In So Many Words

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.

I shared recently about how I had decided to start taking Michael to see a psychologist and promised an update on how it’s been going.

One of the original things that motivated me to take him was a concern over his levels of anxiety and his self-esteem. Whenever he would get frustrated about something or be sent for a timeout, he was constantly saying things like, “Everybody thinks I’m stupid” and “Nobody likes me,” usually at the top of his voice as he stormed off to his room.

After the psychologist met with me and then talked with Michael for a while, she felt that his feelings of low self-esteem weren’t pervasive and that it was more a function of him just coming out with something drastic when he was extremely frustrated, since he didn’t really know how to handle that much emotion. And, sure enough, within a month of so, he switched from yelling about how horrible he was to how horrible WE were, as is “I hate you” and “You are the worst parent ever!”

(At this point, I am ignoring the yelling as long as he is actually on his way to his room for some alone time – which is sometimes a mom-ordered timeout and sometimes a self-imposed break.)

I took him to meet with psychologist weekly for a while, and then she suggested having him join one of her playgroups, which each have up to 4 or 5 kids all close in age/functioning level. He started going to the Kindergarten-2nd grade group and enjoyed it at first – partly because he had started being aware that he was different from the other kids at school and wanted to meet these other kids I said were out there who “thought like him.”

After a while, though, the group was ready to move into a more free-form time, where the kids would negotiate what games or activities they would do together. Michael and one of the other children were having trouble with this and still needed to focus on the challenges of actually playing together, especially with non-preferred activities. So she split the group into two and continued providing a more structured environment for the one Michael now attends.

Over the past year, he has definitely shown some progress in his ability to control his whining, continue playing a game even when he thinks he might lose (in group and at school, that is, God forbid anyone should beat him in MarioKart Wii!) and allow another child to contribute to his imaginary play. The psychologist is actually talking now about having him go back to the other group once in a while and see how he does with it.

I still occasionally make individual appointments with her to discuss specific concerns I may have and for her to work with him one-on-one. Overall, it has been an extremely rewarding experience!

Note: Since I recently republished the various articles I had written for Root & Sprout here on my blog, I decided to also share a post I had written about a year ago for Adopting the Older Child. I hope to follow this up next week with an update on how it has worked out so far.

I was recently asked by Dr. H to write for Adopting the Older Child about my decision to see a psychologist with regard to my son and am honored by the opportunity to share with you here. Although my son is not adopted, he is a child with special needs, having been diagnosed with autism shortly before his third birthday.

So what brought me to the decision to see a psychologist?

Well, over the last few years (he is almost seven now), I had pretty much given up on typical parenting books and advice because they didn’t seem to work with him. I had read extensively on the topic of autism and worked closely with all of his teachers and therapists to help him progress and to meet his needs, and we had seen some wonderful growth and development in him.

But I was starting to feel stuck. Sometimes things were great, and other times I couldn’t give the simplest direction without hearing lots of whining and arguments, often leading to total meltdowns. My son would also range from sobbing inconsolably to storming off to his room yelling that he was stupid and that nobody loved him.

I tried so many different ways of responding to him in an effort to figure out what would work, but that only seemed to create more confusion. I was also getting more and more worried about his high level of anxiety and his seemingly low self esteem. While I didn’t want to cause emotional damage, I also knew I had to get control of the situation before I had my own meltdown.

I had thought of seeking the help of a psychologist almost a year earlier but hadn’t followed up on it at the time. Now I was desperate ready, so I made an appointment with one of the people that had been recommended to me as an expert in the area of autism. She met with me alone first to discuss what I was seeing and feeling about my son and our situation, and then she started meeting with him once every week or two.

We were very lucky to find someone I really liked from the beginning, although I was willing to meet with more than one if she didn’t connect well with us. After a few months of going to her, I can say that this has been one of the best decisions I have made. My son is benefiting from having someone who can help him learn more about himself and how he relates to other people.

It has also been wonderful to have someone in our corner with more knowledge in this area to help me figure out what is going on and also suggest the best ways to handle it. She has given me several practical suggestions, including things like teaching expected behavior and finding a discipline technique that works for us.

Monday night, Michael had his first group therapy session with the psychologist. We arrived a few minutes late, but luckily the three other boys were still in the waiting room playing with Legos.

