In So Many Words

I haven’t written much about our daily lives lately – there has actually been so much going on that it’s been hard to distill it into a coherent blog post. The other day I woke up early and was thinking about where Michael is with things right now and what I want to focus on in the immediate future.

So, please take this as a reflection of my thoughts about our personal situation at the moment and not an editorial on how anyone else should think or act with regard to their own child.

Third grade so far has been a highly positive experience for all of us. Michael’s teacher is extremely good, and the whole team seems to be working together quite well towards the goal of encouraging Michael towards more independence in his organizational skills as well as self-regulation.

Of course, there is always the tendency to move too fast towards lowering the level of reinforcement and support. When people see success, they seem to want to breathe a sigh of relief and say, “Okay, that’s taken care of.” But I see it as a much more gradual process. I think the first sigh of relief should be that we have found a level of support that is appropriate for him right now and that we should continue at that level until he is clearly showing that he doesn’t need it so much.

When anyone on Michael’s team mentions pulling back in any way, I tend to panic and react negatively to the suggestion, not because I don’t have the same desires as they do for his independence, but because I instinctively sense that he needs an extremely gradual transition towards a different kind of support than he is currently getting.

(Ironically, the day after I wrote this the Learning Support Teacher was talking about lengthening the interval at which Michael earns checkmarks toward his rewards. For now, we are just going from 3 minutes to 5 minutes, so that should be a negligible change for him.)

Notice that I say “different kind of support.” He will still need support from other people – we all need that in our lives.

One reason for this is because of his maturity level, especially in terms of emotional and social functioning. Another is that he is not at the point where he can always identify when he needs additional help or ask for it if he does realize it. That skill is one of the most important ones I can think of for him to learn, actually.

As I am writing this, I am thinking that another thing I need to emphasize more with him is that everyone needs help and support from other people, to varying degrees based on what is happening in their lives. Pointing out to Michael when others are asking for help or making mistakes or struggling to learn a new skill helps him see that everyone has difficulties at times and that it is actually a sign of maturity to know when to ask for help.

I think a lot of his “self-regulation” issues come down to this perception that he should be able to do everything right and win all the time and understand everything immediately, and that when things don’t go the way he expected, he has trouble identifying what is happening and then either communicating it to someone or figuring out what to do about it.

So (and pardon me as I use my writing to think through the issue), perhaps my focus should be more on helping him to notice and understand what is going on around him so that he can engage in more communication and interactions that are meaningful for him.

This may sound sort of touchy-feely, so let me say that I definitely think it is critical to provide clear instruction on “expected behaviors” and related topics, and that using tangible reinforcements for motivation on non-preferred tasks meets his needs at the moment. And these strategies are incredibly useful to get through the school day, and for structured events in the home and community.

Sometimes I wonder if I am being hypocritical by advocating for such a high level of support at school, while tending towards a more natural interaction at home. But ultimately I don’t think I am, for several reasons:
1. School is by its very nature a more structured environment, with many people who all need to work together in a safe and responsible manner to accomplish specific goals.
2. There is less time and opportunity to provide the in-depth explanations and time to process situations within the constraints of the school day.
3. A teacher with a class full of students cannot possibly attend to all of the signals that Michael may not be paying full attention or understanding the dynamics of what is going on or even that something is upsetting to him. (His current teacher is by far the best at this that I have seen, but it’s a completely different situation than him being with just me or with a therapist one-on-one.)

Recognizing these things has helped me gain a better perspective for myself on what I advocate for school supports. At home, I may not need to provide such a high level of reinforcement*, simply because I am able to focus more intently on his needs at that moment, whether it be adjusting the environment or having an in-depth conversation about perception versus reality.

At school or in a more structured community setting, he needs the higher level of reinforcement to motivate him to accept what is happening around him or what he is being asked to do as necessary, even if he doesn’t like or understand it completely. And learning that different situations and environments have different rules and expectations is a good thing too.

Edited to add: *Re-reading this, I think I should say I don’t need to provide as much tangible reinforcement such as physical rewards or a token economy, but can rely more on social and emotional reinforcers.

A few months ago, I was approached about helping to beta test a new site for caregivers of loved ones with issues such as Alzheimer’s, autism, and more. The site offers a way to connect with other caregivers through online journals and book clubs, and it provides lots of resources related to caregiving as well as to self-care.

