Rachel Penn Hannah
To work or not to work? Unfortunately, that is not the question. I have to work. Having two kids in a tiny, alternative high school that can better address their learning issues is expensive. Plus I have a younger child in middle school who might need private school in the future. I have been fortunate to be able to work half time, 12 hours one day and 8 hours the next work day. My husband and I both have professional careers, but his more than full-time hard work allows me to work less so that I can be home with the kids on most days. It sounds like a luxury (and compared to many situations it is), but with three kids with learning issues plus adolescent issues and one of these wonderful children with a mood disorder diagnosis even this work situation can seem to be too much.
I have recently taken a family medical leave to care for my son. He is 16 and is struggling with some substance abuse issues. When my son was in sixth grade the psychiatrist tried to find an ADD medication that my son could tolerate, but was unsuccessful. She then predicted that drug and alcohol use could be an issue in the future. The neurologist that treated my boy after a traumatic brain injury when he was 14 warned that his brain would now be more vulnerable and that drug seeking behaviors often follow neurological trauma. And the reality of these risks came to bear on the first day of summer, June 10, this year. My son took ecstasy, called us to come get him because he was having a bad reaction, and had to be rushed to the emergency room for treatment. Thankfully, after several hours with IV fluids and other attempts at medical stabilization he was okay.
After this frightening incident, I decided to take time off from work to be involved in treatment for my son’s drug seeking tendencies. I have driven him to countless NA meetings, sitting outside while he engaged with concepts of recovery and abstinence. I have gone with him and my husband to family therapy and taken him to individual therapy. I have been at home supervising and spending many valuable nuggets of time with my son just hanging out, talking and laughing. I arranged many activities for my son all of which brought out his best qualities, all of which gave him great feedback, the kind he has not historically gotten at school. We even hosted a German exchange student for three weeks to give my son a chance to mentor a younger brother type. All with great effort, but success.
I have now been on leave for about two months. I have gotten very little “done.” I thought I would exercise. I have not. I thought I would write every day. I have not. I thought my house would be cleaner. Not. But I have managed to be there COMPLETELY for my kids. I haven’t mentioned my sweet girls, Moody Judy and Mess Maker Patty, but I have also spent a lot of time with them. And the driving….did I mention the driving? I have done a lot of driving. We have had lots of teens and tweens over which has been a deliberate and fulfilling undertaking.
As far as my son is concerned, I am quite proud of all of his hard work this summer. He amazed us with his growth in the areas insight and of talking about difficult subjects and working through conflict at home. But the work is not done. I knew that not using would not be a smooth path, that there would be ups and downs, but still felt unprepared when my son had a positive drug test (marijuana) this past weekend. When I confronted him even he said “Why would I do that, especially at such a delicate time?”, a time when he wanted so much to work toward more freedoms. That is a good question. Impulsivity comes to mind. An ADD brain on no medication comes to mind. We definitely need more help and are stepping up the program.
But I having been planning to return to work soon, mid-September. We need the money and our medical benefits are tied to my job.
Working outside of the home when you have high need kids sometimes feels impossible. I have done it for years, but what parents with neurotypical kids probably don’t understand is that managing the lives of children with special needs is a job in itself. This is a job on top of the normal parental duties. For example, my youngest daughter (who has ADHD plus) just started middle school last week. Much to our amazement, she went into the first day of school calm and poised, having put much thought and effort into her clothes and hair (we wondered if an alien had taken over our daughter). She woke up the first day with little effort and easily took her daily medicine (another miracle) and got on the bus to school. I walked back into my house with my warm cup of coffee and felt tremendous relief. She was also okay when I picked her up at the end of the school day.
However, the second day she was “sick” and did not go to school. I panicked a little bit, but reminded myself that sometimes kids are actually sick when they say they are. The day after that she returned to school, but for the next two days of school (Thursday and Friday) she was hell on wheels in the morning, defiant, obstinate about everything, but especially getting dressed and taking her medicine. We definitely did not make the bus on those days so drove her to school. When I picked her up in the afternoon she slammed the car door, did not under any circumstances want to talk about it, immediately started making harsh demands, and was (too put it mildly) “a total pill.”
Over the weekend our new middle schooler seemed to recover some. She started to spill some information and said her core teacher “hates her” and that “everyone else has a group” to sit with at lunch, not taking any solace in the amazing fact that she made a friend the very first day of school who also likes horses and has had lunch with her every day since. Her negative perceptions were coloring everything. Come Monday morning, it was as if my daughter’s self of two years ago had returned. She absolutely refused to go to school. Too many people there, too loud, backpacks knock into her in the hallway, she can’t remember where her classes are, and so on. “I am NOT going back to that school” she screamed at the top of her lungs.