Michael was very excited to be meeting other boys who, in his words, “think like me and are my same age too.” Makes me wonder why we all push so hard for inclusion with typical peers all the time.

Now, I’m not saying anything against inclusion—we all live in this world and need to work together and help each other—I’m just saying it doesn’t seem like a bad thing to seek opportunities to be with people who are similar to you. After all, isn’t that what we all do? We visit different churches to find the one that fits our style; we try to find common ground with people we meet to see if they have the same views or background or even hobbies.

Ideally, he can begin to have these opportunities not just as part of a therapy session, but as part of his everyday life. That reminds me, I need to email the mom of the boy he met at the last ASA meeting to arrange a playdate.

As an update to my frustration with the increasing meltdowns, the psychologist suggested that I may actually need to keep a tighter rein on the schedule and freedoms at home and to make sure I am giving clear and immediate feedback on both good and bad behavior. I have been somewhat relaxed at home, thinking this will allow him to focus more when he is at school, but it appears to be backfiring on me.

Okay, I was looking around for a picture or cartoon that said “Gotcha!” but then I found this adorable picture titled, So you’re thinking of getting a pet duck? by tifotter. (Seriously, though, she does not recommend it; you can read her funny but true list of reasons why not to get a duck as a pet at Mr Flapper Duck.)

Okay, now back to my post.

No, we are not adopting an older child or getting a pet, at least not at the moment. Getting a Pet is the topic of today’s Try This Tuesday post over at 5MFSN, and, although we are talking about it, we are far from making a decision at this point.

And Adopting the Older Child is the name of a blog where I was recently asked to write about my decision to start taking Michael to a psychologist. The blog’s author often encourages her readers to seek the help of a therapist for both counseling and the practical advice they can provide during the adoption process and once the child is in their new home and family.

Even though we are not in an adoption situation, she thought our experience might be helpful to her readers, so she sent me an email and the rest is history. You can read my post here: Deciding to See a Psychologist. While you’re there, check out some of the great resources on this blog, such as:

• Adoption Experts: Who Is and Who Isn’t
• RAD vs. Attachment Difficulties
• Questions to Ask Once You’ve Identified a Child

For today’s Try This Tuesday, I’m talking about expected behaviors and perspective-taking. Not too deep for this early in the morning, I hope! This is something that has come out of Michael’s sessions with the psychologist I recently started taking him to. I’m so thrilled to have found her and want to share more of what I am learning and how Michael is doing here, but in the meantime please pop over and read more about it.

So I was catching up with my Google Reader today (since I hadn’t even turned on my computer since Friday and was feeling serious withdrawal pains) and saw that 5 Minutes for Mom had yet another giveaway, this one for a $50.00 gift certificate to Tiny Prints. Just as I was thinking about how many giveaways they have had lately, my eyes landed on another post, this one announcing their newest site, 5 Minutes for Giveaways. And their first item up for grabs is a Kodak Digital Picture Frame!

I know things have been pretty light around here lately. Between us taking turns being sick and decorating/shopping/etc for the holidays, I haven’t had much time to sit and process all the things that have been going on inside of me. My company is also considering layoffs for the first time in its history, and my husband’s job has become quite stressful due to a variety of circumstances, so daily life is definitely taking up more than its fair share of my time!!

But things are good, and even if they aren’t at times, God is good and He will provide. (Okay, rambling over, you may now return to your regularly scheduled programming!)

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!

I am feeling completely overwhelmed, especially at this time of year as so many programming decisions need to be made. We are still working on the transition to kindergarten, but for the moment my focus has shifted to behavioral health as we approach the start date to apply for a Summer Therapeutic Activities Program. This is our first year to participate in STAP, as it is more commonly known, and I hear it will be a mad dash once April 24th rolls around. Yikes, that’s next Thursday, and I am still not 100% sure the psychologist is on track for getting the addendum to his psych eval done as soon as possible.

I have spent the last two days talking to the STAP providers in our county, of which there are 8. Two are not specifically targeted towards autism, although one of those would take a child who is high-functioning. One of the ASD programs is for age 14-21, so that is out, and another hasn’t returned my call. So now I need to rank the 4 remaining programs, and that is one of the many reasons I am feeling overwhelmed right now.

