In So Many Words

Phew! This week we met with the 2nd grade team, and it went so much better than I even hoped! Thank the Lord!!

Today, I wanted to share a few posts that have really touched me in one way or another over the past couple of weeks. I hope you will find something that speaks to you as well.

Challenging Low Expectations
But What If They Can? is an intriguing essay at Hopeful Parents about the many times we hear that our kids “can’t” do something and how the Common Core State Standards (which were adopted in PA on July 2nd of this year but which I had never heard of before this post) say they can.

Shortly after reading this, I was blown away by a real-life example of how two different therapists could have wildly different views on whether a child with a disability should be expected to learn how to write and how a mom’s Writing Dreams were brought to life through a team member who said she could and should.

The Thinking Person’s Guide to Autism
I have only been reading this blog for a few weeks, and I only wish I had found it earlier. What a wonderful resource! Here’s a couple of recent posts that I just had to bookmark for future reference:

• Getting to Know Your Neighborhood: Reaching Out and Building a Network – This post by Susan Walton is an exhaustive primer on how to assemble a team of support, both personal and professional. It is quite long but worth taking some time to read, and definitely worth holding onto for all the times you talk to “new” parents who could use some direction.
• ‘Autistic’ or ‘Person with Autism’? – One of my favorite bloggers, Jean from Stimeyland, writes about why she uses these phrases almost interchangeably, despite the fact that some would say they are opposing terms. As someone who does this as well, and for mostly similar reasons, I greatly appreciated her insightful post.

Lives Lost to Autism
This one is hard to read and has become somewhat controversial already, but I think it is an important part of autism awareness to also recognize that there are tragedies that involve people with autism which likely would not have happened if they did not have this disorder.

Lives Lost to Autism is a blog that has been started by Ginger Taylor, who explains the reasons behind it on her blog Adventures in Autism. It is a collection of news stories where a life has been lost, either of or by a person with autism. There is no commentary on the site and no comments allowed; it is simply a compilation of news stories where a death has occurred.

Coming Up on Another Piece of the Puzzle
Stay tuned this week, as I have my first blogger interview post coming up. My guest will be Amy Fenton Lee from The Inclusive Church blog, and I think it will be spread over two days since she has a lot of great information and advice to share with us!

P.S. I’d love to hear your reaction to any of these posts or what you’d like me to keep my eyes peeled for! Have a great week.

by Michael McFatridge

I mentioned yesterday how I have been reminded of hope a lot lately.  Here are a few more examples that all seem to tie in together for me.

So, that’s sort of where I’m at with things right now, just being willing to let God restore my hope and to help me let go of my expectations.

Besides catching up on dishes and laundry and dental work and doctor’s appointments and little things like updating Michael’s behavior plan and adding a safe crisis plan to the IEP (more on those topics later), I have had some time over the past month to think about where I want to go with this blog.

I have loved blogging since the moment I started over two years ago, but I have also put a lot of unnecessary stress on myself trying to reconcile my analytical side that wants to write only helpful, informative posts about things like advocacy and therapies and resources with my more stream-of-consciousness side that wants to talk about whatever is on my mind at a given point in time, good or bad.

At one point, I actually did set up a separate blog called Autism Interrupted, where I would go to ramble if I felt too depressed or frustrated to write something coherent and positive for this blog. After thinking it through, I think what I really need to do is separate the two blogs by purpose rather than by how I am feeling. (Yeah, sometimes it takes me a while to figure out the obvious! )

Okay, so all that is to say that I have decided to continue both blogs, but with a much clearer vision for what they will represent. I even wrote a new tagline and short description to clarify my purpose here:

Another Piece of the Puzzle

Awareness, Resources and Hope for Autism Spectrum Disorder

Another Piece of the Puzzle is a blog designed to raise awareness of the challenges facing parents and children dealing with autism and to serve as a resource for anyone affected by the disorder. Through this site, it is my desire to offer information on topics such as IEPs and advocacy, behavioral and sensory strategies and a variety of therapies and treatments related to autism spectrum disorder. Above all, I want to let you know there is hope for a better tomorrow!