In the mean time, my two teens were getting ready for their first day of high school amidst the chaos of little sister’s rage. I could not get my 11 year old to stop crying, to talk to me, to let me reassure her, to listen to me tell her that her feelings are normal, let alone to take her medication or get dressed. Time was ticking away and I needed to take my teens to school.
My husband with the incredibly demanding job stepped in just when he was supposed to walk out the door for work. I was about to cave, feeling cruel for forcing her into such a distressing situation. My husband, on the other hand, felt that she needed to go to school no matter what. After pep talks, tough love talks, distracting her with animal facts, and other techniques all of which he has perfected over the years, after her switching back and forth from screaming to crying several times, my husband, her dad (my hero at the moment), managed to get our daughter to school. Late. After a three hour meltdown. On the way to school, he agreed to take our daughter to see her horse. She got inside the paddock and talked to him for a few minutes, draping her body over the horse’s neck. Only then was Sarah off to school.
After I got home from taking my older two to school, I spent a couple of hours making phone calls and sending emails to various middle school staffers to get help with this issue. Then it was time to start pick-ups. The next morning we met with the vis principal, the school psychologist, the counselor, my daughter’s resource advocate, and had a wonderful meeting. They were all so sweet to Sarah and made it very clear that they were there to help her with school issues and that they want her there. At school. Sarah went from being overwhelmed to be the focus of a meeting with seven grown ups, to being visibly more relaxed by the end of the meeting. After she went off to class I expressed my gratitude toward the staff, left and cried tears of gratitude. Exhausted. My husband, who is a wonderful, engaged father, left the meeting and went to work. I, on the other hand, had to come home to get on the computer and phone to make arrangements for my son’s new level of drug treatment.
Today I went for a job interview. This would simply be a change in role, for the same medical center, but with slightly longer hours in the evening. I was interviewed my ten people who each held a predetermined list of questions. Most of the interviewers I know quite well, but the formality of the interview surprised me. A pediatrician who I have worked with for 8 years said “I have only one concern. I am wondering how it would be for you to be here one more evening a week instead of being home with your family?” Good question.
I feel like I have the perfect work-family balance for a parent with neurotypical children. But I don’t have these children. I have children who require a case manager and guess who that case manager is? Me. The amount of time I spend (sometimes at work because it is unavoidable) talking to school personnel, arranging doctors appointments, consulting with specialists, writing emails to teachers, etc. is unimaginable to those not in these shoes. It feels like too much to combine with outside employment. I have limited resources/energy and I wonder, am I alone? Do other parents of high need children feel the same way about working outside of the home or am I somehow a wimp?
After school the day of the interview (the day after the school intervention which was the day after the three hour meltdown) I picked up my two teens from high school. My daughter (age 14, freshman) was relaxed and happy. Her after school body language has already disappeared completely from last years glum irritable posture. She is in a better place at this small school. Then my son got in the car. “Mom. We have to talk.” He proceeded to tell me that he wants to leave the small private school and transfer back to the large public school we pulled him out last Fall. It was a crisis at the time and the change felt like a life saver. This is the same boy who has been saying “I can’t wait for school to start again” for the last two months of summer. He went on to tell me about how he wants to go to “a normal school” where he will be “challenged,” that there are too many problems at his current school.
Keeping a calm exterior, my mind started to spin and my stomach began to spasm. Can’t a mother catch a break? I thought. Even for just one single day? The ride home was fairly quiet. “What’s wrong mom?” my son asked. “Nothing,” I lie. “Just thinking” I say, about how he hated the public school, about how overwhelmed he was with the student population, about how he was unable to keep up with the work, about all the time and energy and money that has gone into his current school placement, about how I just might not be ready myself for another change…. especially as I head back to work.
I head back into the balancing act in about two and a half weeks. I don’t feel ready at all. I love my work and miss my colleagues, but don’t know where the energy will come from. It is not any one thing in my life that overwhelms me, but it all has a cumulative effect. If I have a tank of gas that powers all of my efforts in the areas of work and family, then I often find myself running on fumes when I try to do it all. I have accepted the fact that my kids need a lot and embrace this. And work demands a lot of me when I am there as well. Oh, and the kid issues don’t go away while I am at work. I often feel like I have double duty. And it is not only the time that one has to put into addressing their high need kid’s needs, it is also the emotional output, the worry, the brainstorming, the preoccupation and problem solving. As with many aspects of parenting high need kids, this is something I don’t try to explain to people because until you have lived it it is difficult to get. However, these challenges must be common for parents of high need kids and a little dialog amongst us about it might be good for us all.