In all of my years of parenting I’ve never really many babysitters.
When my oldest were little we were to poor to be able to afford to go out AND pay for a sitter, so we’d put the kids to bed and have date night at home.
When my younger kids were little my bigger kids were old enough to be able to be on younger sibling patrol for short amounts of time, like when I went walking.
I’ll never forget the time a friend and I were out walking and as we passed my house saw my now 15 year old standing in his window screaming, “HELP!” “They’re killing me!”
I pretended I had never seen that kid before in my life and hurried on.
Parker’s been a totally different story. My Mom, who has been through the same trach training I have, is too nervous to be with him by herself. She’s worried she’ll hurt him, and I understand that.
I can leave him with Reed of course. Reed’s big on treating Parker just like all the rest of the kids. Which may explain why Parker discovered sitting in the kitchen sink yesterday while I showered.
ahem.
(Actually, Reed is beyond amazing with Parker. And I trust him completely. As long as there isn’t a football game on. heh.)
Other than that, for me to be able to leave the house, Parker needs to have a nurse here.
I’ve had a couple of neighbors wonder why I just couldn’t set up some kind of list of sitters for Parker.
I could.
As long as they were trained in trach care, trach cpr, knew how to change out a trach, understood the basics of g-tube usage, how to use a sat monitor, and was well versed in how to switch Parker from his trach nose to his trach mask to a vent. Oh. And the shaker vest. Can’t forget the shaker vest treatments and the nebs.
It’s about at this point that my inquirer gets that deer in the headlight look that I sported the first few years of Parker’s life.
Recently I was talking to a few Mom’s of kids with Down syndrome. The subject turned to finding a good sitter to watch their child so they and their husbands could go out once in a while. Together.
Seems as though scoring a sitter for even a healthy kid with special needs can be kinda like finding hens teeth.
There aren’t any.
Which can make life really hard. Especially if Mom needs to work.
So, I decided to come to the experts.
You guys.
And ask you about your experiences finding someone to tend your child with special needs.
Have you been successful in finding a good sitter?
Finding someone to watch my daughter has been very hard. I have my mom and sometimes my mother in law. Gracie is pretty healthy, but she doesn’t have any safety awareness so she needs constant supervision. She also doesn’t play with toys so she is always into things that she shouldn’t be.
I did hire our classroom high school student helper but after one time she would never come back.
Finding someone to watch Gracie has been an impossible task. No one can understand just how complex she is and just how much care she needs.
I look forward to hear what everyone else has done to find a good babysitter!!
While I am not familiar with the world that you live in, are there other parents in your area with children with special needs that have similar symptoms as Parker? While my children are not special needs kids, I do a kid swap with another family with young kids. I watch their kids once a month so they can get out and they watch my brats, I mean kids, once a month. I’m not sure how that could work with Parker, but I’m sure there are parents out there with special needs kids that are dying to have a nigh out as well.
We hire 1 or 2 college students who come in and learn all that there is to taking care of Samuel and then we can feel comfortable leaving him with them. But Samuel doesn’t have all the issues that Parker does and the girl I use sees Samuel for a few hours each day and helps with his therapies while I’m here. So when it comes to leaving him with her a few hours a week, it’s really no big deal because she’s so used to him. I’m not sure what would work in your circumstance.
We’ve used his therapists…CNA’s…nursing students. Right now, we have a friend who has finally landed back in our area after traveling around, and we’re able to get out for 5 hours at a time twice a month. Max gets respite services through his medicaid waiver, so we get 30 visits, at 5 hours a piece, and the agency we use to “employ” our friend does all of the paying, and keeping track of hours, as they are an approved waiver program provider. Then, we pay her $20 on top of the $40 she gets from the waiver. $40 a month is a small price for us to pay to get to get out of the house for such a huge chunk of time! It helps that she can come to Max, in his comfort area, and away from other kids. She’s trained with his feeding, suctioning, diapering, medicines…we’ve been working to get someone like her to watch Max for 7 years!!
