Special Needs In Our Homes: A National Discussion That Must Continue

Special Needs In Our Homes: A National Discussion That Must Continue

Our family’s story became a national discussion when, after years of unsuccessful advocating for support for our mentally and organically disabled daughter, we made a decision to send her to live with another family in another state where she would be able to get the support that eluded us.

Many people assume that our story is just another adoption story and though I came to live it because we adopted, that is not at all what it is about. I am a huge proponent of adoption and I place blame on no one. Our story is our story. Our adoption, and only our adoption, was sadly built on a foundation of deceit.

Perhaps for all the right reasons, our daughter’s birthmother chose to hide her prenatal abuse to find the best family for her baby. Her mindset was, no doubt, that the right family could undo any of the harm she caused to the baby by her drug and alcohol abuse, no less her own psychological problems. The trouble started when she didn’t tell us about that abuse. We never knew what we didn’t know to know. The moral of our story is that unconditional love is just that. You do what is best for your children because you love them unconditionally. That includes letting them go, whether or not they have reached the prime age of 18.

After a series of events that left the integrity of our entire family in the balance, we were forced into creating a band-aid solution. The failings of the mental health system meant for us no village, no hammock. No respite. Just a 12 inch pile of lost therapeutic hope, doctors without suggestions, schools without safety, insurance that wouldn’t cover long-term care, and danger in every corner of our home.

This was our life. At points I didn’t know what needed more attention, her reactive attachment disorder from the adoption trauma, the increasing mania from her bipolar disorder or her organic brain damage from alcohol exposure. All were huge topics of controversy everywhere I looked to educate myself.

Custody Relinquishment (CR) has been the dirty secret for families facing unmanageable special needs, behavioral difficulties, and mental illness in their homes and not in isolated cases. By 2009[1], there were custody relinquishment cases numbering in the tens of thousands. (See GAO 2003 Report[2])

Ours wasn’t a story of CR, though many of those stories are never acknowledged publicly. Sadly, parents are left feeling so much shame and guilt for being unable to find solutions for kids (adopted or biological) they love unconditionally but can’t care for anymore, they move and change their names to avoid the judgment of others.

I had worked tirelessly and very publicly looking for support and resources for my daughter. We took a second mortgage and eventually lost our home as I spent money I didn’t have looking for any therapy that might help her.

She had no learned behavior, no understanding of cause and effect and no boundaries. Her rage was unparalleled and her self destructive tendencies gained strength as did her intention to commit suicide just after she celebrated her 6th birthday. She ran into traffic and chaotic parking lots along with jumping out of moving vehicles. I couldn’t keep her or anyone in our family safe anymore and no one could help me.

How did our news attract attention?

A solution born of years of research, we carefully arranged to enroll her in a small private school and a stipend-for-board housing situation with a family experienced in FASD and fostercare. Three days after she left she was calling them mommy and daddy; a slap to the face of any parent, no less one that had devoted every day of 7 years to parenting her.

A week after she left our home, I contacted a reporter and detailed the tragedy identifying some salient and topical newsworthy points.

Just 4 months before, a Tennessee-based adoptive mother of a child from Russia stuck a “return to sender” note in his pocket and put him on a flight to Russia alone when she found his continued oppositional behavior unmanageable and was denied public assistance with him.

Her story was masked in gray where ours was not. Despite the differences in our stories the common threads made it suddenly much more attractive to the media. Our story was further proof that the system wasn’t equipped to handle children with these special needs. And maybe, just maybe, these situations weren’t as isolated as one would initially assume.

The media megaphone

The writer made a full commitment to tell the entire story, highlighting significant points about FASD, the lack of recognition in the medical field, and the black hole of support and funding to help those raising kids born with it.

She spoke to organizations, doctors and state agencies who had failed to provide us with support that would have eliminated the need for us to move her from our home.

The story she wrote had feeling. It had a beginning, middle and end and throughout it she wove facts supporting my sound bites. Although I got to read the finished piece, I had no control over the article. Nor did she. Once it was on her editor’s desk, it was out of both of our hands, and what came of our deeply edited story punctuated by a tabloidesque title started a media frenzy.

I have learned much from this experience of moving from a private citizen to a national advocate for the awareness of a disability that stems from a controversial act of a mother-to-be. Viral efforts by others like Liza Long (I am Adam Lanza’s Mother) have continued to prove the depth of emotion the issue of help for our children with mental illness stirs in our nation.

Appearing on Good Morning America allowed us to speak to six million viewers, and untold more millions since it sits on GMA’s website. Those broadcast viewers were in addition to those that have read or commented on our story in any of the 153,000 internet pickups that still sit in perpetuity on the web.

Education is the only way to FASD prevention. The choice must be the mother’s. Speaking out is also a way to call attention to the fact that situations like ours are not just isolated incidents. The more stories like ours, like Liza Long’s, that are told, the more likely the controversy will lead to funding, programming and change!

Continuing an open dialogue with the nation’s media is imperative for those of us raising special needs children in our homes. We need support and to effect change on the way we get that support for our loved ones. Creating a national discussion is the best way to effect change. Being at the center of that discussion is not an easy place to sit, but well worth the outcome if it means our children get what they need and our families stay together.

[1] Relinquishing Custody-The tragic result of the failure to meet children’s mental health Needs– Source: Bazelon Center for mental Health Law

[2] “Some officials estimate that parents relinquished over 12,700 children to state or federal custody to access mental health services” Source GAO Report 2003


About Author