Discussing the stress on a caregiver for special needs children is a terribly difficult subject for me to broach. To tell this story, it must be real, it must be human — and I have to find the courage to bare my soul. The only way to truly understand my daily life is to hear the truth. I’m not describing the boring details or exposing the multiple skeletons in the family closet for narcissistic reasons. I’m writing to give the hopes, joys, frustrations and sheer, utter embarrassment of our stress as caregivers a voice. Some caregiver, somewhere, needs to open his/her front door and expose both the sunshine and the shadows. I fear no one may, at least not soon enough, so I’m bracing myself for public humiliation, hate mail and snide remarks all in the pursuit of spreading awareness about autism and special needs children.
When my Asperger/ADHD/Bipolar/Anxiety son was about two years old, I called my high school science teacher and one of the best mentors of my life, Sandy Forgey. Crying because I couldn’t understand what I had gotten myself into (partly because neither of my children were diagnosed yet and I barely knew what autism was), I sobbed to her that no one gave me a manual for raising these children once I brought them home from the NICU.
She listened to me and then said, “Jodi, there isn’t a manual. Parenting is a skill you learn on the job.”
I didn’t understand that advice for several years. A few years later, I began to understand I needed to analyze as much of my child’s behavior as I could. I needed to research the symptoms that didn’t seem “normal” to me, and I needed to seek medical evaluation. Caregivers need to understand they are absolutely in charge. No one knows your child like you do. If you don’t agree with an assessment, get a second or third opinion. If any doctor doesn’t listen to your concerns or treats you rudely — fire them. I’ve been told to tread lightly, especially with specialists because they are so difficult to get an appointment with. That’s nonsense. The yellow pages are full of doctors, and most have very short waiting periods for appointments and nowadays don’t even require a referral.
I will offer two odd pieces of advice — do not judge a doctor by his/her bedside manner. Sometimes the nicest doctors I’ve encountered couldn’t figure out what took me 20 minutes on Google to figure out. I’ve had to let a few cranky ones know their bedside manner could use some work, but they provided me with the best medical care. Secondly, you can judge a doctor by the quality of their staff. If the staff is rude or inefficient, the doctor will always end up being worthless. The best advice I can give you is: take charge. Never count on any professional to have all the answers. Some doctors sneer when you find a research study on the Internet. Demand that that they discuss the issue, order tests if you feel it’s necessary and give your opinion respect. You will never find happiness or balance until you realize no one is going to magically appear and give you all the answers.
I daily deal with dosing meds/vitamins exactly on time, or behaviors can get out of hand. I prepare most meals from scratch, which is very time-consuming, to ensure plenty of fresh fruits, vegetables, a gluten-, oat- and corn-free diet is maintained and very few preservatives. When on the road, even to local doctor’s appointments, we are a ‘cooler family’. Due to our children’s inability to eat so many ingredients, going through the drive-thru isn’t an option. A cooler must be packed with fresh fruits, veggies, nuts, etc. My son must also eat every three hours to prevent behavioral outbursts and violent episodes. Most weeks, we have two-five appointments. We school online with a public school that offers flexible hours in order to allow the children to get a proper education while managing all these medical appointments, migraines, meltdowns and so on.
Socialization has been a struggle, but has been getting better. It’s taken us awhile to meet new friends who understand and accept both our special needs children. Also, this has been the first year that my Asperger son, Connor, has been accepted by the neighborhood children. In previous years, they would go back into their homes if he came outside. Recently, a little boy who lives across the street saw Connor watering our flowers and asked if he could come over and play. Later that night, I walked over, crying, and thanked his mother, who is a teacher and has been very supportive of Connor’s diagnosis, for her son’s actions. Parenting special needs children is the hardest job I’ve ever had in my life. You have to find joy in every little way possible.
My own health has suffered greatly. The stress, not eating and not taking care of myself due to fatigue, time and money takes its toll. There are days that, due to chronic severe lower back pain and fibromyalgia, I crawl on my hands and knees through the house to care for the children.
