In So Many Words

I want so much to write about all the things that have been happening in my life, but I feel like it’s all happening so fast and my perception of what’s going on and what to do about it changes hourly, so it’s a virtually impossible task!

So that’s a glimpse into the whirlwind.  The most important thing is that now I have some peace in the midst of it.

Even with the stressful IEP meetings over and the stress of our kindergarten-year schedule coming to a close, I am still finding it hard to put together a coherent sentence. Which in turn makes it hard to turn any of the ideas swirling around in my head into something worth posting here.

So I have decided to cut myself some slack (for once!) and take a break from posting here for the next few weeks. I may still pop on to Twitter or find myself rambling and venting nonsense over at Autism Interrupted, but then again I may just take Michael to Hersheypark every day in June and never even turn on the computer!

Here’s the proof that I am in need of some serious R&R:

Your Mind is 83% Cluttered

Your mind is incredibly cluttered. You have so much going on in there, it’s hard to think straight. Consider talking to a therapist. It’s a good idea to sort through your thoughts, if only to see which ones are worth hanging on to.

How Cluttered is Your Mind?

I just spent two hours working from home because my son has a doctor’s appt this afternoon and I will be going in late.  I can’t tell you good it felt to be making some inroads on the pile of stuff needing to be done.  Most of my work time right now is being spent on a new project that has me completely lost and feeling worthless, but after having a total meltdown at work on Friday, I decided to switch my focus until I can get my equilibrium back and hopefully get the direction I need from the powers that be.

I have been feeling lately like I just want off the treadmill, that there must be some way to make my life not be so stressful all the time.  But I know that really the feelings of stress come from within me.  Sometimes I feel energized by everything I need to do, and excited about diving into new or difficult challenges, and other times I get teary-eyed just thinking about having to start a hard project that’s on my list.

Case in point, we have an upcoming IEP meeting.  The team of people at my son’s elementary school is very supportive of him and willing to listen to what I have to say, and I pretty much know what I want to happen, but just getting it all together in one clear, concise list is proving very difficult for me.  A friend and I sat down and went through my notes, and she even studied them herself and emailed me her thoughts (a huge help!), but lately when I start thinking about the future, I get a little panicky about all the things that could go wrong.

My biggest issue with school is my frustration with the inconsistent follow-through across settings, largely caused by the (I don’t want to say lack, because they do try) need for more support and education of the various teachers.  I have lots of ideas to be proactive and do what I can do to help, but all the other pressures of life keep squeezing in and then I am up against the gun and not ready.

It’s the same thing with blogging; I get lots of ideas but then if I don’t get them down on paper right away, I have trouble recreating them later.  Maybe I need to get one of those mini recorders, although I tend to ramble (have you noticed?) and it would take forever to listen to everything I thought was important and insightful at the time.

Things aren’t all bad, by any means.  On Saturday, I had the privilege of attending a women’s luncheon for autism moms at a local church.  It was a wonderful event, and the speaker was a fellow blogger, which was pretty cool.  Her name is Ginger Taylor, and she blogs at Adventures in Autism.  She really shared her heart with us, and it gave me a lot of food for thought.  I wish we had taped it so I could hear it again; there were so many things I’m sure I didn’t completely get the first time.

The whole afternoon was such a blessing and was made even better by the fact that my husband had taken my son away for the weekend, giving me some much needed quiet time.  What a great guy!

I can hardly believe how long it’s been since I posted – April has been a whirlwind of a month.  It’s that time of year when I am trying to work on summer plans (childcare, summer programs, possibly vacation), right in the middle of getting ready for a new IEP. 

Plus there have been several autism-related events that I am involved with to some degree. In fact, I am writing this as I print out table tents for the mothers’ luncheon taking place this Saturday.  Wouldn’t you know it, right when I started to work on these the other night, we ran out of ink in the printer, so I had to make a trip to the office supply store for that, which I did this morning while picking up the supplies we were missing for our ASD HOPE workshop tonight!  Luckily, I had the foresight to ask for the day off, especially since we are taking our two speakers to an early dinner at 4:15.

I am so relieved about the meeting tonight because we are bringing in the speakers from out of state and didn’t have very many RSVPs at this time last week.  But now we are up to over 40, plus we are going to be able to record the presentation and have DVDs made of it.  So the investment will pay off as we have the DVD to share with new families interested in learning more about biomed stuff.

Work has been a bit stressful as well, with a new responsibility that is actually taking up 75% of my time.  It is a new area and I am learning by trial and error (mostly error), plus my other work hasn’t seem to have gotten the message that it is supposed to shrink down to an hour a day. To add to the fun, we recently received a 5% pay cut, which may turn into 10% after another month.