Sounds pretty good so far, but what really made this site so interesting to me is that the site is built around an online game where you learn about caregiving while also solving a mystery and having the option to solve various puzzles along the way! I have been through the first two episodes of the game, which primarily discuss caring for an elderly relative with Alzheimer’s or a similar illness, and it really opened my eyes to what my father-in-law and sister-in-law have been experiencing in providing the day-to-day care for my mother-in-law, who has Alzheimer’s.

Of course, I blog mostly about autism and many of my readers are more interested in that topic. There are at least two book clubs specifically focused on autism and a fair amount of resources such as recommended books and tip sheets on various issues. A quick search of the term autism on the site turns up a number of related journal entries and book club discussions.

So, if you or someone you know could use a little break from the stress of the day, or would benefit from connecting with someone else in a similar situation, I would encourage you to check out this site. Right now, they are offering a free one year membership and will also contribute $1 to the Autism Society for anyone who joins using this link.

If you want to stop reading and go check it out, feel free! And if you’d like a bit more information about the site first, I am happy to oblige…

New Resource for Family Caregivers

Despite millions of dollars and hundreds of dedicated websites, family caregivers are still in trouble.

Over 60 million family caregivers in the U.S. alone are sick (with nearly twice the rate of chronic illnesses as their non-caregiving peers); they’re depressed (40-60% report significant feelings of depression) and they’re frustrated, unable to find resources or solutions they need to help with the basic, day-to-day caregiving tasks they face. They’re also costly to our economy, accounting for an estimated $29 billion in lost productivity to our country’s businesses.

It’s time to change this description of the family caregiver. It’s time to do just one thing: Improve the lives of family caregivers. Caregiver Village, a brand new place on the web, is dedicated to doing exactly this.

• Caregiver Village is dedicated to building better health, using an innovative, engaging virtual game to inspire better self-care, teach stress management skills, and build more positive attitudes about caregiving.
• Caregiver Village is dedicated to increasing happiness, by helping caregivers connect more with others, choosing their caregiving journey and encouraging mindful support of each other.
• Caregiver Village is dedicated to easing frustration, by linking to resources caregivers need to make a tangible difference in their lives.
• To achieve such an epic change it will take a true Village – a Caregiver Village – reaching out, inviting friends, family and acquaintances to join with us as we raise our voices, affirm our choices and change the world of caregiving today.

Join in. Make a Difference.

You can be a part of this transformation. All it takes is a few simple steps:

JOIN – Become part of Caregiver Village and join a community of supportive, positive, life-changing individuals.

SOLVE THE MYSTERY – Put the “fun” into what is perceived as a terrible drudgery by others. Play the Village Chronicles virtual game, and have a little fun while learning valuable self-care techniques.

SHARE YOUR STORY – Creating and sharing a journal can be an incredibly helpful experience. No writing expertise required. Everyone’s welcome.

GET CONNECTED – Join one of the many book clubs within Caregiver Village. You’ll find a group of people ready to help, support, educate and amuse you. They’re waiting just inside.

FIND RESOURCES – Caregiver Village has a selection of resources selected just for busy family caregivers. Find resources that can make daily caregiving tasks much more manageable. You’ll find links to important organizations as well as exclusive Tip Sheets and Online Training courses designed just for you.

Join me today in reaching out and improving your life – my life – and the lives of other family caregivers all over the country.

LIMITED TIME OFFER:
Join NOW and receive a year’s membership free – $50 value! In addition, when you join using this link, Caregiver Village will donate $1 to the Autism Society.

This month’s topic is on helping special needs kids to calm down and/or refocus after a meltdown or stressful event and asks, “What works for your child?”

For this question, I thought I would go straight to the source. I interviewed Michael until he said it was too boring to talk about anymore and got a few ideas of what he finds the most helpful. So here goes:

• A hug or a squeeze – “nice and tight” is best.
• Snuggling on the couch or his bed. (I sometimes turn his music on as well, but he said that is for bedtime, not for calming down.)
• Tickling or doing something funny to make him laugh. He said this makes him happy, which helps him calm down.
• Having Mommy explain what is going on so he won’t be confused. (Many times his meltdowns are triggered by misunderstandings or not stopping to realize that something can easily be fixed.)

He also said the first step is to stop him when he is whining. And he’s right, it’s so much easier to head off a meltdown than to actually recover from one.

Note: This post was written for the S-O-S Best of the Best, Edition 10: Calming Techniques for Stress and the Special Needs Child, which will be published on September 15th.

