It’s Mother’s Day 2017 and I’m compelled to reach out to the mothers out there whose journey as a mother hasn’t been what they expected, hasn’t been easy, faced with not only the normal trials and tribulations of nurturing, growing and developing a productive member of society — but also all the extra sh_t that society, social media, self-imposed and externally-imposed guilt and the ever pounding “don’t screw this up” voice in their head. I preface this writing with a blanket apology to moms and others that don’t think of special needs should be a separate category. I do.
Dear moms of kids with special needs:
I know that as long as you can remember, you had an image in your mind of what it would be like to have a baby, a child that looks like you, or that crinkles their nose at certain foods, or that gently grabs your hand at scary movies or at the crosswalks. I know that you planned to change your life completely when your baby came along and couldn’t wait to savor all of the milestones that came along: first smile, first taste of “solid” food, first word, first “Mama,” first step, first day of school. What you didn’t plan for were the long hours you spent, bleary eyed and anxious, looking up exactly what are the symptoms of various disorders. Did lack of eye contact at two mean that your child had Autism, or that you didn’t hold him enough, or that your work-hours were too long and your priorities were all screwed up?
My eyes well up as yours do, when you describe the teacher in preschool that hinted, not so subtly, that you really should consider medication at this point — or “things” may get worse for your child. My heart skips a beat when you don’t have the words to describe what it’s like to have all the urgent care clinics preprogrammed in your GPS, since your child has fallen in the 2-year-old room and has needed stiches twice in six months. You wonder where are the teachers looking? Back to the internet, back to advice from your well-meaning friends, back to visiting one physician after next. Your kid looks “normal” — but you certainly don’t feel like the culmination of your days is normal. One doctor says “don’t worry about it, he’ll grow out of it.” Another gives you books to read that clearly imply your priorities are screwed up and you need to be retrained. Another doctor gives you experimental, off-label medication to control impulsiveness, to control psychotic behavior, to control anxiety — nearly all of which are not covered by insurance. But you are desperate. You are a working mom. Before the mom part, you were a working individual. You entertain thoughts of quitting — but hell, you are more in control at work, able to get things done, able to quiet the horrible noise in your head about being a failure as a mom. Reality sets in as you balance your finances. Did that medication really cost $200 for 30 pills? Did that genetic testing really cost $4,800? Did the only child-psychiatrist still taking on new patients just increase her prices (not covered by insurance) to $240 for a 20-minute visit — which she insists needs to be kept up every 2 weeks?
My stomach turns for you when you say that you have more than one child and that the other child(ren) you have are “normal.” You want to parade them around the store or church or wherever your special needs child has caused a scene and brought you to your knees — to show that it’s NOT due to bad-parenting. You laugh out loud when you take yet another survey, to assess your child — just to get on to the 2.5-year waitlist to get an “official” diagnosis of autism — when you come to the question of, “Does your child’s behavior affect your family’s social interactions?” Oh, you mean — how many years has it been since you’ve taken your kids out for a meal, because you were exhausted from work, from life — and just wanted to have a nice family night out? Yes, you said years. Or, how many baby-sitters have told you, “I’m no longer baby-sitting,” after just three hours with your kids? Yeah, it’s affecting your life.
I want to hug you tightly when you tell me about your superhuman ability to compartmentalize when you go to work every morning. Because, let’s face it — although we’ve come a long way at accepting and even expecting some level of authenticity from our employees and bosses, even the most sympathetic environment can’t withstand the trauma that a mother feels daily, when she leaves her child whaling at the school entrance, hoping, praying that her child can make it to at least lunch before she gets the “call” — so that she can make it through that important meeting and still have a job to come to, so that she can pay those bills. Then the cycle starts over the next day.
