This week has been particularly difficult for one of my support group members. We're all parents of difficult kids and we meet to discuss ways to deal with tough situations as well as to support each other. But one mom has been particularly difficult recently and the group is collectively frustrated by her behavior.
Her daughter has an extremely rare genetic disorder called Smith-Magenis Syndrome. Essentially there is missing genetic material on chromosome 17, and this causes the following characteristics:
- Distinct facial features: brachycephaly (short wide head), mid-face hypoplasia, prominent forehead, epicanthal folds, broad nasal bridge, prognathism (protruding jaw), and ear anomalies
- Brachydactyly (short fingers and toes)
- Short stature
- Hoarse, deep voice
- Speech delay
- Learning disability
- Mental retardation (varying degrees, but have IQ’s typically in the 50-60 range)
- Low muscle tone and/or feeding problems in infancy
- Eye problems
- Sleep disturbances
- Insensitivity to pain
- Behavioral problems: hyperactivity; head banging; hand/nail biting; skin picking; pulling off fingernails and/or toenails; explosive outbursts; tantrums; destructive and aggressive behavior; excitability; arm hugging/hand squeezing when excited
- Engaging and endearing personalities
Note: Not every individual has all the characteristics, however.
This child is a teenager and because of her explosive behavior, she has not been in school in two years. TWO YEARS. At first it was because she couldn't handle the public schools and they couldn't handle her. But as time went on, more and more of the problem was of the mother herself. She's a lovely woman, but she's gone beyond enabling her daughter and has now entered the realm of disabling her. She just can't handle the pressure of having such a special needs child, she doesn't know how to seek out help, and she takes every rejection personally. Her daughter interviews at programs, but she has terrible anxiety and aggressive behaviors and the schools usually outright refuse her. At this point, because the school system has been out of compliance for 2 years when it comes to educating this child, they are willing to spend $250,000/year to send her to a special school in Pennsylvania for Smith-Magenis kids.
The mother won't even consider it. She won't even talk about it. Why? Because the school is too far away. So instead of providing her daughter with a tailor made education, fully paid for by her town, that is just for kids with her particular genetic anomaly, the mother continues to keep the child home and out of school.
Additionally, another child in the family is getting married next week, and the mother can't seem to find a place for her daughter to stay, because she can't come to the wedding due to her behavior issues. She has not yet told her daughter she won't be coming to the wedding, nor has she found care that is appropriate for her daughter. At our last meeting we spent the ENTIRE 2.5 hours discussing this situation. Every member of our group agrees that she needs to put her daughter into the hospital for the weekend, because it is the ONLY safe environment. The mother is not willing to consider this and might miss the wedding to care for her daughter. We tried mightily to talk to her about the resentment this would cause for years to come, but it fell on deaf ears. We offered to come with her en-mass to the hospital for an intake. Nope. She just cannot seem to let this kid go, even for a weekend.
The thing is, the entire family is kept hostage because of this special needs child. The mother is in complete denial about how this is affecting her family members, never mind her daughter. This child is regressing more and more, and the mother refuses to get her help. We've gone so far as to tell her that the state will, at some point, step in and remove the child from her home because of her refusal to educate her, but she doesn't believe it.
This is, by far, the most frustrating situation I've ever worked on. Everyone in the group is frustrated, we want to make things better for the mom and the daughter, but the mom's stranglehold on control makes help virtually impossible. She needs respite from her daughter. That much is obvious. She's been doing this for years with little to no help from her husband or other family members. She also needs to acknowledge that she is not the end all and be all for her daughter, and that she's denying her daughter the possibility of learning how to be self-reliant.
This mom isn't the only parent I know who is in denial about their special needs kid. I think a lot of fathers just don't know how to handle the fact that their child isn't what they expected. They seem much more reluctant to recognize the problem and then work on getting help. Mostly you see Moms at the school meetings, psychiatrist meetings, etc. Mom is assigned as the caretaker, and dad pretends that nothing bad is happening. Moms search for the special programs while dad pretends that it's a college prep program.
As the mother of two special needs kids, I often bristle when I see parents in denial. Nobody is perfect, everyone is different, so why can't some parents accept that their child needs special accommodations? Why can't the accept that their special needs child will, at some point, need to be able to care for themselves as adults. Yes, it's scary to imagine my son trying to care for himself as an adult. He's obviously far from ready now at 15, but I work on it every single day with both of my kids. I make them learn how do transact with shopkeepers, how to return an item that they are not happy with, how to call to find out if the movie is indeed playing, how to advocate for themselves, and especially how to get their needs met when they're being screwed over.
Denying that your kid can make it outside your home isn't doing that child any favor. Every parent I know that has put their child in a residential program, be it for a week or for years, has learned the valuable lesson that there is only ONE mom, but there are many caretakers at residential programs. Never is a child dealing with a burned out wreck of a parent who has just lost the will to carry on. They instead have fresh-faced staff that are highly trained to work with them, and the ration of adult to child can be as high as 7:1. You can't get that at home.
You also can't get the kind of applied behavioral analysis at home that you can in a program. Or a schedule that is kept day in and day out with no deviations. Kids know what to expect in programs. They learn quickly that their good behavior earns them rewards while their negative behaviors keep them from participating in specials like field trips and movies. I don't care what kid of kid you have, and what their diagnosis is, kids need structure, and programs provide a structure that you cannot get at home. Only when a child has learned to control their behaviors, learned to 'take space' when they feel anger boiling up, learn to recognize their triggers, learn how to self-calm are they able to return to the home. Special kids need to be taught these things, and it does nobody any good to refuse to teach your child how to get along in society.
Now, if we could only impart this to our reluctant mom. Because she's really doing harm to this child at this point, as well as to her entire family and herself.