This weekend, I went to a retreat sponsored by Care.com, a site that connects people seeking help for their kids, parents and pets with caregivers. I just signed on to be a paid ambassador, and a group of us met up to discuss the company. At a hotel/spa, no less! I met some absolutely amazing women, including Sheila Marcelo, founder and CEO of Care.com, Cooper from The Motherhood, Amy from Mommy Tracked, Christine from Boston Mamas, Lindsay from Rock And Roll Mama, and Morra from Women Online. I'd already met Jennifer James, of Mom Bloggers Club fame, at Blissdom and adored her. Please take a sec to register your blog at her site if you haven't yet, it's a great community and she'd love to keep it growing.
The retreat was filled with good conversation and information, good food, good wine, good naps (two!!!), even a very good facial. My pores are extremely happy right now.
We even did this cool activity where we all sat in a circle and played drums with a cute guy someone called a "nugget." (No worries, honey, you are my one and only nugget, though it would be ever so nice if you could cut your toenails.)
We talked a lot about moms and their needs, though we didn't delve into kids with special needs because there was so much to discuss. But clearly, when you have a kid with disabilities, finding care presents some unique challenges.
We are beyond fortunate that Linnette, the nanny we hired before Max was born, is still with us. Last year she won the Care Hero contest I entered her in, and that's how Care.com knows me. Other than lucking out with Linnette, finding babysitters hasn't been so easy. I miss having my mom and my sister, my best sitters. When Max was a baby, they helped me stay sane. But my sister had to go off and have a baby (so thoughtless of her) and my mom's getting on in years (similarly thoughtless behavior). When Max was little, we also got respite care through a program with The Arc.
I'd never feel comfortable leaving Max in the hands of one of the neighborhood teens. We need someone really experienced. This person has to be comfortable feeding Max and making sure he doesn't choke on anything. She also needs to give Max seizure medication. Most important, I need to feel confident that if the worst happened—Max had a seizure—she'd know what to do.
Common sense is key, too. The other day, I walked in and found Max roaming around by himself; the babysitter had gone down to the basement to get something. She'd left that door open, which is dangerous because Max is in this Superman stage where he thinks he is capable of doing anything. That's awesome, yes, but he hasn't got the going downstairs thing down pat.
I know that some of your situations are even more complicated. What concerns and challenges do you have about finding help for your child? Who do you trust with him or her?
Photo/Just My Perspective
We have a wonderful nanny who started with us when I did some part-time consulting when my daughter was 2. She then became our date night sitter when I stopped working again, then we left the country for 2 years - but after Jack was born and we realized how intense his care was, we brought her back in to give me a bit of a break. She's been awesome, but is now leaving to go to grad school back east - so I registered on care.com a couple weeks ago and have been interviewing people from there. I was so very happy to find that site, and would highly recommend them to anyone looking for a caretaker, but especially someone who needs a caretaker with special needs experience!!
ReplyDeleteParents. Thank heaven for Mom and Dad. They are getting on in years, too. Still healthy though, and if they're like the rest of the family, they'll stay active until very late in life.
ReplyDeleteI'd be totally screwed without them.
Oh, Lord. This comment box could never do justice to this topic! I think it's good you've brought it up, though, and am intrigued by your association with Care.com. I think I signed up with them at some point and certainly see their constant posts of FB, but I haven't the energy to really look into it all. I've been lucky enough to have the same caregivers for many years, although I do yearn for someone young and new, someone with a fresh face and heart for my daughter. It's so difficult to find someone who is both capable of stimulating her and doing basic life tasks (diapering a fifteen year old is not for the faint of heart!). Anyway, thanks for opening the discussion, Ellen.
ReplyDeleteI completely agree with Felicia - I don't know what we'd do without my parents. Still both healthy and relatively young, although our T-man is over 4 feet tall and strong, and my parents are not big people, so it may pose a challenge in the future with changing diapers (oh please let that not be a problem because T-man will be potty-trained, oh please!!). We also have my sister-in-law who happens to be a special education teacher, she is a GEM! We have well-intentioned others, but I wouldn't leave T-man with them yet, basically because they are all talk and no action in the helping department. My husband and I always talk about how we don't go out very much just because we don't trust very many people. Our younger son is very independent and could probably help out a bit, but the kid only did just turn 3. So we rely on the ones that we can and treasure the alone time when we can get it. And are grateful for the all the help that we do get.