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That is why I quit work. Jake had so many health issues and was always sick. He had behaviors that people couldn’t deal with, and sitters don’t like kids that are in diapers after the age of 3. ETC. Even after he was in school he missed so much school I couldn’t get a job. Employers don’t like it when you call in sick constantly. I finally found a part time job that was flexible and was to start with the school year 2008/2009. Jake was diagnosed with cancer the week before it started. THAT is how we became a one income family. 😉 I hope that one day I can find that illusive part time job that will work out!
My sister was a pediatric nurse when Evan was born so we only went out when we were at my parents house or my sister was visiting so that she could be around to take care of his ng tube and other various meds. Luckily as Evan has grown we have lost a lot of the medical stuff and have been able to widen our circle of caregivers. I still pretty much only leave the kids with family though.
I know here, children can qualify for nursing services for a certain number of hours per week and I do think they can be used as “respite” hours (but provided by a nurse- not simply a respite worker). Basically so mom and dad can get a much needed hour or two of a break!
I would ask to see if you could qualify for something like this (I believe these hours are provided by a private nursing service). That way a qualified nurse could come to the home (I’m sure you could ask for someone who had experience with the needs your son has). This, of course, doesn’t make it any easier to trust someone else with a child who has significant medical needs. It is important to find some time to relax and recharge though! I know this isn’t an easy issue, though!
Tammy- I linked this as well as your last post on my facebook page for How Long is this Hall. Hope you don’t mind!
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Nope never go out. Not for 21+ years. I’ll never forget the one weekend that TJ had to be in Peabody in Baltimore and Matt had a hockey tournament in Pittsburgh. We hired a nurse to stay with Sarah. The light was already flashing on the phone when I entered the hotel room with TJ. It was the nurse. Sarah was wheezy and getting a slight fever and she was paniced. The next plane back to Cleveland was not until the next morning. I was a basket case. Not worth it. That was the past time we had someone stay with her other than her two brothers and then very rarely and only if she seems in really great health, even to this day. John and I also very rarely drive in the same car, just in case.
We have not had any problems finding sitters for our daughter with DS. We have even left her for a week at a time for a few trips. But we are fortunate that she is generally very healthy. The baby sitting issue has been on my mind for the future though. I hate the thought of getting a sitter for a teenager! We like to go a lot and need those breaks from the kids. If you lived closer I would watch Parker for you! I am an ICU RN and am comfortable with trachs, vents, FTs and all that stuff! Having Macy has definitely made me more aware of issues like babysitting for kids with complex medical needs and so I have tried to offer babysitting for a few friends nearby who have kids who are technology users. I would love to help them out!
Is Parker on a waiver waiting list for your state? Email me privately and I will give you more info.
The biggest hurdle for us involves eating. You can’t just trust anyone to feed Nana, because she chokes, and they need to know what to do. Heck, her school still feeds baby food, applesauce and yogart unless the feeding SLP is there- and she’s 7 years old!
The most successful sitters we’ve had have been adults, and frequently nurses, or nurses in training, or children of nurses who’s moms are ‘on call’. We’re medical people, so we’ve sporadically found people like this, but it is a struggle, I won’t lie. We used to heavily rely on my mom, who is fearless with Nana. Aside from family, it’s tough, though. We have a hired sitter probably a couple times a year and only for big deal occasions. Of course, I could find sitters for my other 2 pretty easily, but Nana is always the cause for me to pause. You can’t be too careful.
I just wanted to comment on how beautiful/handsome Parker is, thank you for this information. Our son Liam is almost 2 (4/9/09) and he’s my 5th but the only DS child I’ve been around we’re a lucky family I”m always looking for way to improve my knowledge for him so thank you again for all your information!
If we could afford it I would probably do it but right now it’s just not in the budget so we go out separately. I would leave my mom with him if he was asleep but I think 29lbs is too heavy for her to haul around.