Next week I get to go in for another endoscopy.  I have a small esophagus, and the last time I had it dilated was in 2006.  So I am definitely due for one, and I just started noticing food getting stuck a few weeks ago.  Much better to schedule it right away than wait for something to get lodged in and have to go to the emergency room and have them push it down, especially since they won’t dilate it there and I would have to go to the endoscopy center anyway.

In the middle of all this, God is certainly providing for us, though.  Not an hour after learning about my pay cut, I received a call about a possible side job that I could do in the mornings or evenings.  It’s a temporary position, which works for me, so we’ll see how that pans out.  I was also worried about finding someone to watch Michael and take him to school when I go in for the endoscopy, but then I got a note home that it’s their class field trip, and all kindergartners have to go all day!

I have been feeling lately like I am fighting depression, which is an especially scary thing if you know how deeply this has affected me in the past.  I hate the feeling of being aware of it hovering in the air, almost waiting to descend upon me if I am not vigilant to hold it at bay.  I was expecting to feel this way around the holidays but I didn’t this year, so having it come in January was a bit of a surprise (guess I thought I was completely over it).

Anyway, I am finding that even with the level of anxiety and stress I am feeling, I am still have more energy and motivation than I usually do when I am struggling.  I have been able to do a load of laundry each day for the last few days, as well as catch up on the dishes and make meals (albeit simple ones) for my family.  I have been able to finish up a few writing projects to which I had committed and I was able to pull together and prepare for a team meeting at school.  Even the desire to do those things has often been lacking in my life, let alone the ability to actually follow through on them.

Today I spent the entire time I was at work following up on and responding to emails from the person who took over for my coworker out in Wisconsin who had her twins a week and a half ago. (For those who haven’t heard this in some other forum where I hang out, they were 14 weeks early and one of them didn’t make it.)  So I completely understand that the other person was not at all ready to step into her shoes, but I have to admit it was a bit tiring today.  Tomorrow I am going to have to focus on a couple of other priorities and limit my time with her stuff to about half, if I can.

Tonight I need to do a couple of things still for ASD HOPE, so I’d better get to it.  I think I may have to break down and purchase Microsoft Office soon, or at least Microsoft Word.  Since I got my laptop, I have just been using Open Office, which is free, but I am finding that there are a few things I do where OO just won’t cut it due to formatting issues.

Thanks to everyone who has been sticking around while I whine and complain about my life.  I really do have a positive side; it’s just that sometimes I have to get it all out to have any hope of moving on.  One neat thing – as of today, I have officially been blogging for one year.  I started Another Piece of the Puzzle on January 26, 2008.

I know I said last week I was feeling stressed out, but I never dreamed it would be a whole week before I would get to sit down and write an update.  I managed to get to all my various commitments in this week, and everything actually went pretty well.  All six board members were in attendance on Monday night, and we were able to schedule some events and figure out who was going to take care of which to do items.

Wednesday night, I started a volunteer gig that is going to last for six weeks.  You can read a bit more about it at Life On A Page, where my friend Lisa is going to be blogging about the project and related issues, but basically we are helping several people who have mental illness and live in a group home.  It’s a wonderful thing, and she explains it better than I ever could in her introductory post.

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WARNING:  Whining ahead!  Proceed at your own risk.
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Okay, I’m back after a four-hour side trip to real life, but only to say I can’t really finish writing down all I wanted to say because I am exhausted and stressed out and basically feel like cr*p.  My reflux is acting up like crazy lately, and I am having to work very hard to keep my depression/anxiety at bay – probably because I need more sleep.

I still have a lot of stuff on my plate right now though (sorry I know that’s a recurring refrain and I need to just get it taken care of).  I think I am finally getting to the place where I realize I really can only do so much.  So I am going to look at my calendar and to do list for this week and try to make a game plan for what has to be done.  Then I am going to sleep!

Oh my goodness, I am feeling stressed today.  I am trying to control it but also still work on getting some things done.  Part of the problem is that I haven’t really figured out a good place to use my laptop.  For the last few days, I have had it at the kitchen table, which is good because I am not leaning over like when I have it on the footstool in the living room, but which is difficult because I end up with piles of stuff all over and I am dealing with noise from the TV and a constant interruption of “Mom, can I have…” or “Mom, will you…”

I’ve thought about setting up in the basement where my stamping stuff is.  Maybe I would actually stamp more, and I could also have my files moved down there.  I would still need to bring the laptop upstairs to use it when Bob is not here, but at least I would have a permanent spot for it.

