Choosing to Parent a Child With Special Needs
My son Leo is at his first-ever week-long camp for kids with special needs. He is thrilled to be there, and shrugged off my flurry of worried-mom departing hugs and kisses in favor of bouncing on his bed and holding hands with his aide: a young man who volunteered to spend his summer being a cheerleader, best friend, and 24/7 caregiver for kids who couldn't attend camp without 1:1 aides like him.
What an astounding young man. And even more amazing: the camp was overrun with kind, helpful, energetic young adults just like him, blazingly positive people dedicated to their campers having the best week ever ever ever.
Those camp aides & counselors are woven from the same fiber as Byrd and Melanie Billings, the Florida couple whose murder horrified the country twice over: first because of the murder itself, and then more so because they were the adoptive parents of twelve children, many of whom had special needs.
My son's aide and the Billingses chose to work with, live with, love kids like my son. Because I myself am not a terribly altruistic soul, I am fascinated by people who embody this kind of self-surpassing generosity of spirit. I wanted to know: Who are they, and what kind of journey or personality underlies their decision to include children with special needs in their lives?
So I asked one of them outright. TJ and his partner are the foster fathers of a teenage boy unrestricted by his multiple diagnoses. Here's what TJ had to say:
SR: Tell us about your child.
TJ: JP, as I’ll call him, is a 16 year old deaf Pacific Islander who is very physically and theatrically talented, and clearly possessed of several kinds of intelligence. He has reached the national level in his chosen sport, and recently took over at the last minute as emcee for his school’s graduation program.
He also has some clinical diagnoses in addition to his deafness, including Attention Deficit Hyperactivity Disorder, Oppositional Defiant Disorder and Post-Traumatic Stress Syndrome, and attachment issues that are considered problematic but not enough for a diagnosis of Reactive Attachment Disorder. These diagnoses come as no surprise, if the information I’ve gleaned from the professionals involved in his life is true; according to files, JP was abandoned by three sets of relatives (parents, grandparents, and aunt/uncle) before landing in the foster system. He was then placed with a foster family for six years, toward the end of which he was deemed "dangerous and disruptive" to the family.
SR: You chose to parent a child with special needs. Was this a conscious decision, or did you have a connection with your specific child?
TJ: Both…I have been a teacher at JP’s school since before he arrived, and have coached him in his sport since 2004. I served as his homeroom and math teacher, as well as his IEP care coordinator, when he first entered middle school, and then more recently served as his homeroom/science/study skills/Accelerated Reader teacher and IEP Care Coordinator as he entered high school (this was all scheduled prior to our being approached to become his foster father … this situation has been both a positive and a negative, for the both of us, as he and I were like white on rice 24/7 for the first several months of his life with us).
But I always had figured that, as a gay man who would likely parent children already born to someone else, I would probably be parenting deaf kids due to my rather specific background and skill sets.
SR: Tell us about some of the joys, large or small, that you hadn't anticipated.
TJ: Hands down, top joy was that he got us Father’s day cards and a gift. We did not expect that from a sixteen year-old who we had been counseled would likely think of us as "those guys I live with and who kinda help me out."
Can you tell us about some of the federal, state, and local guidelines that helped or hampered the process?
TJ: Well, we were actually approached by the state to foster JP, so we are a special case. We were told we would be "Child-Specific" foster parents, due to our prior relationship with JP. Regardless of this fact, we had plenty of hoops to jump through:
- We needed to get physical examinations and TB tests to prove we were physically fit enough to care for him.
- We had to take foster parenting classes before being licensed to take him (although "temporary" monthly licenses were granted, ad nauseum in our opinion, since we took our classes prior to his move-in, from January until June, when we were finally approved).
- We needed to find friends who would be willing to commit to the State that they would care for him short term or long term, just in case.
