Neverland Without a GPS

Over the past 18 years I have learned so much about being the mom of a special needs kid from wonderful women. I’d like to share what I’ve learned with you, and let everyone out there know they are not alone. My son and I have been stranded in hospitals, spent long weeks where he was ill without a diagnosis, survived countless blood tests, broken bones and mental and behavioral problems. Maybe what we’ve been through can benefit others on the same path.

Caleb’s favorite Disney character is Peter Pan. It hit me one night as I was going to sleep that he will always be Peter Pan–he will never completely grow up. That leaves us living in Neverland and I have no clue how to navigate this beautiful, scary, isolated place.

Here’s a little bit about Caleb: he was born on time, almost 10 pounds, but he was blue. Within 12 hours of his birth he was taken to another state to have open-heart surgery to correct an interrupted aortic arch and a VSD. I learned at this time that he has 22Q Deletion Syndrome, a random event that caused him to be born without a piece of his 22nd chromosome. It is a hugely significant piece, and has been the route of his many challenges. Caleb is not typical of the syndrome so I won’t be focusing on it as much as I will focus on his many challenges.

Caleb is missing 1/3 of his immune system, so when he gets sick, he gets very sick. A few years ago, a routine virus kept him homebound for over a month. He has been fighting folliculitis, a staph infection of the hair follicles, for two and a half years. He has broken his wrist and his femur, because he lacks the instincts the rest of us have to break a fall.

Around age four, Caleb was diagnosed with autism and OCD. He has some stimming behaviors and some emotional blocks, but he is very social and seeks other out. He knows every make of car by their logo, and this is generally his first question to strangers–his attempt to bond with them. Caleb’s language is severely delayed and I act as his translator. Mentally, according to the Wechsler charts, he is extremely low functioning.

Caleb’s most frightening challenge is that he can’t regulate his body temperature. This means if he gets too hot or too cold, he could die. On the rare occasions he has overheated, it takes days to get his temperature back to normal. Fevers are extremely difficult to manage. It is easier to warm him up with blankets or turning up the heat in the home. But summer heat is devastating, and I live in constant fear of what it could do to him. I keep an ice vest in the freezer at all times, he has special units set up at school in front of his desk, and I am never more that half an hour away from him so I can swoop in and put him in my freezing car to help him cool down.

Here’s the beautiful part: Caleb is a sweet and loving child. He tolerates his many specialists with patience I can’t imagine. Many of them tell me he is their favorite patient. Caleb is always popular at school and his teachers love his positive attitude and how hard he works. Caleb is mobile except when he overheats. Caleb works extremely hard to try to communicate what he wants, without the benefit of complete language, and he accepts unbearable frustration.  Due to years and years of very hard work, I am able to take him to any restaurant, movie, play or church. He will let me know if he needs to leave, unlike when he was a young child and would just scream.

Here’s the scary and sad part: Caleb can’t communicate everything to me and my heart breaks for him. His language is so limited and he wants so badly to please that sometimes he compromises himself where he doesn’t need to. I worry about what will happen to him when I’m gone. I worry how he will function without his translator and walking medical encyclopedia.  I worry almosts every single second he is not with me, as much as I know that time away from me is vital in his ongoing development.

I completely adore this young man. That is absolute.  But there is evidence that caregivers at this level have shortened telomeres (the tips of our chromosomes).  This level of stress affects us down to our DNA.  So in addition to caring for my son, I need to learn to take care of myself.  We all need to do that, but when so much time and energy is devoted to the care of another, sometimes we let ourselves slide and I know I need to stop that.  Maybe you do too.

So, follow me as I seek that second star to the right and learn to navigate this unknown but navigable world.  I love the image of Peter Pan, Wendy, Michael and John holding hands and flying through the night sky.  Sometimes it’s easier to see where you need to be when you are flying above and looking down.

Like the Darlings and their favorite friend, we are all much stronger when we join together.