Do I pick the one that is integrated with typical children but is mostly outdoors with swimming everyday and some team sports (both new to my child and likely very challenging)? It has a 4:1 ratio (4 campers to 1 staff) and has lots of field trips so requires a fairly high level of socialization and self-regulation, not easy to come by when you are faced with so many new experiences all at once. My gut instinct on this one is maybe next year, but I will say that the program director is very open and willing to work with each child on a case by case basis.

Two of the others are a 2:1 ratio and have once a week field trips with some incoming events as well (fire truck, etc) and incorporate some sort of curriculum involving individual learning in addition to social groups and arts/crafts (primarily used for following directions and fine motor skills, not for artistic ability). One of these is 2 doors from where I work, although that is not a big deal as transportation would be provided to and from home if he needs it. Both of these contacts were helpful but less enthusiastic in general; both are mailing me a brochure. They sound fine, but my instincts are this is too restricted an environment giving our intentions of a regular classroom for the fall.

The one that has really caught my attention has a 3:1 ratio, which might be a nice middle ground, and follows more of a preschool style curriculum in the morning, with circle time, different activities of 10-20 minutes each depending on the kids’ attention spans, includes sensory stimulation, arts/crafts and games with free play interspersed. After lunch, they usually go outside to local parks/playground (their office is in downtown Harrisburg right on the river so not sure exactly where they would be going for that).

This last one also has an afternoon program that he could go into when STAP is over, although the timing would be a bit tricky given our school district’s kindergarten schedule, and we may just decide to have him go to a half-day daycare instead. What is nice is that we can visit this program to get a feel for how they run things in general.

So, what I really have to do tomorrow is firm things up with the psychologist. If she is not able to be timely, I may have to have a whole new evaluation done at one of the other agencies, but then that opens another can of worms about the fall, which I can’t even think about right now. If the paperwork doesn’t get in quickly enough, which program is best will really be a moot point.

Thanks for letting me ramble – prayers and advice are welcome (and I promise to post another autism resource list tomorrow; I know I am behind on those). At least we don’t have anything other than church planned for this weekend, so we can all have a little time to decompress.

Last month, the Little Guy had a psychological evaluation for the purpose of having his behavioral health services reauthorized for another year. Even after filling out the paperwork to have his info released to me, they only sent me a summary, not the full evaluation. So I didn’t have any of the discussion sections, just the presenting info, diagnosis and recommendations. I was quite surprised to see a second diagnosis listed (his primary is autistic disorder, of course) – Disruptive Behavior Disorder NOS.

This was quite alarming to me, so I began looking up information on this diagnosis. I learned that there are three major disorders under this category – ADHD, Oppositional Defiant Disorder and Conduct Disorder. The NOS (Not Otherwise Specified) distinction would mean that a person had significant impairments but didn’t fully meet the criteria for any of those. The diagnosis is generally given to someone whose main issues are behavior-related; and the best treatment is considered to be parent skills training, presumably because the parents need to learn how to handle a child with one of these disorders to help them succeed as much as possible.

Now I had always heard that most psychologists do not give a diagnosis like this to a person with a Pervasive Developmental Disorder (of which autism is one) because issues with attention and behavior are presumed to exist and to stem from the neurological deficits of PDD. Without the full evaluation, I was at a loss to understand why this label would be appropriate for LG.

I went to the psychologist’s office yesterday to pick up my copy of the full evaluation and to meet with her. I had a list of questions to ask and was basically going to treat this as a fact-finding mission and try not to get too emotional. Well, before I could even start in on my list, she asked if I was concerned about the diagnosis and went on to say that it wasn’t supposed to be on his evaluation. She said that she didn’t have anything in the discussion sections about it and that her supervisor, who reviews all her evals, did not put it in. She believes it was a cut and paste error from using a template when typing up the eval, and they are submitting the change to the insurance company.

So in less than five minutes, I was back out the door, completely amazed by the outcome of the meeting. I don’t know if my request for a meeting is what prompted her review of the eval or if the problem had already been noticed, but I am so relieved and thankful that we don’t have to worry about another label being put onto Little Guy. We have enough to work on as it is!!

P.S. While looking for the diagnostic criteria in a friend’s copy of the DSM-IV, I found a section on caffeine-induced disorders (there are four)! They are sandwiched between amphetamines and cannabis. There was no specific mention made of Mountain Dew, however, so maybe I have Caffeine-Related Disorder NOS!!