The Challenge: Christmas celebrations and allergies

There are so many things that are part of Christmas traditions that I took for granted...poinsettias, real Christmas trees, fresh greenery, cookies with friends, parties and gathering with family. 

My sons have severe latex allergies.  over the last 10 years I have given 18 epipens and prayed that everything would be alright while we waited for the firetruck and ambulance to arrive.  This allergy is not to be taken lightly. 

Poinsettias have a milky white sap which disperses in the air every time a petal or leaf falls from the plan.  The sap contains latex protein which when absorbed through the skin can cause severe allergic reactions.  If you stop to think about it the beautiful plants are displayed all over the place.  This means that our sons can't be in those places.

Latex also cross contaminates foods prepared by kitchen staff wearing latex gloves during food preparation or when a latex spatula is used to mix and prepare foods.  This limits where and when our sons can enjoy Christmas treats.

Our younger son is also allergic to peanuts, almonds, walnuts, pecans and hazelnuts.  He breaks out in hives with any contact.  Without proper medication breathing problems follow quickly.  I must confess that I do enjoy nuts in some Christmas baking but not at the expense of my son's safety.  We do have nuts in our home ocaissionally but there are a lot of precautions put in place around food handling, cleaning and handwashing.

Last week our sons help make Christmas wreaths and arrangements for an auction at church.  Unfortunately, the greens set off an asthma attack for my younger son.  It has taken several days for his breathing to improve.  He was quite upset to have yet another allergy limiting festivities.

This medley of complications has lead us to explore other ways to celebrate while staying safe.  We are blessed to attend a church that has made a lot of changes to include the many people in the congregation with allergies.  We often try to host family and friends at our home where we can be certain about the food preparation.  I think the biggest loss has been not being able to go to the annual family Christmas celebration with my Mom's extended family.  As the family has expanded the number of people now requires bigger facilities which are often not safe for our sons.  We would like to come and see everyone but it just isn't possible without sacrificing safety.  While our home isn't big enough to host the gathering we would still love to see everyone.  The specialized support required for our sons means that we can't just leave them at home and head out of town to enjoy the party.

I am glad that we will get the chance to see at least a few of my siblings this year the next day when they come here for lunch.  Everyone is so spread out that we rarely get the chance to see them more than once a year.

I wish everyone out there coping with the challenges of allergies blessings for a safe and happy Christmas season.

something in common

My son came home from his play rehearsal Monday night and shared that one of the adults in the cast also has a latex allergy.  Thankfully, her allergy isn't as severe as my son's allergy.  I'm not celebrating that she  has an allergy but celebrating that my son has found someone else who understands and lives with something similar.  Having a rare medical condition and severe allergies can be lonely and isolating.  It isn't that people don't care so much as they just can't relate to how complex life can get.

The folks at Guelph Little Theatre have done an amazing job over the last few years making it possible for Andrew to participate on stage despite his allergies and physical limitations.  Going latex free means that costumes, make up supplies, elastics and props must be latex free.  Kudos to them for being willing to make the effort to include him!

Doing Things Differently

When you have children with special needs you quickly discover that going places is not as straight forward for your family as it might be for your friends.  In our case we have to check for latex safety.  We can't always make everything safe but we do our best to be prepared by giving the boys profilactic allergy medication, always having epipens and benadryl as well as a latex safe blood pressure cuff in case (heaven forbid) something should go wrong.  Next, we have to determine who will need a wheelchair.  Every day is different when it comes to what the boys are physically able to do.  If we need wheelchairs, then we need to determine if the powerchairs are the best choice or can we get away with transport chairs.  If both boys need powerchairs then we need to book mobility at least 48 hours ahead.  We also need to determine how accessible our destination is.  At this point we haven't even gotten out the door and I'm already tired. 

It can get overwhelming but when it works everyone wins.  This week we went to the Royal Ontario Museum.  We turned the outing into a mini vacation by booking a night at the Holiday Inn.  This meant that the boys could rest after travelling so that the next day they were better able to cope with the rigors of a whole day out and about.  We had tickets for the Terracotta Warriors exhibit at 10:00 and then spent the rest of the day exploring other galleries.  We had never before managed more than a few hours at ROM!

The one surprise was the Mc Donald's on Bloor Street near the museum.  Although the restaurant itself was accessible and latex safe (I'll deal with latex and restaurants in a seperate post another day) the washrooms were not accessible.  Thankfully the boys were able to manage.

At the end of the day, we were all tired but had a wonderful trip and learned a lot about a period of history that we were as familiar with.

Introduction

If someone were to ask me about what I do I would likely respond;  I'm just me.  I do what needs to get done.

I am a teacher, a nurse, a doctor, a chiropractor, a physical therapist, an orthotist, a case manager, a pharmacist, a not so savy computer tech., cook, washer, maid, personal support worker, a friend, curriculum creator, E.C.E., recreation leader,collector of resources and a Mom.  I wear many hats over the course of a day.  Do I have the peices of paper that go with these titles?  No, but life and experience are marvelous teachers.

I am a happily married Mom with two awesome sons who deal a lot of challenges with perseverence, courage and understanding.  My sons deal with their own unique combinations of challenges which include:  hypermobile ehlers danlos, syndrome, asthma, A.D.H.D, A.D.D., Tourette's syndrome, scoliosis, sensory issues, as well as anaphylactic allergies to peanuts, tree nuts, bee stings and latex.  In case that wasn't enough they are allergic to several medications (not the same ones of course ~ that would be too easy). 

These numerous challenges have also made learning in the traditional school system very challenging.  After several struggles and many tries with some amazing educators we are now homeschooling our sons through high school.  I should have paid a lot more attention when I was in high school because there seems to be even more to learn today.

I was told recently that my work experinence had many gaps.  That is indeed true because life keeps on happening around us and sometimes we need to change plans to keep our heads above water.  I have worked as a childcare provider at home and in licensed centres, support worker, gymnastic coach, kitchen staff, administrator, advocate and educator.  I have volunteered as a probation officer, representative on the special education advisory committee, block parent, Sunday school teacher, park cleaner, advocate and community worker.

I'm just me.