Having a child with special needs puts a strain on the parents, and on their relationship with each other. It is not unusual for parents to dissolve their relationship over disputes about how to address the special needs of a child. The biggest dispute may be as to whether a child has special needs at all.
What follows is a scenario based on a number of actual cases with common elements. If you are a parent with a special needs child, and you are involved in a custody dispute, much of this may seem very familiar. Many judges who read this will recognize patterns that will remind them of cases they have had before them.
Regina and Silas, high school sweethearts and now both high-powered/high-income professionals, had been together for a dozen years when they finally decided to formalize their relationship and get married. They immediately tried to get pregnant, but things did not happen for them, even after three years of trying, and so they consulted with a fertility doctor, who recommended a number of costly approaches. After two more years and several attempts with various techniques, the couple decided to foster to adoption. This was how Belisario came into their lives.
The couple had been foster parents to a series of children and sibling groups of various ages, who after anywhere from six to eighteen months would successfully reunite with parents or family. After four years in the program, they received a newborn. Belisario’s birth mother was an addict, who had been pregnant at the time her two older children had been taken by Child Welfare Services due to neglect and endangerment. At birth, Belisario was taken too. Belisario’s father was never identified or found. Regina and Silas fostered the baby for a few months, and then the birth mother disappeared without a trace. When no relatives stepped forward seeking to adopt Belisario, Silas and Regina eagerly requested adoption of the baby.
“Belly” as his new parents lovingly called him, seemed to thrive in his adoptive home, but he exhibited some unusual traits. He didn’t smile when smiled at, was not responsive to the calling of his name, and he wouldn’t maintain eye contact. He displayed very picky eating, and showed aversion to bathing and cuddling. In playgroups, Belly focused on objects, didn’t babble, and moved away when another baby approached him.
The frequent and long tantrums were more alarming, and drew unwanted attention and judgement, but babies were expected to throw the odd fit, right? It was not until Belly started banging his head, hitting himself with objects, and screaming that Regina thought that maybe Belly should be evaluated. At the child’s one-year well-visit, Belly’s pediatrician, based on Regina’s report and her own observations, recommended that Belly be assessed for traits indicative of autism spectrum.
After the pediatrician’s recommendation, Silas and Regina discussed proceeding with evaluation, but Silas was resistant. He felt that Belly was fine, and that the kid would likely grow out of whatever phase he might be in. Regina perceived that Silas might need time to accept even the potential of diagnosis, and so she decided to give Silas that time. It was another nine months before Belly was at the pediatrician again for another visit, and this time, Silas was not present. During the previous nine months, Belly had gained no meaningful words, and was not really babbling or interacting spontaneously, and his tantrums had only gotten worse. In response to the pediatrician’s inquiry regarding the previously recommended evaluation, Regina admitted that she and Silas had not taken Belly to be assessed. Regina was reluctant to admit that the reason had been Silas’ resistance, so instead, she claimed that Belly had seemed to have been improving for a while, although “recently,” he seemed to be reverting to his old patterns. The pediatrician again strongly recommended evaluation.
Long-story short, Belly was found to be eligible for insurance coverage and Regional Center support (Early Start Program) based on a diagnosis of autism. Belly was recommended for ABA (Applied Behavior Analysis), OT (occupational therapy), and speech therapy, as well as other services. Regina was highly motivated to learn everything she could about autism spectrum, and to learn how to support her son in whatever way she could. Silas began to find reasons to stay out of the home for longer and longer periods, often overnight. Things did not improve when Regional Center confirmed Belly’s diagnosis at age three.
There were expenses on behalf of Belly, and not all were covered by insurance or Regional Center. These expenses, Silas left to Regina. Regina found that taking care of Belly without Silas’ assistance was a full-time job, and she had to leave her lucrative career. Weeks went by, and when Regina asked for help, Silas accused her of being mentally ill, saying he had read about Munchausen by proxy, where a parent would project false ailments upon a child. He said Regina had warped her entire identity around the child being “sick,” when really, she was the one who was sick. He demanded she get help for herself, as she was the one who needed it. Their lifestyle required both their incomes, he said. He declared that if she did not get herself into therapy, he would leave for good.