I do not believe in very much TV viewing for children under 21. That said, pay $8 a month for Netflix, and put a lock on your bedroom door. Your marriage is worth it. My husband and I recently started playing poker after the kids go to bed. We relax, talk about all sorts of topics and enjoy each other’s company without paying $12-$20 an hour for a special needs childcare provider. He keeps score … which drives me crazy … but otherwise I really enjoy our time together. I recently went to a hair salon and had my gray professionally colored instead of the horrible ‘at home’ color jobs I’ve been doing for years. It’s a small indulgence for myself, and I feel like I look better for my husband. I also went to the thrift store and bought a few new tops, because I haven’t bought myself clothes in years. Through all of this, never forget that if you have the luxury of being married, the divorce rate for families with special needs children is estimated between 60-90 percent. My husband is a saint for not institutionalizing me, helping out with the children and staying in this family despite unbelievable odds. He deserves a wife who tries to make an effort.
A family member informed me a year ago when we received Connor’s autism diagnosis that, “There’s nothing wrong with that boy except your parenting. If you’d beat him more, he’d straighten right out. A week at my house would fix him.”
Two grandparents don’t believe either child has any medical conditions. The truth is … several years ago when Connor was a toddler, I did try spanking him. That’s how I was raised, and I just assumed he would “fall into line”. Never once did it help. It made him furious and sometimes violent. Last week, I had to lie to my now eight-year-old daughter about why two of her grandparents didn’t call, send a card or come to her birthday party. I told her they were flooded in and didn’t have electricity or phone. Thank goodness she doesn’t check the weather and realize how severely dry everything is.
There are some who say, “who are you to homeschool, medicate and take your children to therapy?”
I’m going to be perfectly honest. I’m bipolar, OCD and diagnosed with general anxiety disorder. I’ve also been told to be evaluated for ADD and Asperger’s myself. I have the right to make these decisions because I’ve been that child struggling to control their unbelievably strong anger, unable to concentrate and daydreaming, and having wild mood swings. My childhood was very difficult and included a lot of bullying at school and conflicts at home. Last June, my son stood in the middle of the living room screaming, crying and shouting, “Please get me help, Mom. I know I’m different, and I can’t control my anger. I want help, please!”
My children have a right to as much of a decent childhood as any other, and I will do everything in my power to give them that. To those who doubt my right, I ask them who are they to question someone who has been in the very position my children are now.
I don’t have the “perfect” answer for family issues about disagreements about diagnosis or not being invited to holiday dinners anymore due to your child’s behavior. I can tell you our philosophy. Remove the negative people from your life, invite the ones who love your child for who they are and move on. It’s the only way we’ve found any peace. I can also tell you that some counties offer support services and respite care. I hate to sound so negative … but good luck with that. Funds are extremely limited, there are huge waiting lists and despite the fact we pay the same taxes as everyone else, we qualify for absolutely nothing.
Let’s discuss finances for a moment. I’m going to be embarrassingly honest. We are flat broke and have medical bills coming out of our ears. My husband’s income excludes us from any services, but they don’t take into account that we are still paying off bills from my breast cancer 12 years ago. Our current medical bills keep piling up and getting turned into collections. As an Asperger child, my son is extremely interested in technology. I would give one of my kidneys to be able to provide him with an iPad and apps specifically for autism and Asperger’s.
As far as my stress, I am not the perfect mother. There are some of those women I’ve met at support groups who try to pass that image off. They are flat-out liars. Sometimes I raise my voice at my autistic son when he doesn’t deserve it. My laundry gets piled so high I don’t know how we don’t go naked. Some days when my husband comes home from work, I take my iTouch with my Kindle app to the master bedroom, lock the door and tell everyone, “Mom’s off duty”. If you are the caregiver of special needs children, love them. Love yourself and don’t judge yourself or anyone else. If you are doing the best you can, seeking help and actively keeping up with the research on your child’s condition(s) — you are a success in my book. Seek out a support group that you feel comfortable with. Go out with friends for a “Girl’s Night Out”. I am proud to say I see my own counselor several times a month. I get to vent, and she helps me understand these emotions along with suggestions for dealing with all my stress and anxiety. There is a taboo on seeking counseling and mental health treatment. It’s ridiculous. Mental health is a physical health problem. It’s an imbalance of chemicals in your brain. It’s no different than cancer, diabetes or arthritis. Take care of yourself to be a better mother, wife, sister, friend, etc.
Never give up hope! Remember that we are raising the future leaders and inventors of this world. No one famous was ever ‘normal’.
I want to thank both my new and established readers. I’ve received some very touching emails and posts. Please seek out my Facebook page “I did not sign up for this special needs parenting”. You can also contact me at: firstname.lastname@example.org . Follow me on Twitter at: @JhobbsSaunders.