I apologize for the short post this month. We got a ton of rain after the hurricane went through and ended up with almost two feet of water in our basement. We have spent several days sorting and tossing stuff, as well as doing a major cleaning.

Blog awards are so much fun! And this one is so pretty, too; I love it!

Here are the rules that came along with it:

1. Thank the person who gave you the award and link back to them in your post.
2. Share 7 things about yourself.
3. Pass this award along to 15 recently discovered blogs (contact them to let them know).

So, here’s a big thank you to Melissa at Someday, When I’m Famous… for thinking of me. Melissa is a great blogger and also an author, so check her out at her blog or on Goodreads.

And a few things about me (hopefully interesting ones!)

1. I haven’t eaten potatoes in over a year, since I was found to be allergic to them, and I occasionally dream about ordering a big plate and scarfing them down before remembering that I’m not supposed to.
2. I have become addicted to Netflix and have worked my way through several TV series, even though I’m sure the time could have been used much more productively.
3. I haven’t been to church hardly at all this summer because we have run out of volunteers for Michael and I don’t enjoy children’s church any more now than I did when I was a kid myself.
4. I am grateful that my friend Kelli has started a blog about reading through the Bible chronologically, because it gives me a bit of spiritual connection that I have been missing. (It’s called The Exhorter Reads if you want to check it out – we just started reading on September 1st, so you haven’t missed too much!)
5. I haven’t used any of my stamping supplies in ages and have even bought the last several birthday cards I needed at the store (gasp!). My friend and I got together yesterday to talk about getting back to it on a more regular basis again, which should be a lot of fun.
6. I have found that even a good school meeting leaves me drained and stressed, although at least without the residual anger and frustration that comes from a bad one.
7. I am looking forward to cooler weather – especially since I am so tired of having allergy and sinus problems.

Now, onto some (relatively) recent blog finds. This is a bit of a mix, although all of these bloggers have some connection to autism. Some I read for enjoyment and comraderie, while others make me think and even challenge some of my previously-held ideas – and some do both!

• A life less ordinary?
• A Mommy Story
• A Quiet Week in the House
• Autism & Oughtisms
• Autism From the Lighter Side
• Countering…
• Delightfully Different Life
• Embracing Chaos
• From Inside the Heart
• Life in the House That Asperger Built
• Mind Retrofit
• Navigating Cruz
• stark. raving. mad. mommey
• The Tumultuous Truth
• Wonderfully Wired

A note to those of you I have passed this award on to – you are under absolutely no obligation to follow any of the rules that come with the award or even to acknowledge it in any way. You can choose to participate in any way you wish or to ignore it completely. I have listed your blog simply because it has given something to me over the last few months and I wanted to let you know.

The school year is off to a pretty good start so far, although of course we are only two days in, I know!

Michael’s case manager met him at the door on Monday to walk him up to class and make sure he got started okay. His TSS showed up about the same time we did as well, so he was pretty happy heading in, as you can see in the photo.

The first couple of days seemed to go well with regard to his classroom teacher. There were a couple of outbursts, one at recess on Monday and the other in art class today. Both were in reaction to someone saying one thing and then changing the plan – so not too surprising.

For me, the nicest part is having a good working team. Several of us met this afternoon to touch base, and we were able to go over a number of questions and concerns pretty efficiently and all still leave in a good mood.

The third grade teacher has greatly impressed me already as being extremely proactive and flexible in her approach to meeting Michael’s needs within the classroom. Best of all, she seems quite willing to discuss things and balance her expertise with the opinions and information from me and the other people on the team.

The autism specialist is going to be doing a sensitivity training for the third grade students in September, and I think that will be a big help going into this important year. She has a video she likes to use, so we are going to let Michael watch it at home and decide if he wants to be in the room when the class views it and has their discussion.

Oh, and another great thing is that he has the same phys ed teacher as he had in first grade, instead of the one from last year. The teacher during second grade just didn’t seem to exactly “get it,” if you know what I mean, so I am definitely happy about this news.

While we have had some rough times in the past and will certainly have them at some point in the future, I am just so thankful that we are getting off to a good start this year!

“Back to School” are words that often strike terror (or at least high levels of anxiety) into my life. We have had so many ups and downs with school, especially at the beginning of the year, that I dread re-entering the limbo period of school hours where I work and run errands and such not knowing whether the end of the day will find me in heaven or in hell.

And yet, every year I somehow find a bit of hope – hope that this teacher will get him and be patient with his needs while also seeing the ways in which he could excel.

