Friday, October 4, 2013
PARENTING: Pity the Parents of Special Needs Children
Having a special needs (SN) child brings with it many of the typical joys of parenting, but let’s not kid ourselves into believing that there aren’t major drawbacks for the parents. As a psychologist and parent of a special needs child of my own, I have detected several negative effects which I’ll describe in detail below.
To begin, there is no strict or clear definition of what it means for a child to have “special needs.” Many people think of special needs as necessarily involving a serious or chronic medical condition. When it comes to these parents, it is clear that the additional demands on parents of chronically ill children cause stress that affects the whole family (Cousino and colleagues, 2013). But chronic illnesses are not the only type of special needs that children have. I am focusing on children with special emotional needs, including children who have a psychiatric diagnosis. I'm referring to the parents of children with severe cases of depression or other mood disorders, ADHD, psychosis, autism, and other emotional and/or cognitive disorders.
Previous research has not done enough to educate us about the effects on parents of having a child with SN. Among the research that does exist, it is often diagnosis-specific. For example, Johnston and Mash (2005) concluded that the presence of a child with ADHD results in increased problems with family and marital functioning (hello!), disrupted parent-child relationships, reduced parenting efficacy, and increased levels of parent stress. Some research exists that is more general. According to the National Mental Health Association and the Federation of Families for Children’s Mental Health (1993), parents who are caring for children with mental illness find it extremely difficult to get their own mental health needs met while trying to meet the mental health needs of their child.
My knowledge and understanding of what it's like to parent a SN was previously restricted to textbooks, journal articles, and ultimately working with these parents as their therapist. I have learned so much more because of my personal - not professional - experience. As a psychologist, I have to watch my tendency to practice psychology at home. In other words, I try not to treat my kids like my clients! The problem, however, is that my six-year old son has pronounced special emotional needs and the roller-coaster ride that is each day at home practically begs for a psychological intervention.
A little background: My son was two years old when he was taken away from his mother, and the last day he was in her care, she broke his arm while high on methamphetamine. For the next year or so, he lived in a foster home until he found the last stop on the train: adoption by my partner and me two years ago.
When you have a SN child - biological, adopted or otherwise - there's next to no true preparation. I was a fool to think that being a shrink would make my experience parenting any easier or better informed than any other parent. When my social worker told me that she'd found a little boy they thought would be a good fit for my family, the social worker didn’t describe my son accurately. We were told that he had no behavioral problems or significant mental health symptoms. Quickly we began to see that my son had almost no ability to self-regulate; he experienced major mood shifts with extreme anger outbursts; and he got in trouble frequently at school due to his provoking other students and his inability to focus. (Of course, if any of us went through the same things he did, we’d probably have those problems, too.)
Nothing could have prepared me for the anger my son carried. Fast forwarding to today, I am better versed in handling my son with his unique set of emotional issues, and my family has set up a helpful support group of friends and professionals who are deeply involved in the care for my son. My son is going to be okay – I know it.
As a part of my journey the past couple of years, I’ve reflected a lot on what the effect of having special needs kids is on parents - because there is a definite effect, and I wish I could say it's all good. Overall, what happens to them? Are they stronger, better people? Are they more depressed? Part one of this article will break down the negative effects, and part two will highlight the positives.
The Negative Effects
1. Parents of SN kids will inevitably resent their child at some point.
All parents will have an occasional bad day and question why they had kids in the first place. Yet for the parents of kids with SN, these parents will have deeper resentment - even if those resenting moments last only ten or twenty seconds. I often hear people reciting the Einstein quote about the definition of insanity (doing the same thing over and over but expecting a different result), and I believe this definition helps to explain one of the central challenges of having SN kids. See, parents’ chief motivation is to teach the growing child how to one day care for himself or herself on her own. Accordingly, parents invest thousands of hours in teaching children everything from how to hold a pencil correctly to how to think about others’ feelings.
With SN children, however, they often require that you teach – and reteach and reteach – some of the same lessons until the children learn. What happens when the student doesn’t learn? The parent understandably feels frustrated. Parents need positive reinforcement to keep chugging along, but they don’t get the reinforcement they need if the child doesn’t learn the lessons. In this way, the parent’s experience leads to a sort of crisis of faith: Are my efforts making a difference? If not, where do I go from here?