While there may be occasions where I cross post and include personal stuff here that relates specifically to autism, in general I am going to post about my own journey at Autism Interrupted. So for more on what’s going on with me personally, feel free to pop on over!

Surprise #1:  Michael requesting a photo shoot with two favorite stuffed animals

As I sit here writing out my thoughts for the first time in several weeks, I am thinking of the many reminders of hope that surround me.

And if you don’t believe that, check out this eight-year old who willingly took his first shower and loved it!

Surprise #2:  Taking his first shower and loving it!

My regular readers may have noticed that I haven’t been blogging much lately. Although I have enjoyed the last two-plus years of blogging and all that it entails more than I can say, I am in a place right now where I must focus on some other areas of my life that are sorely in need of attention.

It really comes down to this issue I have been dealing with of recognizing your limitations and accepting them. That is especially hard for me when blogging is something I love, but I have come to accept that for right now I just cannot continue to make it a priority.

I am going to leave this blog up for the time being and may return to it in the future. If nothing else, I hope that it will serve as a resource for other moms and dads who are looking for information on autism — if you are just stumbling upon my blog now, you can use the nested menu at the top of the page or the category list and search features in the right sidebar to see if I have posted about the topic you are looking for. The Archives menu in particular includes a link to a list of my Autism Resource posts and a list of the posts I did for 5 Minutes for Special Needs.

For anyone who wishes to keep in touch, feel free to connect with me on Facebook or email me at trish1225[at]gmail[dot]com. The comments on this post will be open for a few days and then closed.

And, by the way, just because I’m not blogging doesn’t mean I’m not still decluttering, so if you committed to the challenge, you’re not off the hook! Check out Suzanne’s 365 Days of Decluttering blog if you need some additional inspiration to keep going.

I just thought I would wrap up the week with an assortment of the stuff that is floating around in my brain. It has not been a good decluttering week, although I am getting better at only saving the important school papers instead of throwing everything in the file box. I have spent a lot of time this week on various appointments and meetings, as well as following up with several insurance issues that had come to my attention.

My Sleep Goal

So, I said yesterday that I was making a goal of getting 8 hours of sleep every night. I managed to get 7 last night — I stayed up a bit too late after finding out that my weekend plans were changing and thinking about how I was going to work everything out. But tonight, I should be able to get 8 hours, and maybe even a bit of a nap tomorrow since we aren’t planning to go out due to the snow.

Anti-Depressants

Did anyone else see the article in Newsweek about anti-depressants? They are saying that they have not actually been shown to be effective in treating depression and that it hasn’t really been proven that raising serotonin levels affects mood. I have not heard this before and thought both of those things were accepted truth, so I am interested to find out more about this situation.

The article did say, however, that there has been some positive effect in treating more serious or long-term cases, so I’m not sure where exactly I fall in that continuum. And, of course, you should not stop taking anti-depressants without your doctor’s help because you can experience withdrawal effects (I know from personal experience this can be pretty bad).

Michael’s Progress

Well, it has been a long week, but I have been able to cross a few projects off my list at work – thanks in part to two coworkers who have been able to help with some of it. I also went to Michael’s parent-teacher conference today and was pleasantly surprised to see both the Learning Support teacher and the SLP at the meeting. I was able to let them know that he is due for a re-evaluation this year and will be receiving a Permission to Evaluate form soon.

Michael has been making good progress with his IEP goals, especially now that he has such a good TSS with him, and he seems to be handling the ups and downs of the day much better. There have been a couple of days in the last month that were rough for him, but overall we are seeing improvement. I am hoping we will see some lessening of his anxiety and some other issues once we get his supplements back on track with his current nutritional levels (we are going to a new place in March).

My Cute Story for the Week

Sometimes after I turn out Michael’s light, he still wants another story, and so I try to make one up for him. This is NOT a strong point of mine! The other night when I was struggling to think of what to say, he was trying encourage me and said, “It’s okay, Mommy, it can be anything–fantasy, non-fiction, human interest…”

Well, my ears perked up at that and I turned to him and asked, “What’s human interest?” I couldn’t wait to hear what he was going to say; sometimes I get some very interesting responses when I ask him to define something he just said.