We went for a classroom visit on Friday and was pleased to find that his desk was ready, almost all of the visual supports were in place, and the teacher was familiar with the IEP. Such a relief, especially compared to some previous years. By all accounts, she runs a highly-structured class without yelling at the kids (as some others have been reported to do).

I was also impressed that Michael’s break spot is actually the same spot that she has used for years with the entire class. Any student can request a break, and she has even used break cards for students who seemed to need the visual/physical cue for it.

All that remains is to get him there on Monday morning and hand him over once again.

I have to admit that I have been starting to get really stressed out about school starting up again. Between Michael’s own anxiety and my worries about how things will work out with a new teacher and a new set of expectations, my mind has been whirling.

I recently agreed to start participating in some blog tours and reviews through Kathy Carlton Willis Communications and received an email with this encouraging and timely article about praying for our kids as they go back to school. It was so encouraging, and I am glad to be able to share it with you here.

Back to School … Pray!

Love the Lord your God with all your heart, with all your soul, and with all your strength. You shall teach them diligently to your children, and shall talk of them when you sit in your house, when you walk by the way, when you lie down, and when you rise up.
Deuteronomy 6:5,7

Excitement’s in the air! Anticipation rises. It’s that time of year when the kids go back to school.

Who can forget watching your child go to “big school” for the first time? I remember those bittersweet moments as each of my four children kissed me good-bye. I always knew that day would arrive, but nothing prepared me for the moment.

Elementary school seemed to fly by and almost overnight they were in junior high and then high school. And in a blink of an eye, they were off to college. Where did the years go?

I learned early on that when my children were away from home, praying for them comforted me. By turning them over to God I experienced a calm peace. Year after year my prayers intensified, yet remained the same…

• Elementary School – Will he make a friend? Will he eat all his lunch, or just the cookies and chips? God, help him to love You with all his heart.
• Junior/Senior High –Will he make the right friends? Is he paying attention to the teacher? God, help him love You with all his soul.
• College – Will he make some forever friends? Is he making the right life decisions? God, help him to love You with all his strength.

Just as our children face challenges, we as moms face our own set of challenges…

• To pray over our children no matter where they are in life.
• To be on our knees for those God entrusted to us.
• To ultimately pray for each child to love Jesus with all his heart, soul, and mind!
• Finally, to let them know we are praying for them each day! What a blessing it is to pray for our children.

I ask you to take advantage of this new season too. Do you need a fresh start? Where are you in your relationship with God? In my Bible study, Reflecting Him – Living for Jesus and Loving It, I encourage you to find Jesus in your everyday activities. He is there for us 24 hours a day, and He wants to hear our everyday prayers!

Author Bio

CARLA MCDOUGAL is founder of Reflective Life Ministries headquartered in the Houston, Texas area. Her true passion for her Lord and Savior, Jesus Christ, shines brightly, whether she is speaking or writing. She shares experiences from her own life to encourage women to live every day for Him. God is sending Carla around the world to speak to women from all walks of life—those living in the best of circumstances to those who have hit rock bottom.

Carla’s book, Reflecting Him: Living for Jesus and Loving It, is a 10-week study that encourages you to open your eyes to God’s daily life lessons. The more you ask God to be in your life, the more you will recognize His hand on everything you do. For more information on a growing number of products from Reflective Life Ministries, and to see about booking Carla for an event or interview, go to www.reflectivelifeministries.org.

I don’t know about you, but I spent the first several days after hearing the diagnosis of autism frantically reading everything I could get my hands on, trying to figure out what I should be doing to help my son. I swung daily from feeling that there must be one perfect answer to the question to feeling like I should be hitting every area at once so as not to lose any more precious time.

I was blown away by the fact that the Birth-3 team thought 45 minutes of speech therapy and 45 minutes of occupational therapy a week was plenty. And even though the preschool program offered 12 hours a week in the classroom along with the therapy sessions, I still felt an intense pressure to do more.

So we did. We have tried a lot of different therapies, with a variety of outcomes. We have done music therapy, art therapy, occupational therapy, a listening program, speech therapy, sensory integration therapy, behavioral therapy, Floortime, psychotherapy, a special diet, supplements, and medication, to name a few. Some were effective and have stuck with us, while others likely did more to make me feel like I was doing something than they actually helped Michael.

