Daycare: A lot more than a “perk”
July 5, 2008 by Kristina Chew, PhD
Filed under Health
Daycare. And, afterschool care.
The very idea of these have long seemed a luxury to me. There’s basically five people on this planet who’ve provided these for Charlie: My parents, our speech therapist who we’ve known since she was in college, Jim, and me. As my parents live in California (they’re retired and can visit a couple of times a year, for extended periods), and the speech therapist has a full-time job, does Early Intervention, and much else, basically our daycare/afterschool care team has consisted of a total of two people: Jim and me.
This is not for lack of trying to have Charlie in such programs. In fact, it was because Charlie was in daycare (an on-site facility at the St. Paul university I was then teaching at) that his developmental delays were noted when he was a year and a couple months old, and that he was diagnosed with autism just as he was turning 2 years old. Seeing Charlie all day long among other children his age made it very clear: He’s different.
Jim had a sabbatical when Charlie was 2-3 years old and was the parent who was home for the much of the time that Charlie did his first year of intensive ABA. I took a leave from my job the next year (and ended up eventually resigning from the job). After we moved back to New Jersey, we tried Charlie attending a daycare center for a few months; it was a friendly, very lowkey kind of place, everything worn and a bit sticky. Charlie did ok for a few weeks but mostly ended up walking back and forth in a corner of the playground kicking at the dirt and we took him out, rearranged our schedules, got used to rushing home. A few years later, a neighbor met Charlie twice a week at the bus; this again went sort of well amid some really harried moments, one involving the hard surface of our porch.
The one local after-school program for special needs kids that I could find was in a sort of warehouse space, with a bare concrete floor, an aging tv set, and some tables and old couches. The staff were pleasant, but were usually talking to each other when I picked up Charlie, running back and forth in the huge space; all the other kids were sitting quietly at the tables. After a hair-raising phone call from the bus driver when Charlie refused to get off the bus to go into the center (two staff members were unable to get him off; our speech therapist friend was able to get to the center before me and took him home in her own car), we knew that was the end of Charlie at that center.
At this point, for Charlie to be in an after-school program with kids his age, we’d have to find a center that would take a child who needs (at the age of 11) constant 1:1 care, find and hire our own aide. Working out schedules (and driving home really fast) seems to be the better, or the pretty much workable, option. I know we’re hardly alone among parents in struggling to find decent, affordable daycare. Unlike other children, Charlie will always need someone to meet his bus and supervise him—this is one area that he can only so independent in.
An article in the July 5th New York Times about Google’s “fumble” in providing daycare to its employees—-for one thing, a plan to raise the price from around $33,000 to $57,000—reiterated how important, and emotional, an issue care for one’s children can be. Much of the concerns of the Google parents concerning daycare are far from anything I’ve had to worry about for Charlie (such as making sure the “hot kiddie philosophy of the moment,” Reggio Emilia, is used) but talk about waiting lists with hundreds of names in front of your child’s rings a too familiar bell. And the stress and strain of parents wanting to give their kids that good foundation is more than familiar to me, a long-time veteran of Early Intervention in manifold shapes and therapies.
I’m more than glad I’ve been able to spend so much time with Charlie day in and day out; I’ve been able to teach him lots of things and I’ve learned a lot in the effort. He’s my trusty compantion, my good friend. But it seems something more than funny that something so essential (at least to this working mother)—-a safe and friendly place to leave a child so you can work (to pay for the daycare, for one thing)—is talked about as a “perk” and even a “luxury.”
This article hit home for me. I have never been able to work full time because good afterschool care was not available. Like yours, my day care choices were all poor, so I have only worked part time, and taken care of my daughter anytime she wasn’t in school. Now it may be too late for me to obtain a full time job, which has always been my ambition. It is very discouraging, but I could not condemn my daughter to the sort of atmosphere you describe, or worse, just so I could work more. She deserves better than that… but it seems to me I deserve the right to work at my chosen profession (I have a master’s degree) also.
When older girl was little, the hot button topic at the university here was child and afterschool care for faculty and staff, because the local facilities were inadequate to meet the need. I helped organize a series of meetings on the question that brought the parties together to highlight the issue and literally hundreds of people showed up. Cost was always the issue, although no where near the range of $57,000/annum. I admit that at that time special needs was not at the top of the discussion, except in re: ADA requirements. I don’t know how absolutely useful that was, but it was part of a period that got things rolling in prioritizing centers and programs, and things improved.
Fast forward some years. Our community does not have a special needs childcare except for children under 5, and enrollment in those is dependent on EI/ECSE, so it is not as flexible as a typical childcare situation.
