The costs of being a parent to a child with special needs are steep and plentiful. From the financial burden to the emotional toll there is no arguing that raising a special needs child is costly. On the good days, I tell myself the costs are worth it because the experience of being Caroline’s mom is priceless. On the bad days, I wonder how young I am going to die because of the massive amount of stress I am under constantly.
Every aspect of my life is affected by my status as a special needs parent. Literally, no aspect of my life is untouched by the fact that I have child with severe special needs. My relationships, finances, career, health are all majorly impacted.
There are days that I grieve for the typical child I thought I would welcome into this world when I was pregnant with Caroline but also for the person who I would have been. On the good days, I convince myself that we are both better off – Caroline is perfect as she is and I have been forced to stretch myself and grow in ways that would have been impossible if not for Caroline having autism. But then there are the days like today when I yearn to talk to my daughter (not an iPad), plan a vacation not just take a day off from dodging bill collectors, have a challenging career that allows me to grow as a person and a professional and have time for the friends who I miss so desperately.
It is not often that I throw myself a pity part but when I do, I go big. So today, I will share the
5.) Forms: health history, behavior, therapy intake, school registration – all these forms are HATED. The average form I fill out for Caroline is 20 pages long and insists that I recall every medical and developmental challenge Caroline has experienced and share it in great detail. And while I have all of this information neatly organized in a wonderful Google Document it is never acceptable to just print that information off, I must handwrite the answers to each of these agonizing questions on their form.
4.) People who try to relate to me by talking about their child who is a picky eater. I am sorry your child doesn’t like to eat broccoli but that doesn’t compare to the countless years, I have made weekly trips to feeding therapists to then come home and feed my daughter through a feeding tube. And yes, my daughter LOVES broccoli and all vegetables but she simply cannot eat enough calories by mouth to sustain life. Feeding tube formula is sticky and it smells bad and I am just so over it.
3.) The depression and anxiety that are exasperated by the stress of caring for Caroline make my life almost unbearable at times. The more intense the stress gets the more severe my depression and anxiety become. This is an endless cycle that I battle daily and it is exhausting.
2.) People who are in positions to make decisions about the education and administration of benefits for kids with special needs but have never spent time with a child with special needs drive me up the wall. Currently, included in this bucket would be anyone who I have ever talked with at Ohio Department of Development Disability and pretty much anyone who has ever made a decision on behalf of a health insurance company.
1.) Sleep deprivation. I have not slept for 8 consecutive hours for 2 consecutive days in nearly 7 years. This results in the type of exhaustion that causes my bones to ache, my mind to dull, and completely depletes my patience. I am always running on fumes. I can handle being tired but living in a state of total exhaustion is torture.
Care to join my pity party? What drives you absolutely nuts – vent go ahead it will make you fee better.