- We were required to participate in at least two weeks of Multi-Systemic Therapy, which is typically a program to help dysfunctional families change their problem behaviors to more adaptive ones, prior to JP’s moving in (we found this amusing, since we did not, and do not, consider ourselves dysfunctional -- however, the seriousness of his past behavior issues caused his team to feel this was a wise prophylactic move).
- We needed to have several inspections of our home and several interviews and visitations by licensing Social Workers, most of which were difficult to schedule for two full-time working people since the State agents wanted to meet during business hours.
I know all this is as per usual, but it made the process annoyingly slow-moving, since my partner and I were so very on top of our responsibilities regarding JP and what we needed to do to facilitate his move-in. We also found out that things we purchased for him specifically (i.e., a light alarm system to alert him to smoke alarms, telephones ringing, and the doorbell ringing) would not be reimbursed if the non-deaf-involved professionals at the state office did not deem them sufficiently necessary.
SR: Did your partner require some persuasion dive into parenting, or was he on board from the start?
TJ: We actually had made a New Year’s Resolution in 2008 to expand our family with human members, and not just feline ones (the three of them already outnumbered us), despite my partner’s worries that he did not have great role models for parenting and that he did not want to "screw up" someone else's life. As we had not done much work to realize this goal during the first three-fourths of the year, it seemed serendipitous when we were approached.
My partner has also known JP for several years, and we both had privately agreed that if he ever needed us in his life in parental roles, we’d be there. When the hypothetical became real, he agreed right away. And, as I jokingly reassured him, "This is one kid we can’t possibly screw up any more than he has already been."
Your child came to live with you as a teenager. Did you get special training for accommodating the extra complications of suddenly having a teenager in your house?
TJ: Well, I mentioned above that we had the foster parenting classes and the Multi-Systemic Therapy. The MST was probably the closest thing to special training we had -- since it could not address dysfunction in the family, as JP had not yet moved in, it became more a support system in helping us establish family routines, plan appropriate discipline/consequences for the apparently inevitable behavior issues that JP would bring with him, and brainstorm the "what-ifs" that befall every family (i.e., "What will you do if JP stays out past curfew?").
My own 20-year career as a coach in JP's sport and 10-year career as a teacher have provided "special training" insofar as giving me a great deal of practice designing proactive systems of discipline for populations of very different individuals, matching consequences to behaviors, individualizing the way I relate to individuals, and understanding the ups and downs of teenagers typical and not-so typical.
SR: What would you say to people who are hesitant about choosing to parent children with special needs, or older children?
TJ: "To each his/her own!" If you don’t think you are prepared to handle children with special needs, or older children, then don’t put yourself in a position to do so. On the other hand, if you feel some nagging in the nether regions of your conscience when you encounter this question, then put yourself out there to gain experiences to help you really know whether or not you can handle it.
I don’t think of JP’s deafness as a special need per se, because I had voluntarily entered a relationship with a deaf man when I was a college student, became fluent in ASL and deeply involved with the Deaf [capitalization intentional, to connote the cultural identification and not the adjective of individuals who do not hear] community, and so have perspective of deafness as a cultural and linguistic difference rather than the commonly held view of deafness as a pathological condition.
On the other hand, I definitely was hesitant about his diagnoses with Oppositional-Defiant Disorder and, more particularly, his recognized attachment issues. However, in preparation the arrival of our 15-year-old bundle of joy, I did a great deal of research of the literature, and soon felt that I had the wherewithal to handle whatever might come our way with JP. It doesn’t hurt that I have an enormous amount of belief in my own intelligence and abilities, as well as those of my partner, and of the synergy we create as a team. Yeah, sometimes a big ego helps.
More on choosing to parent children with special needs, and on Deaf culture, identity, and parenting:
- DeafMom: A Deaf Mom Shares Her World
- Terri Mauro: Five Ways Adopting Children With Special Needs Is Like a Horror Movie
- McKenna of TheMomCrowd: Adopting a Child With Down Syndrome
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