I wanted and needed Eleanor to be in a typical peer program. By serendipity and a lot of discussions and interviews, we negotiated for Eleanor to be in the same program our older daughter had been in because it has an excellent reputation and we had had good experiences there. They also had space and were open to discussing this with us, although I am pretty sure that they were initially concerned that this was going to be something that would be in all parties’ best interest, and it did necessitate hiring and training shadows beyond the cost of the program itself. She has now been going there for varying hours for 3 years with the same teacher and pretty much the same peer group and will be for one more. On the whole it has been positive–Eleanor has gotten used to being with the other kids and working among and with the group, they are used to her and we have not had problems with bullying or concerted exclusion. The teacher has always met us more than halfway, staff has learned to more effectively integrate her, and she has a “high status” job that she greatly enjoys and is very good at. The first 6 months were the toughest.
A collateral is that Eleanor and our family was kind of the test case. Since we have been there, they have been more actively enrolling other children with autism and special needs, and sent one of the senior staff to get specialized training and act as liason.
The issue that we are now considering is that there are no organized afterschool programs like this, apart from sports teams or specific skill classes for anyone Junior High or above, special needs or typical.
There’s no way we could put L and/or K into regular daycare. For one, here in WI it is incredibly expensive and we would have 2 kids going, my working full time wouldn’t even cover the cost of care. Assuming they go to a traditional care center. But like Charlie and others, they need more structured care from teachers trained in autism and autistic behaviors. That isn’t available here. So I stay home while dad works a FT and PT job, then I do my PT job at night. It’s hard on my husb and me, but best for L and K. My mom and mom in law do any babysitting for us. Its not great but at least I can get to my OB appts with out bringing both boys along, b/c right now I can’t even pick them up!! Thankfully they are willing to drive the hour plus once and a while to watch L and K for us.
There are times when we really need to have a regular babysitter that lives near us and can let us get out of the house for dinner or a movie. I am hoping to talk to the High schools in the area to see if there is anyone interested in Education or Spec Ed for college and would like some experience with special needs kids. But it would still take a long time before my guys would be comfortable with some one new and I would be ok leaving them.
Our early intervention centre twice a month runs a mums afternoon off. They watch your children – both the special needs and NT, while the mums go to do tai chi or scrapbooking.
Fantastic stuff to have a break from the children but some problems are raised:
1. Dads can not participate
2. Mums have to do the activity organised for them.
Still something is better than nothing and lucky for us we are a typical nuclear family with stay at home mum.
I had an excellent child care center… until they raised the min. wage and the center decided they had to charge me the amt they paid the 1 on 1 caretaker they hired. I went ahead and paid the difference. Since he has a full day of school, and his new district wouldn’t bus him over there, I just had him go home over the school year (dad is a sahd – not as nice as one would like though, considering dad isn’t exactly neurotypical himself)
As dad is already handling all three kids single handedly for 3 days in a row, for about 8 hrs each day (normally it’s just weekends, but trister doesn’t have school on Friday), I re-enrolled my son this summer, for 2 half days a week, Monday and Tuesday.
now I’m getting charged min. wage + taxes the center pays for that person, as before, but on top of it they’re also charging the typical half day rate, something they didn’t do last year.
It’s singing to a tune of $645 for the month of July. for 2 half days a week. I only make $14/ hr, though I work full time. Luckily we’ve just been approved for a support subsidy and respite care… However, I’m seriously considering not having him go in August, and hiring someone to come over and help dad out, since that would be less expensive, if I got a college student, even though the typical setting is good and will probably prepare him for the times they take him into a typical classroom starting next school year, in kindergarden, and he does seem to love being there (while normally he jumps into my arms when I pick him up, he had no interest in getting off the teacher’s back – his 1 on 1 aide left before I got him, but since closer to closing it’s less busy, the teacher just carried him around on his back – this teacher had been his first one on one aide, he was soo happy when I picked him up)
I realized this year that we could no longer really hire a high school student for Charlie—-there’s always the possibilities of behaviors and of the sort that would be difficult for someone to handle, if they had not had Crisis Management Training. And then the puberty issues — they have to be handled really carefully.
We have gotten some support for respite from the NJ Dept of Developmental Disabilities; they do offer respite in the form of a weekend in which one’s child is put up in a hotel with a caregiver. — I don’t think Charlie would go for that!
I’ve found the whole afterschool problem harder now that Charlie is older and his same-aged peers don’t need daycare type programs, but sports and extracurriculars as Regan mentions.
Daycare for special needs kids remains a topic high on my list of long-term interests.