Regina knew the marriage was over. Now that she was unemployed, and with Belly’s bills mounting, Regina knew she needed financial assistance, so, with the help of the free court facilitator to fill out basic documents, she filed for divorce and requested a court order for child support and spousal support as well as an order that Silas pay half of Belly’s uncovered expenses. Silas hired an attorney and was advised that if Regina got majority custody of Belly, Silas would be on the hook for a lot of money, as California’s child support guideline was based on “time-share,” as well as income. So, Silas responded in court, demanding full custody on the grounds that Regina was mentally ill and that Belly’s diagnosis of autism was wrong.
Regina had plenty of documentation regarding Belly’s diagnosis as well as current supporting information from Belly’s therapists and ABA providers. On the other hand, Regina did not have the funds for an attorney and had no idea how to present documentation to a judge. She took advantage of free consultations with lawyers, but the lowest retainer she could find was $3000, and every lawyer with whom she consulted told her that Silas was likely to at least get 50% custody unless he was a drunk, a drug-abuser, violent, or guilty of molestation. No attorney could guarantee Regina that Silas might not get full custody, which terrified Regina, because she knew that if Silas got custody of Belly, Belly would be cut off from the supports and therapies he required.
Regina was terrified of losing custody, and she knew that Silas did not want to pay for Belly’s support, and so, she struck a deal with Silas. In exchange for having majority custody of Belly, she agreed to an unequal division of their joint property accumulated before and during marriage. She got one of the houses, as did he, but he also got three income-producing properties. He got to keep his entire retirement plan (although the portion earned during their over eleven years of marriage was subject to 50/50 division). She got to keep her retirement too, but with her being out of work, she knew she would be using it up long before she hit retirement age.
Although their marriage had been “long-term,” (longer than ten years in duration), Regina did not fight for spousal support. Silas had taken the position that Regina’s earning capacity was as good as his, and that she was voluntarily staying out of the work force. Based on imputing income to Regina at the same level as Silas, child support was calculated. The only reason Regina got anything at all was because her “timeshare” with Belly was greater than Silas’. Child support worked out to just a few hundred dollars per month. As to Belly’s uncovered expenses, it was agreed that Silas would be responsible for half so long as he was consulted in advance and gave consent to treatment. Silas insisted on having joint “legal” custody.
As to physical custody, it was agreed that Belly would live primarily with Regina, and Silas would have visitation on alternate weekends. When Belly was older, assuming Belisario progressed with therapy and support, Silas might get more visitation during holidays and school vacations.
The next three years passed with Silas minimally involved in Belly’s life. He would see Belly on alternate weekends, but he would not allow ABA providers or occupational therapists into his home. He never agreed to any of Belly’s support or therapies, and so, he never had to pay for any of them. Silas was doing very well economically while Regina ended up liquidating her retirement (paying substantial taxes and penalties) to survive and pay for Belly’s supports and therapies. From Regina’s perspective, her sacrifice was worth it. Belly was making substantial progress due to the relatively early and consistent interventions.
Then came the Regional Center’s re-evaluation of Belly, requested at the urging of his school, and to which Regina agreed (having no reason not to agree). Although the assessing psychologist was still able to identify a number of Belly’s challenges, the result of the evaluation was that Belly no longer qualified under the definition of “classic autism” as used by Regional Center (classic autism being just one of several trait-sets on the autism spectrum). Belly was still covered by insurance, but Regional Center denied further assistance.
When Regina’s money ran out, she sold her own home, so she could live off the proceeds, but she knew those funds would run out too, especially now that she had the added expense of rent. She felt she had no choice but to take Silas back to court. Again, she asked for Silas to contribute toward Belisario’s therapies and supports. She also asked for a modification of child support based on her actual income (zero). Again, Silas hired an attorney and responded by requesting full custody, claiming that Regina suffered from Munchausen by proxy. In support of his claim that Belly was fine, he attached the most-recent evaluation from Regional Center. He also claimed that Belly was a totally normal happy child at his home, and that Regina was just making up symptoms to attribute to Belly. Regina took some of her dwindling savings and hired an attorney as well.
The parties were referred to Family Court Services (FCS), where they met with a Child Custody Recommending Counselor (still commonly called a “mediator”) to try to reach an agreement as to custody. When they could not agree, the counselor made a written recommendation that custody remain the same.
Silas objected to FCS’ report, pointing out that the FCS session had been less than an hour (true), that the counselor had not reviewed the file (true), and that the counselor had not communicated with any collateral contacts (also true, because Silas, who had joint legal custody would not give consent for any collateral contacts such as ABA providers and the OT). FCS still had been (over Silas’ objection) able to review Child Welfare Services records (none) and contact Belly’s school (no response to the submitted fax questionnaire). Silas also complained that the counselor had not reviewed the most-recent Regional Center report (true, in fact, the counselor had not reviewed any records at all), and that the counselor’s recommendation was based solely on Regina’s word (true to a degree, but also based on Silas’ report that Belly was doing well under the current custodial arrangement).