You sympathize politely when you exchange mom-stories at work and your peers lament about the “second half” of their working day … picking up kids, feeding them and getting them to bed. Your mind quickly goes to the third and fourth half of your working day, being berated for 20 minutes by the school administrator — asking if you’d considered the school down the road. You know, the one that has environment more “suited” for your child. You don’t say it then — but yes, you’ve considered that school and the other five schools like it. You took your lunch just that day to visit one. The kids looked overmedicated, sedated actually, and you weren’t able to hold back the tears before you left the building. Or, the school that charged $30,000 per year, ran 9am-4pm, with no after-care and with summers off? You work 8am to 6pm, all year. Yes, you have considered it all. You’ve jumped thorough every hoop, you’ve let every well-meaning non-qualified “professional” give advice, you’ve considered many, many options. You’ve cried. You’ve screamed — at your spouse, at your child, at yourself, at life. You’ve financially modeled all the alternatives and still, you are met with complexities and complications, with self-talk and society’s pressure, by well-wishers and judgmental busy-bodies, with predatory practitioners, apathetic pencil pushers — and most of all, people that just don’t get it.
The pressure to keep up with it all and only show your “good” side is enormous and seems to be getting worse. You’ll have to choose the problems you allow into your life — that’s true for moms, dads and everyone. When you are running on empty, when you give it all away to your family, to your company, to maintaining the story that you have it all together, you don’t have the time to truly dissect what you can and cannot affect. What has a real chance of improving your family’s and your situation. Here is just one mom’s simplified version of how to start that process.
1) Spend one on one time with your child. This one is both simple and hard. It’s hard to bottle your disappointment (in yourself, in your circumstances), but your child has various strengths — that are probably covered up by anxiety of trying to keep it together, of battling bullies all day, of not being able to do things that other kids naturally do. Find out what makes them tick. One-on-one time, regularly, with expectations on pause, has been a life-changing activity at our home.
2) Evaluate all of the people, doctors, groups, books, websites that you have let into your life. Purge most of them after asking: What is their track-record with my family? After a session, or after trying something out — did it work for your child? If the answer isn’t a solid YES, put it on pause or end the relationship. It’s very easy to add therapists, medication, classes — harder to purge.
3) Advocate for your child — but only where it counts. Learn about the IEP process and other benefits available to your child — as early as you can. Early intervention, regular evaluation and revision can make a significant impact on the path your child will be on for years to come.
4) Consider the culture of your company. Where appropriate, let others know your situation — in a professional way, offering ways that you can carry your share of the load, perhaps with some flexibility. If your culture is nonconductive to this, really consider the long-term pluses and minuses of staying there.
5) Simplify your life. It’s easy to buy things and more things for retail therapy. It’s easy to get trapped in the “I deserve it” story. You work hard and it’s challenging and at times draining to have a child with special needs. In my experience, less stuff, smaller home, less dependence on my income lifted a great deal of pressure off of me — and I was able to channel that energy back into my family.
6) Give yourself some grace. If you lose your health due to lack of sleep, poor eating and lack of exercise, rest, mental stimulation — you are no good to anyone else. It takes a strong and healthy version of you to navigate this path.
This was a personal piece, but I hope that it helps just one mother get some perspective. Last year, I left my job and started my own business, for a variety of reasons. A key reason was that things inside my family were strenuous and getting worse. Since then, I’ve really tried to get to know both of my boys better. I’ve tried to pick them up early, to spend time snuggling with them, to do the things that they enjoy and be fully present. The note pictured above is from my 7-year old son with Asperger’s. After 6 ½ years of never hearing my son tell me he loved me, of him being an irritable, explosive kid — in a new house, in a new school, with a newly-improved mom and family environment, he is becoming a loving (but very much still quirky) kid. I wish each of you the best in your journey. You are not alone.
Cindi Basenspiler is a certified coach, providing leadership and success coaching to individuals facing their biggest challenges. Customized programs hold each client accountable for forming strong systems, processes and habits. Are you considering hiring a coach to help you navigate a challenge, to become a better you? To get more information, visit her website www.CindiBasenspiler.com
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