I once had an issue where I could not find care for my kids due to my having to serve jury duty. Luckily you can postpone it for three months and I did that so it would be summer and then still no respite agency (tried 3) and just used before and after summer camp and got regional center to fund it after the fact. This was the best outcome since they just went to camp early and stayed after the other kids left and watched tv with two workers watching them. Luckily it was only for about 8 days while I was on a case.
We had a few, blissful years where autistic youngest attended a daycare that got support from an agency to provide training and monitoring for her care. (Although the agency was very unhelpful at first — wanting us to pull her from that daycare and go back on the interminable waiting list for the university centre that wouldn’t give us the time of day, simply because they’d worked with the university centre before.)
That ended when she started into school and we haven’t been able to get after-school care or more than a week or two of appropriate summer camps since. It’s all on us which is why I become such a nag with my department as to my teaching schedule: nothing after three unless Mike’s got the evening off from the library so I can teach night classes.
Her older sister can now watch her for short spurts of time but we’ve never gone out for more than a walk around the neighbourhood on those terms. And we’ve been granted, but unable to spend, thousands of dollars in respite care subsidies because we’re supposed to find someone ourselves. That’s kind of hard when your life pretty much revolves around supporting your autistic child and you live somewhere far away from family networks. *sigh*
@Janice, you wrote—
“That’s kind of hard when your life pretty much revolves around supporting your autistic child and you live somewhere far away from family networks. *sigh*”
that’s exactly us.
I’m feeling lucky that Charlie will be starting school earlier (7.45am) so I can start teaching at 9 am—have to leave by 1.15pm; Jim and I have been working on making sure that we teach (mostly) on different days, so if Charlie is sick someone can be home. And he can do evening courses. I’m acting chair of my department in the spring so I guess I can have a bit of a choice about my schedule…….
juggle, juggle.
Eek. Childcare. With all the running to therapies we do, I’m not expecting to get a regular job anytime soon. We have neighbors with an ASD child and they are both full-time profs at the college- no idea how they manage, especially since there’s no childcare place here who will take a special needs child and provide appropriate care.
I have been reading your blog for months but never had anything to post until now. I work at a summer program for autistic children called ACAP in Portland, Oregon. There are two sites each with four classrooms: Older, Younger, Older High-Functioning and Younger High-Functioning. Our staff to student ratio is always 1:1, or on a crowded day, 1:2 with the more mellow kids. This is a non-profit organization and only runs two months a year, but we provide a great deal of relief to parents who work year-round.
The way the classrooms work is by including several teaching assistants and one main teacher per room. Every day we go on field trips in the community (swimming, Children’s Museum, the zoo) and have classroom time with both play and learning activities. I also work with neurotypical children outside of this program, and I find it hard enough to be outnumbered by children, and so the key part of ACAP is that the kids do get the complete attention of an adult and are encouraged to socialize with other children (both autistic children within the program and neurotypical ones in the community).
The point of my grievously long comment is to let people know that such programs exist, especially any parents living in the Portland area.
For anyone curious, the website is:
http://www.autismwebsite.com/acap/summer.htm
I’ve never been in daycare before. My older sister used to have some babysitters, but a number of them were abusive and after that my parents only got a couple nights out in 20 years.
Due to the funding mechanisms in this province I am able to stay home.
The boys have been to sitters/daycares/programs and will continue to do so.
I did jury duty for a week 6mths ago. The Mom had a harder time being away from home than the boys in this house (incl. dh)… I’m not ready to go back to work, and thankful, I don’t have to.
S
Quick note on the economics: the $33K (to $57K) price is the cost for two children. Still outrageous, but comprehendable. My daycare in Boston was $24K/year for infant care. Which is precisely why we hired a nanny when my second son was born. I think that’s Google’s idea as well – it’s affordable for one (RELATIVELY speaking, this is San Fran where the salaries are higher), but prohibitively expensive for two or more.
@Sarah, thanks so much for writing about the program—-it sounds really good. Charlie goes on one field trip a week in the summer. I know there’s an after-school program for older kids with autism and other developmental delays that has them go places (bowling etc.). It’s in the NJ county that we used to live in (as I recall there was a waiting list…unerstandably). Thank you…….
@Melody, Was your sister able to tell your parents about the babysitters who were abusive? Not good, to say the least…
@farmwifetwo, jury duty! am not ready for that (is one ever)…..
@Laura, was talking to a friend who has a young child and had the message reiterated, daycare is expensive for any child! she noted that she knew of families who had left where she lives (midwest) for the west coast and come back for the daycare.