ReplyDeleteKristen
Being military, we move a lot. So once we find someone we trust with Isaiah, it's time to go. Then we have to start the process all over again.
ReplyDeleteThe biggest challenge has been living overseas, away from our families. We are closer now, but my husband's parents are both deceased, as is my father.
My mother is wonderful with Isaiah, but she is getting older which makes it more physically challenging. My sister is amazing with my kids, but she lives out in Arizona---we're in the D.C. area. My brother and his wife are about an hour away.
My oldest daughter is a good care-giver for short amounts of time. Isaiah also qualifies for respite care, but we haven't had an opportunity to look into providers yet. We're still unpacking boxes!
Ditto to those who have said that they don't know what they would do without their parents. My mother is my son's primary babysitter..whether I'm heading to work or to a rare night out with my hubby. Thankfully, she is retired & more than willing to make herself available to us whenever we need her. If she's unavailable, then my backup sitter is my sis, who happens to be a nurse as well. That is it for my son's babysitting options. My son has a heart condition & takes multiple meds, several times a day. There is no way that I would trust some teenager to administer those medications. In addition, my mom & sis take the time to practice all of my son's therapy exercises with him while they are here. They love him dearly & only want the best for him. I am so blessed to have to have such a supportive family. I would truly be lost without them!
ReplyDeleteThe only person I trust to leave Jailen with for any length of time is my Mom & we live with her so she usually doesn't feel like babysitting when I'm ready for a break. She's in her mid-50's & says there's a reason we have kids when we're younger. Her patience just isn't there. She doesn't usually let me go off for leisure. I haven't had a "girl's night out" in I couldn't tell you how long...Jailen's 5. I don't trust even my own sister to watch him, as my parents are raising 1 of her 3 because she's always been so irresponsible even where her own kids are concerned. I was approved for respite care but had to release the funds because my Mom doesn't want anyone coming into her home. So, I'm pretty much the only one & there's no Dad involved. He's been gone since Jailen was 8 months old. It's very stressful at times, but we're making it. I look to be moving out soon then we'll see how difficult it'll be to get the respite care back. Other family doesn't babysit either. I used to ask from time to time but then I gave up. They love him to pieces but they don't want to be responsible for anything that might go wrong. That's understandable I guess. Oh well, life goes on.
ReplyDeleteIt isnt really understandable. It only shows they are afraid of making mistakes. Tell your mama, she has got to give in somewhere as you need a break.
DeleteWe have nursing care - enough hours to cover overnights and working hours, but not much beyond that.
ReplyDeleteWe have exactly one friend and zero family members who were willing to learn Alex's care.
We've talked about looking for someone else - we can't go away for the weekend, for example, and getting even a night out for our anniversary was a challenge...any travel for work has been put on hold, but I don't know how much longer I can hold it off.
We need someone who is capable of managing a trach - we're well beyond the point of anything scarier than snot, but still, airway concerns freak people out.
Shame on them. Why arent your family members keen to learn challenging things? Airway troubles dont scare me, very little does actually.
DeleteWe are blessed that my Mom lives in town and helps out a ton. I quit my job b/c of this very reason and now work from home---I couldn't find anyone for all day care. We hardly ever use a teen sitter...usually only after Olivia's in bed and they are instructed to watch her like a hawk. If we didn't have family in town, we'd be screwed.
ReplyDeleteI've no family in Ireland, so my eldest daughter and a friend babysit together some of the time. And then I advertised on a parenting website for an adult babysitter with experience of special needs - I got 17 replies and am currently employing a lovely girl from Brazil :)
ReplyDeleteFor a very few brief months, Mango and I qualified for respite care thru Medicaid. I used those few hours a week to aide my parents who are both in poor health.
ReplyDeleteThey made changes to Medicaid at the start of this year, and we lost our respite. Basically I was told that since he was not on oxygen and did not have a feeding button, I could leave him with the teenage babysitter from down the street (doesn't matter that he's legally blind, can't speak, roll over, sit up, crawl, has feeding issues, cerebral palsy, etc...).
