Edwin and Serena received home care nursing in our home because they needed oxygen....24/7 at first, and gradually have managed sleeping without it two years later. Nursing allowed me to work, which is how we have health insurance and money to pay our bills.
But we are now faced with a problem...Who will watch the kids once we lose our nursing? Which will surely happen soon since they are technically 100% off O2 WHEN healthy. We can't send them to any day care for a number of reasons.
1.) The risk of illness (don't even have to get into this if your preemie has respiratory issues like ours.)
2.) EI comes to our home to do therapy. Where will they do therapy if they go to daycare?
3.) What daycare will take children who have a history of respiratory distress and may need O2 if they get a URI? They need breathing treatments at times. Albuterol increases heart rate and must be used carefully.Sometimes they need pregnisone. Who can I trust to administer this to the kids?
4.) Serena is clumsy and needs to be watched closely. She cannot walk down stairs, but thinks she can. Needs to have one-on-one care when going outside, down stairs, etc.
5.) Edwin is basically nonverbal...does sign and attempts words, but not like a typical 2 year old in the least. Who will one-on-one teach him sign and show him his picture book and encourage verbal language?
Edwin does not walk without the support of his reverse walker, which he needs to be constantly supervised with because he is not proficient with it yet. Edwin needs someone to put on his AFOs and take them off, check for red marks, practice standing with AFOs, etc. This takes some amount of skill to do well.
Edwin "w" sits if not corrected by someone. (Cannot rotate his trunk to get from crawlng to sittng on his bum on his own.) Someone constantly needs to sit with him and "fix his legs" so that he can use his trunk correctly and not sit in "w". How can this be accomplished in a day care of multiple children?
6.) Edwin has low tone in his mouth. He tends to overstuff his mouth when eating. He needs to be very carefully monitored...needs to be encouraged to self feed but watched so that he doesn't choke. Who can I trust with this?
I have called everywhere in my area. There are ZERO daycares that deal with children with medical and/or special needs!!!! We might get covered for a home health aid to care for Edwin in the home because of his multiple delays and needs, but they will not care for Serena...meaning I would have to separate them, which I DO NOT want to do. They are too "healthy" to continue with home nursing, and "too able and healthy" to meet the requirements of a medical daycare; and yet they are "too needy" for me to send them to mainstream daycare.
We don't make enough to justify hiring a nanny, and I don't 100% trust my MIL. She doesn't speak English which would also pose a problem in encouraging Edwin to use verbal language. My parents work full time jobs...not an option. We have no other family around that could care for them.
So, we have all of these needy preemie being discharged every day and yet do not have daycare facilities that are appropriate for them, with their developmental issues, sensory issues that many have, and ongoing medical issues.
What are these parents suppose to do?
As for me...it makes sense to not get married, quit my job, get free healthcare and SSI, and care for my kids myself. (Probably not my choice, but I'm not ruling it out.)
Ok, Ok, so we're not completely out of options. Edwin's mom could watch them both if we were in a bind, or we could have her watch Serena while the home health aid cared for Edwin. But this is a problem for families, and I believe there should be special and medical need daycare facilities staffed with nurses, OTs, PTs, and STs. There should be a daycare option for kids like our for preemies, and other special needs/medically needy kiddos.
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6 comments:
This situation SUCKSSSSSSS! I totally agree with you and I am so grateful that I was able to find a nanny who is competent and able to handle both of my boys' special needs.
Do you have any colleges or univerities nearby? Perhaps you could look into their early childhood or special ed. teacher training programs and see if there are any good students (or grad students) who need a job. You may need to be creative and hire two or even three of them to cover the number of hours you need, in order to accomodate their class schedules, but they would be getting great experience! College kids can be a great resource because they are usually eager to try out what they are learning in class, they have energry and want to build their resumes and get good references.
Also, do you know any other moms who have a nanny? If so, ask them to ask their nanny if they know any other nannies....lots of times they do and they can help connect you.
I wish you tons and tons of luck!!
Oh do I HEAR you on this one! We have a medically fragile/special needs preschool here, which Emery will (or can) attend because of his G-tube and delays - at the age of 3. What are we supposed to do until then? Fortunately for me, I work second shift and hubby works first, but this is also not ideal, it's just what we have to do.
One option you can try is to see if your benefits could be extended due to medical necessity - at least for Edwin needing specialized equipment. Your pedi could perhaps write a letter to help.
Another you could do is try to find a second shift job and then see if your state offers insurance benefits. (my crappy state does not)
Let me know when you plan to lobby congress. I am so there with you. I'd drop my kid off at the White House, but I don't really trust them haha!
You know I can so relate to this (by the way, I think the preschool situation here is similar to what you described in your comment on our blog, but they cannot give meds at all in any preschool except for the much more intensely special needs one for which we don't qualify because Hallie isn't quite needy enough and it's not clear at all how to handle the food allergy/feeding issue. ST and OT in preschool would be fine, but feeding her in a high chair, not clear).
Anyway, back to your situation. It sucks. Which, of course, you know. We were extremely lucky to find a competent nanny (several others we interviewed and 'test ran' did a horrific job, undermined us by ignoring our instructions, ran screaming from the house when Hallie inevitably vomited, etc). But the cost of this great nanny is equal to our mortgage (I was shocked to find this to be the case, and allow me to assure you that our mortgage is fairly substantial) and between the two, it totally wipes out my salary. And that's for three days a week. It's a lot of money, and we have a lot of other bills besides those two expenses (feeding Hallie, feeding us, heating the house, car payments, student loans, credit cards, and the list goes on). So we've been doing some creative juggling and for the most part sort of get by, more or less (usually less, and sometimes a lot less) every month. But it sucks. A good daycare in our area would cost 2/3rds of what a nanny costs, except it would be full time. And a decent daycare would be half the expense we lay out for Ami.
Anyway, enough kvetching. I second Melissa's suggestions about students or grad students--you might even ask the therapists who work with S. and EJ to see if they know anyone. I know that our speech therapist used to nanny, and at least then you'd be getting someone trained or training to do threapy, too. And nanny shares are a great idea. Perhaps your MIL can be around during a nanny share situation to help out a bit and that would take the pressure off of the nanny who would be handling more than two kids at once.
Man that sucks! The one thing I can tell you is that most of the time EI will come to day care to work with the child. Of course there are a whole slew of other reasons why you can't put them in day care but for your own knowledge, EI will go to their day care.
I wish there was some easy solution you're not thinking of but honestly I don't know where else you might look for child care. I know here there's a special needs day care but there's a wait list years long! I like Melissa's idea about looking for a college student. Sometimes you can find one not only relatively inexpensively but also someone specializing in special education. Does your EI cover any respite care? Something to at least give you a few hours?
I'm so sorry you're in this spot!
Hi Steph,
Please keep us posted on this issue. I feel you on this one- it is hard!
Randi
I feel your pain. This is exactly the reason I quit my job. Luckily we get insurance through Robert's work. But childcare is expensive and my income does not cover childcare. I decided to stay home because like you said, I think I do a better job than anyone else. I rather have a tight budget but good care for Michael.
Michael has therapy (outside our home) 4 times a week, who can you trust to do that and then do the 'homework' with them at home? It's a hard choice, because being at home with a child can also become very lonely at times.
If you can rely on a parent or another family member, that would be a good solution for you to perhaps work part time.
But if you can figure out the healthcare, it might be better for E&S for you to stay home with them for at least the next 2 years.
I know it's a difficult situation, but on the other hand, your children are progressing: no more O2!!!
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