Tiny Salutations

Tiny Salutations


Tuesday, November 10, 2015

Dear Parents (Yes, All of You!)

Dear Parents,

I would like to introduce you to someone......

This is my son on his first and second day of school.  Today is his third day of school in the special education preschool.  He has an adorable smile and infectious laugh.  He is so tiny that they had to order him a smaller chair since the preschool ones were too big and not supportive enough to his weaker areas.  He has strengths, such as already learning to read and write.  He has weaknesses, such as gross motor delays and intense sensory sensitivity.

Most of all, he is a miracle.  He was only one pound at birth and on life support for quite a while.  His lungs did not work when he was born, and as a result his lungs and several places along his airway are damaged.  As a result, any illness he comes across- especially 'just' a cold- can turn into a medical emergency.  It was a difficult decision to send him to school.  What if he caught a cold?  Can I trust these folks to make sure he is safe during snack (he has to be fed differently so it doesn't go down into his lungs) or on the playground (where motor skills are a challenge)?  Our decision was not made lightly and followed many nights awake trying to decide what was best.  It is certainly the most agonizing decision we have made since he left his first hospital stay. A typical parent may worry, "Will he make friends?  Will he behave?".  In addition to those thoughts I also worry, "Will his lungs fill with fluid? Will his airway close up? If his airway does begin to close, will they recognize it in time to help him?"

I want you to know this, parents, because you may not think of this when you send your child to school or to church or any other place my son (and others with severe medical issues) may be.  I understand that it is an inconvenience to have to stay home from work or miss out on other activities, but I am begging you to think of the other children your child may come across who were not blessed with health or an amazing immune system.  What may be an annoying runny nose to your child could put mine in the hospital.

I have experienced every parent's worst nightmare- watching my child breathe through tubes and machines and waking up in the middle of the night with my child unable to breathe, rushing them to the ER and doctors swarming over him to open his airway back up- several times.  In other children, this same illness would have been just a mild runny nose and cough.  I know that you may not fully understand the feeling of watching your child kept alive solely by machines, and I hope you never do, but I hope that you can understand how it could feel to fear for your child.

I know that most parents simply don't think about sending their children out into the world sick, because they have not seen or experienced being around these fragile children.  So I would like to put a face and a story to these medically fragile children and to think about them before sending your children out the door.

Edit:  My son has gone back to homeschool after just one month of public school.  Long story short, we no longer felt confident in his health and safety while at his school, and is pulmonologist agreed.

I would like to clarify a few things though after this story has gotten quite a bit of attention.  This article is only referring to sending your children out when you are aware that they are ill and only contagious illness (not allergies, etc.).  Also, this article does not only refer to thinking about keeping your children home from school, but from keeping them from going out to things like Sunday school, children's museum, community classes etc. in general.  People often say that children will get less sick if exposed to germs more often.  Well for the majority of kids that may be true, but it is not true for all children.  Some children have genetic or biochemical reasons they cannot develop an immune system.  Our son in particular does have a sensitive immune system, but his immune system is not the problem- his lungs are.  His entire respiratory system from top to bottom works poorly.  So his immune system can fight off the illness, but his respiratory system cannot handle the symptoms.  Several areas are damaged and simply close up (or other issues) from cold symptoms, which stops his breathing and may or may not open back up without emergency help.  So even if his immune system gets more used to getting sick, it doesn't matter, because his lungs cannot be repaired.  

I have been asked often why we don't just homeschool.  Up until this point we had and we have since returned to homeschooling.  Our son and I work very well together in terms of academic learning.  He knows much of what children learn in kindergarten.  The reason why we decided to try public school is that in addition to serious medical illness our son also has autism and developmental delays.  Public school offers therapy services and equipment that are not always available or have long waitlists in the community.  Our primary reason to try public school was to give him opportunities to interact with other children in a semi-controlled environment.  We had tried to give him these opportunities outside of school- Sunday school, museums, libraries, community classes and play areas- and found that children attend these sick often as well.  He would often get quite sick after attending these as well.  So when in a new city where we don't know anyone and have no opportunities to meet friends, he often goes many weeks without interacting with another child.  I don't think that any child should have to go weeks without seeing another child outside of Children's Hospital.  I think the reasonable solution is to keep sick children home.  That way everyone can have the opportunity to grow up as safe, healthy, well developed, and happy as possible.

I hope that these edits help to explain things that may not be apparent in the original article or to others who have not had children in this situation.