The Holiday Season: We had no breakdowns this holiday. Our daughter spent Christmas weekend with us and New Year’s with her apartment-mate and staff and all went swimmingly! Well, almost all. She did have a bit of a setback that confusing Monday post Christmas when transitioning back to her CRS (Continuous Residential Support) life and a bit of a stomach bug conspired to create some tense moments. The usual gifting issues arose when an appetite for a new laptop case set off continuous text messages, exhausting an already super-tired mom, and finalizing several days later in a desperate phone call to the Vera Bradley store at a mall an hour and a half away. Transitions, as all parents know, can take the most resourceful children down, and special needs children find the shift from parental abode to school, dorm or new home particularly unraveling, even when the “home” is only twenty minutes away. It isn’t loss or homesickness per se that dogs the process. Nope, it is change, readjustment and reorientation. We all know what that is like.
Current State of Daughter’s New Life: We are now beginning the sixth month since move-in August 1 and a new calendar year. The machinery of daily living is rolling along nicely, with three volunteer jobs, loads of social and physical opportunities, and relationships with staff and apartment-mate in fine working order. One issue looms down the road: medication. Our daughter’s professional team has witnessed the impact of anxiety and attention issues on our daughter’s functioning and requested that we, her parents, review the possible benefits of medication. The relationship between anxiety and attention is the chicken and egg question that no one has yet answered. The week prior to Christmas my husband and I met with an Ability Beyond Disability psychiatrist (my husband is himself one of their treating psychiatrists and the two men are colleagues) to review our daughter’s status. For many years our daughter has been medication-free and the interplay of meds such as Ritalin, Wellbutrin, and others introduces that slippery slope that we slid down years and years ago, beginning in kindergarten and terminating in late middle school. Most medications mute down her sparkling personality, and though she becomes more focused, rob our daughter of her bouncy spirit and quick wit, intolerable losses. Some led to crashing moods. When younger and her behaviors took a more dramatic form, giant temper tantrums and refusals to go out to social events, the price was necessary to pay. Not anymore. That’s my position.
The New York Times: I had sent an email to the team reviewing our daughter’s past trials with a variety of medications as preparation for the meeting. The behaviorist and the residential coordinator met with us and the ABD psychiatrist. Wisely our daughter was not invited, as this was just a stroll down the medication lane without any plan to prescribe. It was the morning of December 21. The discussion was useful but I grew impatient with some of the dialogue because I have at the tips of my fingers complete recall of what ensued whenever our daughter was visited upon by some chemical cocktail, and though the psychiatrists know the chemicals, I know the kid. New medications were discussed and no decision, or even a decision to make a decision, ensued. The next day the New York Times, in their series on the treatment of the developmentally disabled in New York State, published an article chronicling the sometimes abusive use of medication in various facilities around the state. I am providing the link to the article not because our daughter is currently at risk for such treatment. She is not, because I won’t let that happen nor do I think anyone wants that to happen. But because it is happening to others, and the potential evil, even when “good” is intended, for medication abuse of the intellectually disabled is heartbreakingly real.
War Horse: Coincidentally, our family went to see the movie “War Horse” over the holiday, and the corollary for me of animal abuse and the potential for abuse of the intellectually disabled, or children, who cannot “voice” their distress or when they do, are not understood or seen as the authorities they are on themselves, rendered me in a painful puddle of tears and ambivalent about recommending the movie to anyone prone to such reactions. Of our family of four, I alone left the theater gutted, with reddened nose and eyes. But that is what mothers are for, isn’t it? To feel for those less powerful than we, and do something useful with that feeling.
Historical Concerns: There is nothing new here about well-intentioned educators, vocational or residential staffers suggesting that our daughter’s performance at tasks might benefit from medication. The last evaluation from Riverview in the spring of 2011 unequivocally recommended that the family review medication options. And so we are. But I am wary and wise from experience. Who knows? Life is long. Daughter has matured. And new meds are always on the horizon.
Stay Tuned To 2012 Parenting Adult Special Needs: One Day At A Time
©Jill Edelman, M.S.W., L.C.S.W. 2012