“Touches the heart,” he says to me.

“Where did you learn about that?” I ask nonchalantly.

“Skills group,” he tells me.

He is in a second-grade reading group! I can’t even tell you how old I was before I knew what a human interest story was, and I probably couldn’t have described it in less than two sentences even a couple of days ago. How funny is that!

I have been so encouraged by everyone’s comments on the topic of knowing your limits – both that I’m on the right track and that I’m not alone in the journey.

Barbara from TherExtras brought up a really great point in her comment:

I relate to having learned and accepted my limits for helping people through therapy. People are still surprised, and resistive, when they are told the work must be done by them, the change must happen within themselves or their lifestyle, for themselves or their children.

How true that is – there is no magic pill, even though medication and therapy can help you get to the place where you can make the necessary changes in your attitude and your actions. I have had a few glimpses of what it is like to feel good about your life and the way you are interacting with the world, and it is a little more disheartening each time those feelings start to go away.

So now, instead of letting myself be swept along by emotions and circumstances or berating myself for not handling everything I think I should without a hitch, I’ve decided to apply my analytical, researching nature to dealing with it.

I found a good article at HelpGuide.org called Dealing with Depression: Self-Help and Coping Tips. While at first glance, it contains a somewhat overwhelming number of practical tips and steps you can take to make your way toward recovery, I was encouraged by this advice:

The key to depression recovery is to start with a few small goals and slowly build from there. . . . Take things day by day and reward yourself for each accomplishment. The steps may seem small, but if you make time for them each day, they’ll quickly add up.

So, that’s good, right? I don’t have to tackle it all at once, and I can be proud of each step along the way. But I still didn’t know where to start.

I have “tried” (in quotes because none of these were consciously chosen coping strategies but in reality that’s what they were) getting involved in everything that comes my way to stay busy, hyperfocusing on advocating for Michael until the team was probably tired of hearing from me, organizing and re-organizing my schedule and house, and even going the other way and retreating into reading and watching TV.

Obviously, none of these things have worked.

One of the many links offered at the end of the HelpGuide article led me to A Case of Catch-22 at Psychology Today. This article addresses a key issue in the treatment of depression – that the very “things a person needs to do to get well are the very things the illness makes it difficult for any person to do. Resistance is intrinsic to the condition, making recovery an extraordinary challenge that typically takes a long time.”

I can definitely relate to that, and to much else of what was said in the article. One part that really caught my eye, however, was the advice given by one of the doctors quoted, who gave his recommendation of how to proceed:

[He] recommends that patients prioritize. “Think in terms of a hierarchy moving from the physical to the mental to the interpersonal. Start with sleeping and eating. Then add activity; start with a 10-minute walk. Tackle the cognitive and interpersonal stuff later.”

So, okay. This is what I needed – a plan. A plan that I didn’t have to come up with myself and therefore don’t have to second guess again and again.

Now I just have to follow it. First goal – get eight hours of sleep every night.

UPDATE: I have since found a great site on Understanding Depression at EverydayHealth.com. It has a wide variety of resources on everything from mild or seasonal depression to major depressive disorder. I was so impressed with this site and the quality of the information that I accepted them as a sponsor for this blog.

As I was spending some time online the other day reading about various aspects of depression and anxiety, I took a break to check my GReader and what did I see but Janice at 5 Minutes for Mom talking about her own experience with those issues. It’s amazing how many people struggle with some form of these disorders, myself included.

For those who commented on yesterday’s post about taking Michael to a psychologist, I am going to follow up on it soon, but in the meantime I wanted to talk a bit about a recent therapy session of my own. I have been seeing this particular therapist for several months, but hadn’t been in for a few weeks, mainly due to the busyness of the holidays.

When he asked how things were going, I had plenty of things I could talk to him about that either had already happened or that I was anticipating coming up in the near future. But I have been feeling a bit like a hamster on a wheel and afraid that, if I can’t keep going fast enough, there will be a horrible crash at some point. I really needed more than to talk through one or two specific situations.

