Ten Points of Contention

1. Construction – I hate construction.  They are building a huge apartment building next door and the noise wakes my baby up in the middle of  EVERY FREAKIN  NAP!  I asked how much longer they would be in construction and was told by a nice, thickly-accented  gentleman, “Ten minutes,”  which was followed by smiling and lots of nodding,  on both sides. Charley found someone else and asked the same question. He was told they had three more floors left to build. Three more floors! Charley said if the thing gets any higher, God will have to strike them with language confusion. From our conversations, they’re already there.

2. No Daycare – We still  haven’t found a daycare.  I  leave for work at 6:30 in the morning and get home at 12:45 Monday  through Friday. I have two  nannies right now:  one leaving this month to have her baby next month, and  the other staying through as  much of the summer as her pregnancy will allow. Hopefully her baby will not be an early bird, since every time Laelie gets a friend, I lose a sitter. :)

My hope was that  Laelia would be in a daycare where she could be socialized.  I know kids raised with other kids  pick up language and motor skills faster. Plus Laelie could get  a great immune system from all the free-floating germs. :) But most importantly, I would love to see her in a group of mixed friends who grow up with her for a few years so she doesn’t feel alone or ostracised. So if anyone knows anything about a daycare willing to put in some extra time with a special baby, we’d love to hear about it.

3.  Looking for Daycares – Well I called every single daycare off a list within ten miles of my zip code, my work’s zip code and the route to and from work. Then I Googled more and tried them.  I was declined by every single one. If  I found something that  took her age group and  whose waiting list was shorter than six months, I  only then  told them about her special needs. It  got me so depressed when I would hear their  voice change, get accusations of,  “That’s not fair to the other children,”  or just pass me off to their manager/supervisor who would get me off the phone.

4. The System- I then  signed up with a daycare finder organization. They said they couldn’t find one single place for me. They then said they were fairly new and to try calling around (which I had already done). So  I next  signed up with a government daycare finder to find me federally funded daycares.  They couldn’t help me. Together We Grow was mentioned, but they won’t take my daughter. They did give me the number for Easter Seals and told me that even though they didn’t think Easter Seals did this sort of thing, maybe they would have some advice.  Then I bugged the YMCA, First 5 Advocacy and Exceptional Family Resource Center. I’m already in the YMCA’s system and the lady  there was  really kind. She is even looking for old contacts she used to know.

But pretty much everyone has “helped” by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers of contacts who, once called, can only help by giving me numbers  of contacts who, once called, can only help by giving me the number of the first person I contacted that begun this insane process in the first place.

But moving on with my points of contention…

5. KAFOs – They still don’t work. Enough said?  

6. Mean Anonymous Emails – See previous blog, “Cyberbullying.”

7. EMG Testing- An EMG test is when they stick a thick needle into your muscle for the sole purpose of shooting electricity through it in order to measure how bad it is. Laelia’s EMG is scheduled for July 16th. Charley and I decided that he should go without me. The test will only spit  out depressing results and require calming down a  Laelie-faced pincushion.  I realized I didn’t want to know the results. We’re only doing this as one more hoop we must jump through anyway. This isn’t leading to a cure. This will be the first medical thing I will have skipped. I have mixed reactions of relief and guilt.

8. OT/PT – I called last week to cancel my appointment because baby didn’t look like she was feeling well and needed to sleep through it. This led to my  accidentally getting kicked out of their system when they cancelled  all of my physical therapy appointments  from now until the end of time. Effectively also losing our  time spot which was then filled by other people. And we realized that our OT had paperwork that had not gotten to our insurance. Which led to OT also being cancelled. Oops.  So for over an hour  I’m waiting at Children’s with my Early Start representative who had come this one and only time to view Laelia’s therapy sessions. *groan*

I spotted a woman who looked unfamiliar (but of course I’m never in the waiting room all day), wheeling her son out of the therapy evaluation room. Her son had the tell-tale skinny arms and legs with crooked wrists. He was also holding up his end of the conversation with his mom, so probably not mentally disabled. Thinking it might be similar to what Laelie has, I asked the woman what her son’s diagnosis was. She immediately stopped walking and looked at me like  a starving person looks at  a steak.  She tearfully told us, my empathic Early Start Rep and I, all about how her son was born perfectly healthy and whole. She was rudely told by an impatient doctor (over the phone!) that her son had a very rare condition that hadn’t been seen in Children’s Hospital since 1976. He would go through these terrible stages next and there was no cure. Sorry and have a nice day.