The more I think about this idea, the more I like it.  Maybe I’ll spend a little time cleaning up down there later this week.  Of course, I have to find time in my schedule as well.  This week I have something going every morning except Friday – a psych eval for behavioral health services, the monthly moms’ group at church, my husband’s periodontal surgery, and an appointment with the regular psychologist.  Both psychologist appointments will also include either meeting the TSS or having her at our house.

The evenings aren’t much better.  Between a board meeting Monday night, starting a volunteer scrapbooking gig on Wednesday, Bob’s regular Thursday night ministry at church, and helping at the Chocolate Ball this Saturday, it’s going to be quite a week.  The next two weeks look much quieter, and I plan to keep them that way!

One really great thing is how well Michael is still responding to the responsibility chart we are using.  He is actually upstairs getting ready for bed now on his own – yay! – so I’m going to close this and go up to read stories and talk with him a bit while he settles down.  Usually that little break gives me some new energy to finish out the evening as well.

I hope everyone reading this has a wonderful week.  Blessings to you!

Anyone out there as stressed out as I am? I know I have been AWOL this week online – it’s just been one of those times when you have to step back from everything for a little bit. I have had something planned every morning this week, which makes it hectic but also forces me to get away from the house and the computer and interact face-to-face with other people.

Yesterday we had the pleasure of visiting with one of my son’s former support people; she is doing very well in her new job and it is so nice to have the relationship continue as a friendship. This morning we are going to meet another friend and her two boys at the play area in the mall – something we have been trying to plan for months!

If you really want to hear more about how I have been feeling lately, I poured it all out over at 5 Minutes for Special Needs.

Okay, I’m going to get some chocolate now – have a great Friday everybody!

Remember how I said on April 26th that all we needed for the Little Guy’s summer program application was the sign off from the psychologist?

Yeah, well, it’s still not done, and it’s been almost 2 weeks! My BSC emailed everything over to her so she had it on Monday the 28th (Thursday the 24th was the earliest day it could be sent in). I followed up that Friday to make sure everything was okay and learned that nothing had been done. I called and emailed the psychologist, who was out that day and received an email back on Monday that she would try to have it done this week. The insurance company (Medical Assistance Mental Health HMO) said I can file a complaint but there’s nothing we can do to make her complete it faster, and that if it is done this week, they may still be able to get him in somewhere, even if it’s not our first choice – or our second or third.

I just called and left her a message basically begging for it to be done and for her to call me back. At this point, the most important thing is that he gets in, so I am just throwing myself on her mercy to help us out (and yes, I used those words in the voice mail). Being proactive and assertive and all is great, but I am desperate at this point. If she isn’t going to have it done this week, I am thinking I will file the complaint, and if not, then I probably will still file one once this is all resolved one way or the other. BTW, she still has not gotten the diagnosis correction into his file, and the original evaluation was in January.

So my biggest question is – does everyone with a special needs child deal with this crap all the time, or do I just make life too difficult for myself??

UPDATED later that same day: My BSC just called and she got the addendum from the psychologist, so the packet is going in the mail today and should be at the office by tomorrow for review. We are not in yet, but we are a big step closer!

It is so easy to focus all of our attention and energies on our child or children with special needs and forget about taking care of ourselves and our relationships. Here are some resources for these areas:

Personal

• More Than a Mom: Living a Full And Balanced Life When Your Child Has Special Needs by Heather Fawcett and Amy Baskin
• Parent to Parent USA has programs in many states to provide emotional and informational support by connecting parents with special needs locally. I would encourage you to call if you would like to be connected with another parent or to sign up as a peer supporter if you have a couple of years under your belt as a special needs parent. You can specify how often you will be available and turn down any request if you are unable to fulfill it at that time.
• Many times a local support group is a good place to be refreshed, whether it is through special events, speakers on related topics, or simply the chance to connect with other parents who “get it” for a couple of hours. You may need to search these out, but it is worth checking for a local chapter of a national organization such as the Autism Society of America (ASA).

Marriage

• The divorce rate in families with an autistic child is commonly reported at around 80%. In the US, the National Autism Association has launched the Family First Fund, which is offering qualified grants to be used for local, face-to-face marriage counseling. Applications for the current grant period are due by June 15, 2008.
• Married with Special-Needs Children: A Couples’ Guide to Keeping Connected by Laura E. Marshak and Fran P. Prezant
• Strengthening Relationships: When Our Children Have Special Needs by Nicholas R M Martin

In researching this area, I found many more books dealing with siblings of children with disabilities than these topics, and I will follow up tomorrow with a separate list of those.