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In desperate need of parenting advice about daycare for emotionally sensitive 15 mo old

Posted 01/28/2013

Boy, this is going to be long.  My son is 15 months and is very emotionally sensitive, as I said in the title.  He gets easily overwhelmed by a lot of noise or chaos, and prefers a routine.  He's never been one we could have nap at a friend's house, etc.  We always had to be home for naps or else he would become extremely cranky.  He gets easily upset and is difficult to soothe.  He didn't nurse past six weeks, completely refusing the breast.  We basically force fed him bottles most of his first year, and even now we have to use a lot of distraction techniques for him to finish 3 botltes, totalling only 17 oz pumped bm a day. He would never take a bottle out in public either.  He would basically refuse it until we got home.  Solids are still very hit or miss.  He is not eating or drinking enough, but we are dealing with doctors on that.

We've had medical issues from the get go as well.  The feeding issues basically seemed to be caused by reflux and GI pain but they could never figure out what it was.  We dealt (and still do, to an extent) with oral aversion, which is highly stressful.  DS is also developmentally delayed in most areas, other than seeming to be of average intelligence and receptive language.  At almost 16 months, he is not yet close to walking and does not talk.  He just started using his first sign very recently ("airplane").  He has days where even with me and DH, he seems to be still in pain and very very uncomfortable and needy.  On those days or during those times, he basically fusses on and off no matter what we do.

He was recently diagnosed with mitochondrial disease which I'd never even heard ot.  It's very confusing because every child with it has a different set of symptoms, but basically it means his cells are not working as efficiently as they should.  For him, it results in the delays, muscle weakness and fatigue, chronic constipation (which has been greatly helped by coconut oil!!), reflux and difficulty swallowing, and lack of energy.  The dr. said that the biggest concerns right now are watching for dehydration, making sure he eats enough, and keeping him from getting sick because his body will not be able to recover as easily as a normal child's.  Stress on the body systems can also affect him.

Whenever we try to leave him at the Y daycare or church daycare, he screams bloody murder to the point of hysteria.  He does fine one on one with a babysitter in our home, but not in a group setting, no matter what we do.  We even attend a playgroup at a local place called O2B Kids and he's great if there are like two other kids there, but even with me right next to him, if the room is full, he can't handle it.  He gets very upset, clings to me and cries the whole time until we leave.

By God's grace, I was able to take two years of leave from my job, but I have to go back in August.  I was trying to decide between a large daycare setting for teachers (cheap but very well run and a great program) vs. an in home daycare and posted about it, getting great advice about him needing the in home which I was in total agreement with, especially after visiting the one at the high school.  However, after trying to go to a moms group at a local church today that had a nurserry with five babies total and two women, and the fact that he had a complete meltdown, now I even wonder if I can put him in the in home daycare, which has one adult to six kiddos.  When he gets upset like that, he is burning calories he can't afford to burn, and getting dehydrated, and he won't repenish himself by eating or drinking more.

I guess I just don't know what to do.  I am at a loss.  I can't blame his neediness on the mito disease, as I think it is personality but I can't help but feel guilty and that I've done something wrong.  I get the impression that people at the church and Y think I should just let them let him cry the entire time so that he'll get used to it.  Even before having the diagnosis, I didn't think that was a good idea.  Am I wrong to always go get him after he won't stop crying for them?  Does anyone else have a kiddo like this and did it eventually get better?  I mean, I HAVE to go back to work and he WILL have to go to kindergarten eventually but I really don't want to do anything to traumatize him, or cause his illness to be more a problem for him than it already is.  Does anyone have any suggestions for me?



EPing SAHM to DS Lennon, 10/5/11! First four months were reflux hell, but now I'm having fun with all the smiles and laughs!! - Staci

Comments (16)

1 2
Last edited 01/28/2013
Can you find an inhome care worker? Someone who will be alone with your child and can guarantee attention?
Posted 01/28/2013

Is there any possible way you could afford a nanny? That seems like it would be the best decision. Maybe even if you could find a SAHM who just wants to watch one other child other than her own kid, which wouldn't be ideal, but better than the home daycare a little. That sounds so tough and I hope you're able to find a solution.

Posted 01/28/2013
Do you work with Early intervention? Maybe they have some suggestions? Fwiw, I am an early childhood special Ed teacher and I've known a child with mitochondrial disease ( he wasn't my student so I didn't know him well). He was often inconsolable, and his teacher was so caring and would never have just ignored his cries. My point is, is it possible that sensativity or sensory processing issues etc might cause kids with mitochondrial disease to cry often? Please don't think you've created this probLem. Being an ap parent has probably been exactly what he needs!

N, mom to Little E (33 weeker) 8/05/10

Posted 01/28/2013

You have done NOTHING wrong! I agree that the idea of sending this little one to a big busy daycare does sound scary. I know a lot of his issues are about his medical concerns, but "Raising your spritited child" has specific sections about different sorts of challenges some kids have, like being really sensitive to sensory overload or changes in routine, etc. I just read her book on sleep, which addresses some of that, and I want to get her spirited child book next. I think it could have some ideas for you! Here's a link to the book on sleep, which might also be helpful since much of it is how to have a more relaxed/calm day for various kids since that helps them sleep better at night (but check out her other books via the link too): 



Posted 01/28/2013
Is there a chance you could hire a one on one babysitter for when you work?

And no, you are not wrong to get him when he cries. Hes communicating with you and his body cant afford to.expend that energy. Have you tried finding a sitter via a website, local grad school, etc?
Posted 01/28/2013
I agree that finding a nanny might be best all around, but I did want to add that at 15 months...heck even now at 34 months, leaving my very healthy, easy-going, social butterfly DD in a daycare that she is unfamiliar with will cause her to cry inconsolably. It's hard, but they do need time to adjust. When she started daycare at 17 months, it took a full two weeks for her to not scream at drop off. :( I hope it works out for you!!
Posted 01/29/2013
Thank you guys. It makes me feel better to know that it's not my fault, and that there are other kiddos like this. Our sitter is a college student, and she has offered to try and get T/R classes so that she can watch him M/W/F, and I am looking at the possibility of going back three day per week. We would love for that to work out, because she is great with him and he loves her. We won't know until July, so that's cutting it close if she doesn't get the classes she wants and we have to find a back up, but we're just praying that it will work out.


Posted 01/29/2013
We always thought we would use daycare but wound up making the financial sacrifice for a nanny because LO's personality and our parenting style. It's really been worth it, though I understand it's just too expensive for some families. If it helps, you can use up to $5000 of tax free money put aside in a dependent care FSA to pay the nanny, as long as she's only proving care, not cleaning, Etc. we used and have bed really happy. Good luck!
Posted 01/29/2013
Wow, you really have your hands full! My DS is about the same age-16 months and also very fussy and sensitive as you put it and hates to eat, so I feel your pain! All the other challenges he is facing right now sound so overwhelming. I'm sorry I don't have any advice, just wanted to say it sounds like you are doing the best you can and try not to get discouraged! Hang in there and things will get better!

PS I absolutely love the name Lennon:)
Posted 01/29/2013
I hope I am not being to forward but don't put him in a group daycare. The home care system is not regulated and given you childs needs I feel a home care person would eventually leave you hanging indicating they can't fulfill his needs. Public daycare might be the same but the ratios sound to high for him. Look for individualized care options like you described either you part time or a nanny.

Then seek out some of the special needs blogs to build yourself a network.

Finally, consider an IEP plan.

my friend has kids with special needs and the local public school system picked him up prior to age 5 and the bus shows up at her house. Something to consider.

And no you aren't doing anything wrong. I would never let a child cry and especially not one with a medical issue.

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