Unlike  Laelie who was born looking the worst and  has slowly been  straightened out, she has a son who went  from running around seemingly  healthy and  whole  to slowly losing abilities and  becoming  crippled. Not only that, but she was from El Centro and had commuted a long way to try and get seen by a physical therapist since there were none in her area. We stayed and talked. I couldn’t help thinking that this person needed to spill out her heart. Later as I was dealing with paperwork I thought, “God,  did you screw up  all of my therapy appointments, putting me through weeks of paperwork hell,  just so I could encourage one person?!” Maybe.

She told me about her son. She told me how she was forced to become a stay-at-home mom because of her situation. She told me how she now fully believes that it takes special parents to raise special kids. This is something I’ve been told a lot but actually  never believed. I think kids are lucky to get special parents. And this kid was definitely one of the lucky ones.

9. IHO  - In Home Operations has me on a huge waiting list. I have an advocate who called up the IHO people with me so they could hear what I go through. I was told that IHO is like a hospital waiting room. The only way to get seen is if a bed is available. The only way a bed is available is if someone is better (gets magically cured) or dies. The IHO lady informed me that we are waiting for a LOT of people to die before Laelie will get seen. And then she may be denied. Then when I asked if there was any way at all to get higher on this list, I was told that my baby “wasn’t that bad,” and that there were other people in the world worse off than me. Then she made if very clear that I was wasting her time. When we got off the phone, my advocate could only say, “Wow, I’m so sorry. This is a dead end.”

Having an advocate has been encouraging in some ways. I found out that I discovered a lot of programs that most people don’t find without help. I also found out that I had done almost everything the advocate would have had me do. Now it was a matter of going through it all and doing it all again with the advocate on board. Mostly this has gotten me nothing, unless you count advocate sympathy. My poor advocate seems to be a bit discouraged now. I haven’t heard back from her in a while.

10. People  Who Shouldn’t Work in This Field  - Don’t work in organizations that help disabled kids when you have no empathy whatsoever toward them! You end up saying really stupid things. Like when  I call to ask one  question, you interupt  in order to rattle off a list of your organization’s by-laws. This is a big filibuster because you don’t know how to help my child. Well she doesn’t fit into the system. I get that. If you aren’t willing to help me figure out what to do next then just say so! And please PLEASE don’t follow up your spiel with, “It’s not like Lee-la is suppose to be running around at this age anyway.” Oh really? Then why am I even worried about her future? Thanks, you’ve really cleared that up for me. Now I can get back to  my bon-bons and reruns.

*cough*  

So it’s been a hard couple of weeks. Just had to vent. :)

3 Responses to “Ten Points of Contention”

  1. Melissa Rowe says:

    If you can’t find a daycare and you need help when the summer ends, I might be able to help if you’d want. I currently have no job – school is my job, so my hours are obviously self determined. I do have to sign up for fall classes pretty soon, sometime this month I think. Right now i have summer classes that occupy my morning – noons, but they’ll be over in 4 weeks.

    I really don’t know much about babies and have never changed a diaper or babysat a baby. But I do love kids and I’m sure I’d learn if you were patient with me ;) I know a lot of people don’ t have the kind of time liberty that I do so I just wanted to let you know that I am able to help out if you do end up needing it.

    But my prayers are with you in finding a suitable daycare for Laelia. If I had one, you know Laelia would be in!

  2. Kristin Hetrick says:

    Alexis…first of all huge huge hug from me…I feel your frustration, deep in the pit of my insides. I’m glad you’ve partnered up with an advocate, I hope that advocate hasn’t just “passed the buck”. Wish I could step in and help with your precious Laelia.

    I will be doing the Children’s Hospital Speciality Crawl (funny I used to do pub crawls and look at me now)…from ENT to Pulmonology and who knows perhaps Radiology (for good measure) or the Med/Surg floor?? tomorrow as Emma has contracted Croup..(in the middle of the summer..who knew??) and another possible sinus infection. I will try to call during my marathon…hang in there! Sounds like we need to connect, even if over the phone

    Kristin

  3. amanda jimison says:

    hello. i wanted to let you and charlie know how much i LOVE reading your updates, so thanks for the insight into your life.
    and…I’m sure you’ve thought about it, but just in case you hadn’t… you might want to look into nanny-shares. if you find another family in your area who needs a nanny too then laelia will get to hang out with other kids, but less then in a day care, and it usually cuts the cost as well.
    Its scary at first, but craigslist usually has nannies and families looking for the right person. You can do a more extensive interview once you find someone you like to make yourself feel better about finding someone over the internet. (I’ve been a nanny for two different families that found me on there.)
    just a suggestion.
    i hope a good week follows.
    Love, amanda

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