2. The moods of the parents of SN kids suffer in a major way because the daily home environment is so demanding.
Elgar and colleagues (2004) found that being the mother of a child with mental illness is associated with high levels of distress and depression. In addition, Barkley and colleagues (1992) found that mothers of children with mental illness were two to three times more likely to be depressed than mothers of healthy children. Well, this research comes as no surprise to me. Half the time, I don’t know if I’m exhausted, frustrated or depressed – I just know I’m not myself. When you are a working adult without kids, you have the ability to come home after work and unwind. When you work and come home to kids, there’s always work to do. But when you come home to SN kids, there’s rarely a moment of peace until it’s time for bed - if you're lucky.
Children with special emotional needs often don’t learn self-sufficiency skills the way other children do. Part of what consists of my son’s special needs includes his trouble initiating solitary projects or doing almost anything on his own. Because he lacked much of the guidance any child needs to thrive early on in life (meaning, the first few years), he craves attention, physical affection, and visual mirroring. What do I mean by the last term? I’ll give you an example: “Will you watch me play with my car?” he asks regularly. It’s a major strength in my son that he is so aware of some of his most primitive needs, and it’s an added strength that he verbally asserts himself. On the other hand, it can be extremely draining to meet emotional needs which – I’ll be honest – often feel bottomless. What’s more, many times when I go out of my way to please him or meet a need, he ends up angry or tearful, and I seem to fail him. If you think it’s draining to meet the needs of a child who has such a vast arsenal of needs, imagine how you’d feel if at least half of your attempts to make that child happy were to end in tears – the child’s visible, yours hidden.
When people talk about how some children are draining, I always cringe because it feels critical and selfish. Yet the truth is that SN children are more draining than other children, leaving parents often too tired to figure out where to go to get their own emotional needs met. When I saw a child therapist recently who specializes in behavioral problems, I discussed my son and gave her examples of his behavior so that she could help me figure out the best interventions in such situations. She asked me a pretty basic therapeutic question (“So, who meets your needs?”) for which I had no good answer. “Your partner?” she suggested. I explained that he was so burnt out, too, that I often don’t lean on him because he is so burdened already. Long story short, I kept going back to the therapist.
3. You get angry and unleash your frustration on people who don't deserve it.
I will come out of the closet as an overwhelmed parent and confess one especially ugly consequence of having so many parenting demands: I have detected a pattern where I lose patience and get angry with the wrong people. (And, no, I don't know who the 'right' people are.) I have noticed this trend the most on the telephone where I'm, say, calling an airline with some questions and I lose my cool during the call. It sure is easy to lose your cool in such an anonymous medium as a phone call, and I have had to put my behavior on notice and accept that I need to find better outlets for my negative feelings.
4. Your romantic relationship - if you even have time for one - will suffer severe bruises.
My sister recently asked how my relationship with my partner was going, and I thought about saying something flip: “While your kids are really young, parents should basically press ‘Pause’ on the relationship and agree to come back to it in five years or so." The relationship suffers most in families with SN children because the parents have been pushed to their limits but simultaneously must avoid expressing negative thoughts or feelings to the child who is causing the frustration. Instead, who’s there to snap at, because you can’t snap at your SN child? You guessed it: your partner. Though we all agree it should never happen, parents of SN children often take out their frustrations on each other.
5. You figure out who your real friends are quickly.
When you have a SN child, you need a lot of help: psychotherapists, tutors, medical specialists, and the list goes on. Some parents are lucky in that they have family who are available and interested in helping care for the children; others feel isolated and alone because they don’t have the supports they need. It’s natural to confide in friends about the details of your daily life, particularly when you’re upset and you need some emotional support. I have been amazed since having children about the number of friends I have who have never expressed any interest in meeting my children – or even mention the fact that I have them. Now, I’m not one of those people who feels that my children should be the center of everyone’s universe. I don’t need my friends to be highly interested in my kids because I’m interested in them enough already. But when it comes to having a free couple of hours to myself, who am I going to reach out to first: my friend who occasionally asks about my kids and offers much-needed social support, or someone who doesn’t? As the parent of a SN child, I need to get my emotional needs met, too, so I look for warmth and empathy from my friends more than ever before.
6. Your memory seems noticeably impaired at times, and you get sicker more frequently, too.
When you have a SN child, your child has more appointments than a White House secretary could probably manage. Your child has more therapists, specialists and aides than most parents would dream of. The list of appointments with specialists, of course, does not include school, sports practices or the other extracurricular activities in which the child may participate. In addition to all the names, dates, appointments, and so forth I must keep track of for my career (Come on, I work a lot!), I have to keep track of the staff of people who are involved in the care for my child. Because a brain can only accommodate so much information at a time, I accept that I can only mentally recall a fraction of what I could recall from my memory in the past. If my forehead could read a computerized message, it would clearly read, “System Down.”
