nice compliment to the tree, don't have to worry about my son pulling it apart and he's never once shown an interest in eating on it.

And it goes year after year without needing to be replaced, so triple bonus.

The worst mistake I made was going and buying plastic "non breakable" ornaments for my tree, figuring that they were a good way to replace the ornaments I quickly figured out were not safe to keep on the tree.  Non-breakable my left foot.  My son is still chewing on those (my daughter loves to play with them, so while I SHOULD have just throw them out all at once, I've been doing it gradually for her sake) and makes a mess with the sheer amount of glitter that gets chewed off of the ornaments and I end up with sharp little bits of plastic getting onto everything as he chews up and spits out the ornaments (that he manages to chew on when I'm not looking somehow).  I have been throwing the ornaments out as he chews any type of hole in them and they won't be getting replaced with more plastic, that's for sure.  Also, avoid ANY ornaments with the stick in tops that most ball style ornaments come with.  The first time you see one of those ends sticking out of a toddler's mouth is the moment you know a good amount of healthy fear thinking of the choking hazard involved.

My advice, unless you know how to sew or are into sewing, would be to go and get some good old fashioned stuffed ornaments if you can find them.  If you can't, go and pick up some small stuffed holiday themed animals (those gift card holder animals work well for this) and then thread a needle with some embroidery floss in the color of your choice and make a corded loop by sticking the needle through the very top of the animals head and voila!  Instant ornament.  I actually made a lot of stuffed ornaments in basic shapes (trees, stars, bells, etc) by using fat quarters (quilting blocks that you can buy at Jo-Anns and places like Wal-Mart in their fabric section) and a good old pen before sewing them and stuffing them, but it all depends on how good with a sewing machine you are and how much time you want to put into the project.  You can also stick different stuffed animals directly into the tree for ornaments too if you don't want to deal with the strings.  I have some multi-colored frogs that I love to use that way when I need to pad out holes in our tree (I collect frogs). 

Also, and this is important, be sure to anchor the tree to the wall.  I know that it looks funky to have it tied up to the wall, but you never know when ANY toddler, special needs or otherwise, might try and climb a tree or try and get an ornament that is out of reach and try to knock a tree over on themselves and those things can hurt.  So, it's best to just be careful. 

As for the gathering itself...my best advice on how to deal with that is this.  If your girlfriend decides she needs to leave early?  Don't get mad at her.  Trust me, since my son has been born we've never made it more than an hour at a family get together before we have to leave as my son goes into "over stimulation" meltdown.  Mind you my husband has a huge family, but I've found that the "we'll have to leave early" rule pretty much applies to any gathering with strangers, so just be prepared for that.  I like to explain it to others that putting a child with autism in a large crowd of people is like hooking yourself up to an amplifier attached to a jet engine.  How long would you last before you freaked out?  You might want to prepare your family for the gathering by explaining it that way too.
 
And, I'm sure I don't need to tell you this one since you asked very pertinent questions, but please warn people not to start giving advice on how to "fix" your girlfriend's special little guy.  That will not enamor your family to your girlfriend at all and will, trust me on this, make the whole "leaving early" thing happen a little bit sooner rather than later.

And good luck!  I hope the gatherings go well for both of you!  And I hope that something I've said today might help you out :).  Happy Holidays!

Autism Test Results: A Letter to my Son

My son:

Before I state anything else, little guy, I'm sorry.  It seems like you've never been able to catch a break in your short life and this time is no different.  Whether it was waking up two hours into your young life choking due to reflux, which then reared it's ugly head for over two years.  Or the eczema that broke out all over your skin when you were two months old and has made you absolutely miserable ever since.  Or the food allergies, recently diagnosed, that have made you have to give up foods you love off of a short menu of items you really liked and yet STILL not cleared up your skin.

It seems like everything in your young life has been one battle after another and this latest news is no different.  Autism.  A new challenge to overcome.

I had always known you were different.  It seemed like it was a battle just to get you to smile at me.  You didn't want to play the games other little babies would laugh and smile at with little effort.  When around other people you rewrote the book on cranky as soon as I'd leave the room.  And you were quiet...and you stayed quiet.

"Oh, he's just quiet.  He'll talk when he's ready."

That seemed to be what I'd hear from everyone and, being a mom, I wanted to believe them.  I kept putting the nagging little voice in the back of my head saying, "You need help with him.  He's not just quiet" and shoving it into a box marked, "Parental Paranoia" and just kept on working day to day to get you to talk to me.  To make eye contact with me.  To answer to your name.  To point.  To show interest in ME pointing at something.   To get you to WANT to communicate with me.

At least you made progress in infant learning. I comforted myself with your little breakthroughs. The first time you made eye contact with me and held it. The first time you scooped and poured water in the bath. The first time you took turns with me playing with a toy. Those little things, along with your smile and the way you'd cuddle up to me, got me through the day.

I've found myself envious of other parents I see with "normal" children.  I've found myself on the verge of tears watching a one year old pointing at something and babbling at their parents and wanting to go over to them and telling them how very lucky they were that their child wanted to interact with the outside world.  Then I'd look back at your angelic little face as you flicked a piece of plastic and laughed and also realized how darn lucky I was that I had you with me and that nothing is insurmountable if you just work at it hard enough.

But, nothing I tried WORKED.  So, we had you tested.  And the results did not surprise me...although they were still hard to hear.  And yet, I keep thinking that it could be SO much worse.  You have strengths.  You have some non-verbal communication down, even if it's in your own "tongue" so to speak.  You will cuddle. You aren't violent. You are mellow and so DARNED smart. Everyone who meets you can see those things. Other parents out there are not that lucky.  I try to count my blessings.

It has been a hard three years for both of  us little guy.  And now, we have new challenges to face.  But, at least we KNOW now what this new challenge is that we have to overcome and have a means to get a plan into the works that will help me to talk to you.  To pull you out of that little shell that is built around the boy that is inside your head wanting to come out.  To start to find those missing pieces to the jigsaw puzzle that is your want to communicate and start to get them in order so that you will want to communicate with the outside world instead of being happy in your own head.

I am living for the days in the future kiddo and look to them with optimism.  That you'll point at something and want me to look at it.  That I'll one day soon get to hear your voice and get to hear your thoughts and ideas.  And I hope and pray that those days are someday soon because I desperately want to talk to you, my beautiful son, and hear you talk an actual sentence for the first time.

I make a promise right here, right now.  I will NEVER give up on you.  Ever.  Just do me a favor, alright kiddo?  NEVER give up on me.

Love,
Mom