When it came time for the hearing, the judge only had about ninety minutes to hear the matter. Prior to the hearing, Regina had lodged several binders of documents including ABA and OT reports, as well as records of IEP (Individualized Education Program) meetings. Silas had lodged the most-recent Regional Center report. The judge had not reviewed any of it, but instead, relied on the attorneys to present their exhibits for review during the hearing. There was simply no time. Opening statements took over half an hour (15+ minutes each), and closing arguments about the same. That left less than half an hour for the parties to actually present their evidence, which consisted primarily of each party telling his or her story. Silas claimed that Belly was a perfectly normal, healthy, happy little boy, and that any symptoms he allegedly displayed happened only on Regina’s time. Regina admitted that Belly had improved remarkably, and insisted that it was due to her diligent efforts combined with consistent supports.
The court came to the conclusion that both parents loved Belly, and that there was no way in the time provided to decide who was right. The judge decided that custody should be changed to 50/50, with the parties alternating weeks of access with Belly. The judge said that the purpose of the order was to see who was right. If mom was right, Belly would display traits of autism regardless of whose week it was. If dad was right, Belly would only show such traits on mom’s week. The court decided to wait on any decision as to child support, or attorney fees (the court can make an order that the party with more money subsidize the fees of the party with less). That last decision was a disaster for Regina. She did not have funds for continued litigation. She had to stop fighting.
For the next year, the parties had alternate weeks of custody. Silas never allowed ABA or OT in his home, and he did what he could to undermine Belly’s services. If Regina made a doctor’s appointment, he canceled it. The same was true with any dental appointments. Silas repeatedly visited Belly’s talk therapy counselor, demanding that she justify her continued services, as Belly was always “fine” on his time. The counselor ultimately withdrew from the case. Two successive ABA providers also withdrew from the case, citing Silas’ resistance and uncooperativeness as the reason. The OT stayed on, but could only provide services on alternate weeks. Belly began to backslide, becoming more and more violent in his fits and tantrums. Not surprisingly, those fits and tantrums happened more often on Regina’s time, when he felt more comfortable and relaxed.
Belisario’s behaviors and social awkwardness made him a perfect target for a particular bully. Regina complained to Belly’s teacher, and accused the teacher of not protecting Belly. Years of struggling to help Belly had taken their toll on Regina, and her patience had been exhausted. Her demeanor with the teacher was confrontational, and the teacher did not like it. Furthermore, the discussion occurred in front of other parents, which the teacher found embarrassing. The teacher complained to the principal, who issued a letter restraining Regina from coming onto school grounds for ten days. The basis of the letter was that Regina had allegedly threatened the teacher and had put her in reasonable fear for her safety.
Regina was able to get letters from other parents who had been present at the altercation, and to present those letters to the appropriate department of the school district. The letters described the conversation between Regina and the teacher, and conceded that the conversation had not been friendly; however, all agreed that no threats had been made, and the teacher had displayed no fear (reasonable or otherwise). When the district interviewed the teacher, it was confirmed that the teacher had felt disrespected, but not threatened. Furthermore, additional investigation revealed that the bullying, which the teacher had initially denied, actually had occurred. The end result was Belly being transferred to another class, and the principal issuing a letter of apology as well as a declaration of school policy against bullying.
At the next IEP meeting, Regina felt like she was in another world. Silas was there for the first time. In fact, it was clear that he had been there with the IEP team for some time before Regina had been allowed into the room. Regina knew this wasn’t right, but she didn’t know what to do. During the next hour and forty-five minutes, Belly’s new teacher presented a revised progress report showing elevated performance in all categories as well as remarkable social behavior and citizenship. Similar information came from the principal and school psychologist. Silas chimed in that this all jibed with what he observed at home. Some observations of “defiant” and “tantrum” behavior were admitted, but all occurred on days that Belly was with Regina. Regina could see where this was going. The school, with Silas’ support, was building a case for reduced services.
In the next installment of this story, the scenario unfolds further, with Regina addressing the hostile school situation, and with further court proceedings. Hopefully, this fictionalized scenario will be helpful in illustrating common situations and how best to address them.