So I asked him if he could tell me what I needed to do to get to the point where my moods would not be so driven by circumstances and other people’s words and actions, where I could just be me and have control over myself, even when things may be out of control.

His response was fairly simple — Know your limits, and accept them.

As he put it, some people don’t know what their limits are and so they just keep taking on whatever comes their way without even realizing that it is more than they should expect from themselves. The first step is to become aware of your own limitations in terms of energy, time, resources and ability.

That’s hard enough, but then comes the even trickier part – accepting your limits.

Some people can see their limits but refuse to accept them. So they will keep shouldering more commitments and responsibilities even though they know it will add too much stress to their lives. It’s not enough to know your limits, you have to accept them – even when that means becoming your own advocate with others who want you to perform for them.

That was a surprisingly new concept for me, that I need to advocate for myself just as much as I advocate for Michael.

It really comes down to examining each thing that comes your way and identifying what control you have over it and whose responsibility it is. If it’s someone else’s responsibility, all you can do is pass it on to them and let it go. If it’s your responsibility, you need to decide if it’s within your limits to take care of right now. If that’s not possible, the next step is to figure out when you could do it or get someone else to handle it.

I’m just starting to think through all of this, so I’m probably not repeating it exactly right or in a very eloquent manner, but I can definitely see how it gives me the control that has been so easily given away to other people and circumstances in my life.

What do you think about his answer? Do you know your limits? Have you accepted them?

It’s so interesting to reflect back on a year that has passed.  As I sit on my bed this morning relaxing with a day off instead of going to work, I am thinking about how my job has changed over the last 12 months.

Okay, now I am totally rambling.  I was going somewhere with this thought originally, really, I was, I promise.

**BTW, I’m not sure if anyone tried to comment on my earlier post, or if there really isn’t anybody listening to this anymore.  I enabled inline comments but when I tried later on in the day to leave a comment, I couldn’t get it to work.  So I went back to the regular comments and they seem to be working okay.**

First of all, to break down the title, “healing prayer” in this case refers to inner healing, not physical, and “on the go” refers to in my car on the way to work this morning.

I have been feeling tired. I get so frustrated that I am still dealing with depression, even after years of medication and therapy and prayer. I am just tired of being sad.

Don’t get me wrong, there has been progress made – significant progress. I don’t feel like this ALL the time, and I have more energy than ever before, but it is still a struggle every day.

So I was asking the Lord this morning to tell me what is holding me back and I immediately heard the words “worthlessness” and feeling like I am “not good enough”. The next thing I thought of is how I am always saying “I should…”

I place so many expectations on myself, and many of them aren’t even realistic. I get down on myself for not picking up new skills immediately or for not knowing how to handle a social situation gracefully or for not being enthusiastic about playing with Michael every time he asks. The biggest one is that I tell myself I should be better by now because of how long it has been – ironic, because that’s what keeps me from asking for more help when I most need it.

So, the next step in the process is to ask where this came from, where did it start. The memory that popped into my head was of being a few weeks into first grade and being tested by the school psychologist (or someone like that) before being skipped to second grade. I vividly remember watching her draw a picture of five apples and then her amazement that I could tell her how many there were without looking at the picture. I told her, “But I watched you draw them.”

I still don’t think that is necessarily an impressive thing for a six year old to do, but the memory has always stuck with me.

Anyway, I find it interesting that the memory I saw was of being praised, not of being criticized (because I certainly have those memories as well!). I feel like it’s the combination of being praised when I could do something well and being scolded or simply overlooked when I didn’t rise to the top that I interpreted to mean I needed to do things well and learn them quickly to be worthwhile.

There’s more to the process, but that’s as far as I got this morning, and on the way home from work I was too distracted by the three separate people who pulled out in front of me and starting to wonder if I was perhaps invisible.

This post was written for Steady Mom’s 30-Minute Blog Challenge. I wrote most of it in 15 minutes just before I started work and spent another 10 minutes finishing it just now.