So I don't have challenges any more I guess - but it's because I know better than to look. There's no way I could afford it.
It's hard, but it's not all bad. We get to spend a lot of quality time together, I know when he does his first 'whatever' - I don't have to hope someone catches it on video for me. I have a local supermarket that 'loans out' clerks to help you shop, so that's a huge help.
I love him dearly, but a morning here or there, I admit it - I have woken up and wished I wasn't a mother - just for a couple of quiet hours - but after I get him out of his crib, that thought always goes away, and I feel guilty for having had it at all.
Thats awful. I think if the child should still qualify if he/she is legally blind, cant speak or roll over, crawl, sit up, has feeding problems and CP. The fact he does not, just shows America is not doing it right for the children who need help.
DeleteGlad to see this discussion. I saw that someone else had to quit work because of child care issues. That was basically me...that and the fact that Emma needed intense opportunities for stimulation, etc. I knew I was the only one committed to getting it done, and I am still here. My parents help, but I know that they won't always be able. I haven't found anyone comfortable with the lifting, feeding, lack of language, etc. yet. I keep on looking though.
ReplyDeleteMy parents live three hours away, so no dice.
ReplyDeleteFor years, my salvation has come through the high school girls in my community. They have a community service requirement that many of them happily exceed, and we've often had up to six or seven a week coming to help with E. They come in pairs at the beginning as they learn, and while I'm home. So I slowly train them. And eventually, they can come babaysit for him because they know him and he knows them.
Now, of course, I grow my own talent. My eldest child has modeled herself after those high school girls, and she can do the job just fine.
Of course, for longer term, we're up a creek.
No one...yeah I know..My son is 3 and I've been away from him less than 5 times, the only exception is when he's at OT therapy, there, I can leave him for an hour and a half while they work with him, it's in the hospital and very safe. But other than that he was over 2 years old before I ever was able to leave, since I had him. My mom isn't close by or comfortable and my ex is not all that involved in his life. When he is around, I do trust him to watch him, but that's very few and far between, and now that he's older it's getting fewer, because my son doesn't see him enough for him to be comfortable with his own father, not good, but not in my control. Day care isn't realistic, I am self employed and he can go with me, so financially I can't justify sending him, just because. And the few local drop in type day cares I have found, won't take a special needs kid. We do go to a play group, with other moms of SN kids, but it's not a close knit group. So for now, I enjoy every moment along in the shower I can find :)
ReplyDeleteJen
tesnjen at aol dot com
This is a challenge! We live 1000 miles from family so they are not an option. If we were close, I would trust my sister and my in-laws. The only issue with my in-laws is that they are getting up in years and my daughter isn't getting any lighter! When we do seem them a couple of times a year they are always happy to babysit and get her all to themselves and we are happy to have some free time.
ReplyDeleteWe have a church family that is wonderful. They arranged date nights for us once a month for a while there. That has stopped now though. *sigh*
We do have a college girl that watches Emily every Friday morning and she is wonderful.
We are entitled to respite care, but have had trouble finding a nurse that we like and trust. We just recently found one and hope she doesn't quit(that has happened one too many times).
It can be tricky!
Ellen!!!
ReplyDeleteIt was so amazing to meet you and to hear some of your story. I can relate to some of what you've been through, and love how you tell the real deal, not any party line of martyrdom or sainthood.
My special needs kid is older now (13!!! Yikes!) and now I worry more about setting him free in the world- someone who routinely steps into the street without looking, who bumps into strangers because of his spacial perceptions (we were a sight at Disney.:) and I hope I'm doing all I can to help him find his way. SO happy to meet you, you rock.
This is a wonderful topic.
ReplyDeleteIt's been years since we have gone away for an extended time.
With asthma, food alleries, adn no tolerance for change in routine: we stay home.
Others have vacations, but we stay.
That's the biggie. Wonderful topic. Thank you!
Honestly? I didnt have any trouble finding childcare for Amelia. I love that I can leave her with a untrained although not unexperienced babysitter and she's safe while I take a needed break. I do have one requirement- the person must be willing to learn.
ReplyDeleteI dont think we qualify for respite care because Amelia doesnt have feeding issues, seizures, speaking delays or a severe mobility impairment.