Our newborn son Zak was home for just four days when we realized we needed help.
We didn’t know it at the time, but he was suffering from three major issues that afflict babies with Fetal Alcohol Spectrum Disorder (FASD): 1. feeding issues, 2. sleeping issues and 3. near-constant irritability.
It took at least forty-five minutes to feed him at night, during which he’d squeak, scream and fuss. Ninety minutes later he’d be awake again, screaming for more food. And during the day, he cried 80% of his waking hours. Even if we didn’t have a six month old baby to take care of in addition to Zak, we’d have been thoroughly exhausted. Combine the two and exhaustion is no longer an adequate word. What we were doing was unsustainable.
So we hired a night nanny, at roughly $1100/month.
Four days a week, from 9pm-6am, Connie would sleep over, feeding, cuddling and changing Zak. For the next few months, we got some much needed sleep. (Mind you, we were still getting up with Wheezie. Thankfully, she only woke up twice and it was a quick bottle before we were back in bed, and since we alternated feeding her on the Connie nights, it meant we each got two full nights of sleep each week, which felt like heaven.)
By the time Zak was three months old its was clear something was not right with him, and we knew we couldn’t expect a babysitter to manage both Zak and Wheezie, so I took an unpaid year off from my part-time work. That cost us about $40,000 in lost income. And because he was so demanding, we still had to pay for an occasional babysitter so that I could take a nap when Wheezie napped but Zak stayed awake, screaming. Sometimes I would take a shower, (or go to the beach with Wheezie, who was getting seriously shortchanged by the way her brother’s needs reoriented the family’s equilibrium).
By the time Zak was nine months old, we knew that cobbling together the occasional baby-sitter was no longer sustainable.
Then we hired a live-in nanny, at roughly $1600/month.
To manage Zak’s care, we had to forego a salary AND hire help. Usually it is one or the other. But he was simply too much work for one person.
Sure, having two babies just a few months apart was no small factor, and it is likely we would have to pay more than we expected for help.
But Zak’s FASD made him off -the-charts difficult. He was unlike any baby I had ever known. He was demanding and inconsolable. And he was expensive.
A recent study examined the cost of FASD and estimated that the annual cost for an FASD child is around $23,000. The authors tell us that the “per-person costs of FASD are substantially higher than costs for other common conditions [such as autism or diabetes].” Zak is not quite three years old, and by my estimates, his care has cost us about $27,000 per year. And I am not even counting pre-school, food or clothing and diapers! (I figure it is likely we would have sent them to preschool anyway, though likely for fewer days per week than we do.) And I’m not counting the therapy sessions we’ve needed either…
We are older parents so we had savings. We are very lucky in this regard. But we squirreled it away carefully and deliberately, and thought that the most expensive thing about the kids would be their adoption costs. We were not prepared to spend down our savings so much simply to raise a child who was exposed to alcohol in utero. Money, which had not been a significant stressor for us, is now a real concern. Our math has changed, and it’s uncomfortable. If we didn’t have this savings, I don’t think we would have made it. I don’t know how other have made it work.
Honestly, the thought that he will continue to cost us so much each year is depressing. The daily struggle of simply trying to raise such a behaviorally unusual child is difficult enough.
But add the financial cost and it feels like an injustice of some kind, like this is the sort of thing that simply shouldn’t happen.
But it does.
And until sexually active women take regular pregnancy tests and pregnant women lay off the alcohol, and until adoption professionals actually prepare adoptive parents for the possibility of FASD, families are going to be caught off guard by how much they may suffer emotionally and financially.
Is there a solution? Email me some ideas at firstname.lastname@example.org or comment below!