Special Needs
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Surviving two SN kiddos with full-time jobs in tact

Both dh and I work full-time, so when ds was born early and with many needed medical appts, surgeries, and therapies (up to 5 per week), it was a LOT to manage and maintain our jobs, but we somehow did it. We were very grateful for generous bosses and flexible schedules to get through. Ds is doing very well now (will be 3 yrs in Jan) and only needs some minor OT and oral motor help. That said, dd, who is 10 months, was diagnosed with severe hearing loss last month. We now have a much fuller understanding of what that means. We started her in weekly auditory-verbal therapy, but now realize that in order for her to get the hearing, listening and language that we want for her, it is going to be a full-time effort. She was at a daycare center that she did great in, but that just isn't going to cut it now. We could hire a nanny, but the truth is that neither of us trust a nanny. There is an amazing oral school for her that she can start in September, so we just need to bridge the gap somehow until then. I really want to stay home. But I am active duty and can't take unpaid leave, and we depend on my insurance which is a very critical part of all of this. This area is also so expensive and I bring in more than dh. So that leaves dh, who is now about to ask his boss for 3-4 days off per week until September... I will use my leave to take 1 day per week as much as possible too so dh can stay somewhat connected to work.

We are just so tired and overwhelmed, but we need to make this happen since her future depends on it. Anyhow, just wondering if anyone else has been in a similar position with work.

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Re: Surviving two SN kiddos with full-time jobs in tact

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    We kept two jobs for the first year, but we were always so rushed and harried, we weren't enjoying life much. I quit about six months ago, and it's really helped things ease up for our family. I say, do what you can to make things work the best you can, given your situation. There are no right or wrong answers here, just what works best for your family, and sometimes it takes several tries to figure out what that is.
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    I have twins with autism. Both DH and I work full time. He works second shift and I start at 7am. He has rotating days off which helps for appointments during the week but it suck during the weekend when I'm alone to do everything else.
    It's exhausting but we don't have any other options. DH bring more than me and I carry the insurance.

    Good luck!
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    It wasn't possible for us, because I have to be very flexible for my job, H was working 70 hours 1pm-1am (2 hour commute) so we could go 6 days without seeing him.  Now he works 3am-3pm with a set schedule.  
    If our appointments were more therapy oriented still, and not specialist a, b, c who only see patients on this day at this time outpatient, then it might be different.
    Good luck!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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    We have had great luck finding special needs caregivers on care.com. To gain trust, we set up a nanny cam. It doesn't record audio but is a live feed that I access from my phone or web browser. Our sitter knows about it and so do all of our therapists. I love being able to check in any time of the day. 
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