Yet it's not only your memory that gets impaired. For example, Wetherell and colleagues found that the parents of autistic children get sicker, too. Specifically, the 2012 study found that the parents of children with autism were more likely to get common ailments such as colds, coughs and headaches as a direct result of the increased stresses linked to their caretaking responsibilities.
7. You spend a lot of time feeling confused as you try to understand your child.
In my almost 40 years on earth, I had never seen anger in a child the way I saw anger with my son. I was overwhelmed. I will never fully understand the depth of his anger because I have not had his life or lived inside his skin. I spent the first two years with him in a state of massive confusion, feeling as if there were landmines everywhere and that my son would try to start arguments because he liked it. The truth, of course, is that he doesn’t like it the way some people like, say, soccer or water polo, but he needs it. A therapist I started seeing a few months ago to help me navigate specific antagonistic situations with him said succinctly, “There’s not enough aggression in your house for him.” In other words, he seeks out negative, antagonistic interactions because it is familiar and because I believe his brain – hyperactive, intense, disorganized – searches the environment for excessive stimulation. In a peaceful house, he often feels lost and confused, while his parents feel confused, too. In this way, the interpersonal dynamic between parent and SN child is jeopardized, because each person is trying to figure out the motives of the other. If everyone is looking over his or her shoulder, no one is able to really trust – and, in turn, relax. Everyone is on high-alert all the time.
Another factor that makes life more complicated for parents of children with SN is that the special needs rarely get met by the end of childhood, meaning that many of these children have trouble managing into their adult life - and this continues to impact the parents. One interesting study by Fingerman (2010) investigated the effect on parents’ well-being of having a grown child who has experienced significant life problems (e.g., trouble with the law, a substance abuse problem). The researchers found that having even one grown child with a significant life problem had a negative impact on the parents' mental health. Accordingly, it is important for parents to be realistic about the length of time they will need to make their children's emotional challenges a priority!
I have a magnet on my oven that provides a powerful reminder, especially on bad days where the parenting demands are greater than others. The magnet basically says that life is an experiment, and that you're better off having as many experiments as possible. Undoubtedly, there are definite negative effects on parents of caring for SN children, and these parents shouldn't be shy about sharing negative thoughts and feelings. There is way too much pressure in our culture to pretend that parenting is a total pleasure and that good parents love each and every minute of it. That type of pressure simply adds to the stress the parents of SN kids have, so let's all agree to be less absolutist when talking about the experience of parenting.
Overall, parenting brings a mix of experiences, as does life, in general. It's really not positive or negative - it's too wild a journey to be neatly defined by a word or two. I can tell you that I feel strongly about the value of parenting, especially when you are adopting a child who didn't have a home. My SN son deserves so much, as do all the other SN children out there who have an emotional, developmental or medical disability. I also feel strongly that the parents of these children deserve a lot, too, but they often have to delay the gratification of their own most basic needs because there's someone who understandably needs it more.
In part two of this essay, I will share the positive effects I have detected, and some of them could not have surprised me more!
American Psychological Association (2010, August 15). Parents' mental health more likely to suffer when a grown child struggles. ScienceDaily. Retrieved October 3, 2013, from http://www.sciencedaily.com¬ /releases/2010/08/100812161926.htm
Barkley RA, Anastopoulos AD, Guevremont DC, Fletcher KE. Adolescents with attention deficit hyperactivity disorder: Mother-adolescent interactions, family beliefs and conflicts, and maternal psychopathology. Journal of Abnormal Child Psychology. 1992;20(3):263–288.
Case Western Reserve University (2013, September 18). Researchers find what stresses parents with a chronically ill child. ScienceDaily. Retrieved October 3, 2013, from http://www.sciencedaily.com/releases/2013/09/130918175559.htm
Elgar FJ, McGrath PJ, Waschbusch DA, Stewart AH, Curtis LJ. Mutual influences on maternal depression and child adjustment problems. Clinical Psychology Review. 2004;24(4):441–459.
National Mental Health Association. the Federation of Families for Children’s Mental Health All system’s failure: An examination of the results of neglecting the needs of children with serious emotional disturbance. NMHA; Washington, DC: 1993.
Northumbria University (2012, April 2). Parents of children with autism more likely to get common ailments. ScienceDaily. Retrieved October 2, 2013, from http://www.sciencedaily.com /releases/2012/04/120402093746.htm