I don’t pretend to have all (or even most) of the answers, especially since at times I still battle the same insecurities and fears that I always have, but here’s a few things I have learned along the way:

• Parenting is a marathon, not a sprint. Pace yourself, and don’t let every little issue become your whole life. The conversations about nursing versus bottle feeding that were so all-consuming when your child was an infant aren’t even on the radar when you are talking to the second grade teacher about spelling or math.
• Quantity is important, but quality is even more so. As much as some people would like you to believe you must do 40 hours of ABA a week, or 8 Floortime sessions a day, it is critical to give your child yourself, present with them, engaging with them however you can.
• Along those lines, nothing takes the place of getting on the floor and playing with your kid. For some people, this is natural, but for me it was easy to retreat to the computer and my books and focus on researching and learning to find the “right” answers. If I could go back, I would spend half that time just hanging out with Michael instead and really paying attention to what makes him light up with interest and curiosity.
• You have to pick your battles; that is, figure out what your top goals are and prioritize any therapies that addresses those issues. What skill or activity would make things better for your child and for your family? What would make them more functional and independent in their communication or daily life? Once you know what you want and what your child wants, you can make decisions about where therapy may fit in with those goals.

When it comes down to it, we are all imperfect people, raising imperfect children. We want to prepare them for life as best we can, to pass on our values and ideals, to let them know they are loved and to celebrate their uniqueness. We cry for them when things are difficult and rejoice with them when victories are won. We do the best we can at any given moment, and so do our kids, and that’s enough for me.

Note: This post was written for the Best of the Best, Edition 9: Therapy and Special Needs Kids.

So, Michael and I have made it to State College, and I am eagerly awaiting the start of the National Autism Conference tomorrow morning.

We were supposed to drive an hour the other direction for a family reunion before coming up here, but Michael was so upset about getting here late at night and then having to go to the conference first thing Monday morning that I decided to bring him up early enough to play with his cousins today. They have been happily ensconced on the Wii for the last hour, although from what I can hear at the moment, he is not too happy about losing a MarioKart race to his cousin Jake.

I am so thankful for the hospitality of my brother- and sister-in-law, who happen to live less than 10 minutes from the conference center, and that the fee for a PA family member is only $25 for the week. Quite a bargain for the amount of information provided, even when you take into account missing a week of work!

The conference kicks off with a session on Autism, Politics, and Law by Lorri Unumb. She is a lawyer and parent of a child with autism who has been heavily involved in advocating for healthcare coverage for autism therapy. I am also attending a parent advocacy session with her later that day, so I am hoping that she provides some useful information for me.

I am especially looking forward to a couple of sessions later in the week – one on Motor Planning and another on Adapted Physical Education. These are areas that I haven’t heard much about and could definitely use some guidance in.

At previous conferences, I have tended to focus my time more on communication, social skills, sensory issues, and educational strategies, but this year I am going in a bit of a different direction. In addition to the parent advocacy session on Monday, I am also going to a legal issues session on Wednesday and a Thursday session on evaluating autism treatments and distinguishing science from pseudoscience.

I am hoping to have lots of great stuff to report here as well as to help me in moving forward as an advocate for my son as well as for other families I encounter along the way.

I’ve been posting mostly about books lately, but I thought it would be good to write an update on how things are going with Michael so far this summer.

Michael with his Lego Creation

During his two weeks at the babysitter’s he only had 2 or 3 outbursts, and only one of those included aggression. And he has only had 3 aggressive incidents during the first four weeks of his summer program. This is a huge improvement over how school was going and is even better than he did last year at the same sitter and program.

As the summer progresses, I have seen a bit more whining and emotional outbursts, and he seems to be nervous about going back to school in a few weeks, but at least we are able to have conversations about it and talk about ways that he could handle how he is feeling. I was just sent a book to review from Future Horizons called Exploring Feelings: Cognitive Behavior Therapy to Manage Anxiety. It is by Dr. Tony Attwood and includes a workbook section that I am planning to do with Michael.

His summer program goes for one more week, and then he and I are going to the autism conference in State College the first week of August. It will be great for Michael to participate in their children’s institute, and then he will have two more weeks at the babysitter’s. Bob got off work the week before school starts, so we will have a short family trip and then they will go down to help with Bob’s mom for a couple of days, and somewhere in there we will schedule a visit to the school to meet the teacher and see his classroom for third grade.

I’m not sure what happened to all of my goals for the summer – we are only a third of the way through the summer packet and haven’t made any progress on keyboarding skills or even on tying his shoes. I’m not complaining, though, a relatively peaceful summer is a wonderful thing and I am truly thankful for it.