Tyler doesn’t have horrifically scary medical needs. In fact, what needs he does have, we wouldn’t leave if we knew he was having a issue. What kills us is that he is different. It is hard to find a sitter when he has a hard time communicating, he walks differently and is just different than the typical 5 year old. Even when we had respite we found it hard that they would want to come on the weekends or at night. It was their “day” job. We moved back to Utah to be by family and lost our respite services and gained family and it still doesn’t work. We can’t get anyone to watch him without it being a total inconvience for them. They make it seem that way. I have found the stress on our marriage is much higher when we have family around because they don’t help. Plus I have a hard time taking hm to someones house for us to go on a night date when he has a bed time with meds that wreck havoc if not followed.
We do like you guys. My husband takes care of our 4 kids (1 w/Down Syndrome) and I go out or vice versa. Works for us right now. Many folks wonder why we don’t have ‘date night’ but none ever offer to babysit. My inlaws used to do it when we were at 2 kids but 4 overwhelms them.
So I totally understand.
Jan
Hi everyone,
I found this post because I googled -Watching special needs Children. I am looking to be a mothers helper for someone with a specail needs child. I thought there might be some kind of website for you all to post what your needs were or to find specially trained people to help, but from what I am reading above, it doesn’t seem like such a thing exsits and if it does, none of you know about it. I don’t have any official training, but I love children and have always had a soft spot in my heart for those with special needs. I did Daycare years ago and have worked with children with Autisium, speech delays, emotional issues and Spina bifida-He was nine and I had to catherize him several times a day,-no big deal to me. I also work in our nursery at church with kids ages 18m-4yrs. Some of them have had specail needs too. I am willing to get basic training and def. need to update my cpr, but mostly, I would just like to be a helper-Someone to watch your child while you get other things done, while still at the house, and then depending on the needs of the child, maybe even leaving them with me while you run local errands. Where do I go to find people like you with these kinds of needs? I Live in PA. Also, what is the going rate for this kind of service, or what would you be interested in paying? Now that I have written all this, I am not sure how I will see any answers? Could you please email me priv. at Tiggermom3@hotmail.com, and put special needs in the subject, so I don’t accidently delete it. Thanks for all your help! I really want to help people in your situation out, I just don’t know how to find you.
I am so happy I found your website/blog post. I am in the process of fighting with my insurance company to not completely cancel our PDN for our daughter, Riley – she has a trach, g-tube fed, hearing loss, cortical vision impariment, etc. They want to bring us down to 8 hours and are committed to the fact that anyone train and care for our daughter. However, when I tried to get a HHA or CNA in the home, every agency I have contacted said they will not allow anyone but a skilled nursing professional in the home (as long as Riley still has a trach).
Although we are in the appeal process now, I think it may not go through this time. I am exploring the possibility of training nursing students or a retired nurses but not sure how to safely go about this or what the going rate would be… We can’t afford PDN nursing and we both work. The only willing candidates who have been trained to take care of Riley are my parents.
I live in Connecticut and I have tried for SSI, Medicade and CHIP- we’ve been denied several times. Any suggestions/help would be greatly appreciated. Thank you, Jennifer
I do not know what area your in and I did not read all the replys, so maybe you have it all taken care of by now, but getting an in home nursing service could be very helpful, if you have medi-cal or coverage to pay for it, he would definitely qualify. My son has trach, g/ jt, and all the same equipment and needs. It was a long stressful process to find nurses that were trustworthy, and not total weirdos to be honest. But, once we found two that we really love all of our nights are covered with nurse care. I am an at home mother of three boys, Gage is my 3 yr old with the medical needs, and then twin boys, who came in feb 2012, not due until end of may. Like I said I do not know where you reside but anyone who needs help with watching a child with trach needs I am always willing to offer my help and time. I have help And have the time and skills to take good care of a child like yours.