Today I just need to vent. I wanted to share a note that I posted on Facebook:
My little man’s ASD has introduced me to a whole network of parents that, although we are total strangers, we are bonded by something stronger than we could imagine! Just today I was comforting two moms who are at their wits’ ends… both searching for solace and support on online networks that have brought us together even across the globe!
I had to chuckle this week when I heard a parent of a “neurotypical” child, a self-proclaimed “soccer mom,” go on and on about taxiing her children to after school and extracurricular activities. But you know what? Although all of those activities are authentically time consuming and demanding, they are being done by choice. In comparison, we have the ASD parents whose entire lives are literally subject to the endless myriad of appointments for therapy, medical work-ups, social skills groups… you name it! Yet these are not choices for us…this is not entertainment nor are they hobbies, they are a lifeline to our children’s futures. Yes, we must view these things as INVESTMENTS of our time, knowing we will see our returns in the future-- and I don't mean getting really good at a sport or an instrument so the kids can get a scholarship for college. I mean teaching and giving our kids the tools they need just to be an active member and productive participant in society!
Let’s give a typical scenario of a parent of a child with ASD. In a week, we can easily have to:
1. Bring the child to school (where they receive special education, social skills training, behavior therapy, occupational therapy, speech therapy and maybe even physical therapy on top of the regular academics)
- this involves knowing your special education law, making sure the school system is providing the help your child needs (which you usually have to FIGHT for) THEN making sure those services are actually happening!
2. Alter your work schedule (that is IF you are able to work!) to be able to drop off your child at 8 or 9am and then be free by 2 or 3pm to pick them up after school
3. Upon pick up you are usually in the mad rush to make it to:
a. Speech therapy 1-2 hours a week
b. Occupational therapy 1-2 hours a week
c. Behavior therapy (if you are lucky) 5-20 hours per week
d. Social skills training 1-4 hours per week
4. Hopefully, you’ll be able to add in some “typical kid stuff” such as
a. Playdates- hopefully at least one per week
b. T-ball or soccer
d. Arts and crafts or other fun art activities
Keep in mind that we can't just sit back and "let the kids play" during a playdate. These need to be "facilitated" and orchestrated so that our children can be successful in their interactions while learning how to be social. 9 times out of 10, we are asked to remain with our children during extra-curricular activities because they don’t have the staffing or training to deal with kids like ours. Tired yet? Well, let’s add to that the fact that so many parents of kids with ASD have to stick to special diets, usually gluten-free and dairy-free. This means preparing each meal from scratch using special ingredients—very few short cuts in this scenario!
In between, you have to keep straight all the medical appointments you have pending: developmental pediatrician, neurologist, DAN doctor (if you’re into that—we’re not), developmental psychologist, child psychiatrist (if your child is on medication), GI specialist, on top of regular pediatric and dental check-ups.
Our lives are a mish-mash of picture schedules to help our kids know what’s coming and to preview changes in their schedules. Many of us have to rely on communication devices because our children are not able to speak. We can’t just pick up the phone and call a baby sitter so we can go on “date night.” Finding an appropriate sitter requires plenty of planning and sometimes even a nice chunk of money. Even taking a different route somewhere may be a cause for a major catastrophe and subsequent meltdown requiring you to either pull over or pray to God the whole way home that the safety straps on the car seat or seat belt will be strong enough to keep your child from jumping out the window!
I wish I were exaggerating… if only! But, no, this IS our reality! Most of us are still paying for and changing diapers well after kindergarten. We can’t remember the last time we actually slept through the night or actually sat for a meal (sometimes we can’t even remember if we chewed our food!). A whole lot of us have put on more pounds than we care to admit because of the terrible eating habits we’ve fallen into, or we’ve lost a ton of weight because we don’t even want to eat.
Yet at the end of the day, as exhausted as we are, we just stand there and stare at our children in wonder… their angelic faces tug at our heartstrings and it’s hard not to let the tears flow. No, most folks do NOT know what it’s like, nor can they relate or even begin to fathom the level of demand, stress, financial and physical exhaustion we live day in and day out. Yet each day, we get back up and do it all over again. Our children are our lives and they are worth every drop of sweat and every tear that falls.
I am not angry… I just ask for a bit of perspective. No, you can’t imagine what our lives are like, but, please know that we’re all right! Your favorite carpet may have a wine stain, your kiddos may have scribbled on the walls or even broken a window… just keep in mind that so many of us would give anything to be able to just sit and sip a glass of wine. We also wish our kids would pick up a crayon or a ball and want to play like your kids do. We are not a group to feel sorry for, but, please don’t ever tell us that you know how we feel because you don’t… you can’t! Only a person who’s walked in these shoes can possibly relate or understand. All we ask is that you be a bit more conscientious when you air our your gripes and complaints… We spend our days counting our blessings even in the midst of our chaos. Maybe you should do the same!