If That Were My Child...

Have you ever seen a child acting up in a public place, and thought to yourself, “that child just needs more discipline”, or “If that were my child…”?  I suspect most people, at one time or another, have done exactly that.  I know I did, before I had my own children.

I remember years ago, when our three oldest were little, a friend sat down with us and told us we should be more “hard-nosed” with our children.  This friend was trying to be helpful, but had a very different parenting style from us.  He felt that if we were just more strict with our children, that their problems would somehow magically disappear.  He was also concerned that they would grow up to be overly dependent on us, and unable to function on their own.

Now keep in mind that of these three children, only one, S., had any problems with “acting up”.  She was  two years old and had just been diagnosed with Pervasive Development Disorder-NOS.  PDD-NOS is a form of autism, and basically means the child has many of the symptoms, but not in a combination that fits neatly into any of the “normal” categories for Autism.  S., at that young age, had no concept of boundaries or even of the world around her.  At that time, she had a fixation on Frosty the Snowman.  She had a stuffed Frosty that sang when you squeezed his hand, a Frosty pillow, and a video.  She would watch the video constantly, over and over and over.  If she saw a paper snowflake, she would shout out “Frosty!!” and run to it.  S. had no interest in anything, or anyone, else.  Other than saying “Frosty”, she had virtually no verbal communication.  I remember one time, in church, she walked up to the front, lay down on the floor in front of the podium, and started scooting herself around in a circle.  She had absolutely no clue that her behavior was not socially acceptable.  She just knew she wanted to spin around.  Thankfully, the congregation was very small, and most everyone was aware of our situation, so they just smiled and continued with the meeting.

If we tried to “force” S. into “normal” behavior, she would either shut down completely, or lash out and bite, pinch, or hit whoever was closest.  Obviously neither behavior was acceptable, but neither were they conscious attempts at manipulation or defiance.  S. simply wasn’t capable of communicating her needs in any other way.  So we decided to “choose our battles” and focused on giving S. the tools she needed to communicate appropriately.  S. couldn’t understand the concept of transference, where one principle can be applied to multiple situations.  She couldn’t understand a concept as broad as “It's not ok to pinch someone because you didn’t get what you want”.  Rather, she had to be taught the same principle for every single possible situation.  In other words, she had to be taught that it was not ok to pinch someone because she didn't get to play with that doll right then.  And then an hour later, have to be taught that it wasn’t ok to pinch someone because she didn’t get to watch her TV show.

Despite all of this, S. appeared, to the casual observer, to be a perfectly healthy child.  Many times, we were on the receiving end of glares and rude comments because of her behavior.  We had to constantly remind ourselves that those people had no idea what was going on, and that we were doing the right thing for our daughter.  But it still hurt.  So the next time you see a child acting up and start to blame the parents, remember that you don’t know the whole story.  Sure, that child may just be misbehaving, but you have no way of knowing that.  Instead, offer a smile or a helping hand, and assume the best.

Really Cool App for Tracking Pain Symptoms

Chris Bennett of Ankylosing.org Wins Twilio's "Anything Goes" Contest for AS Journal - Twilio Cloud Communications - Discover Our Web Services API for Making & Receiving Phone Calls & Text Messages, Cloud Telephony

This is a really cool app for tracking and monitoring pain symptoms. It is designed for AS (Ankylosing Spondylitis) patients, but would work for anyone with chronic pain. It is free to use (other than standard text fees).

No Judgment, Just Love

First, a little back story:  I am not an animal person, never have been.  I don’t hate animals, I just don’t think of them as equal to people.  Until last month, I had never let an animal lick me on the face, and I’d never kissed an animal.  That said…

My 17-year-old daughter E. has Rheumatoid Arthritis.  She is a member of an online support group for women with RA.  Many of these women have therapy animals, and have found them to be a great benefit in dealing with both emotional and physical pain.  Because of this, E. decided she wanted to get a small dog for herself.  We did some research, spoke with her doctor and the caretaker at the local shelter, and decided to do it.  The shelter didn’t have any suitable animals at the time, so we asked the caretaker to please let us know if any came in.  The next day, he called, and we went to see what he had.  He had two adorable little puppies available, just 8 weeks old.  Their mama is a Jack Russell/Rat Terrier, and their papa is a Chihuahua.  We each held a puppy, and the most amazing thing happened.

I kissed my puppy!  And then it licked my face, and I didn’t freak out!!  E. was holding one puppy, and I was holding the other.  Our intent was to decide which of the two puppies we would take home for her as her therapy dog.  But I just couldn’t put my puppy down!  I couldn’t let go of her.  Inexplicably, I was in love with this dog!  Long story short, we now have two adorable puppies.  E. has Brownie, and I have Baby.  

Brownie is the brown and white, and Baby is the black and white.  They are already doing wonders for both of us.  When I hold Baby, my anxiety level drops to practically nothing, and when she runs and jumps into my lap I just feel joy.  She loves to have her tummy rubbed, and she’ll lay on her back in my arms, just like a baby, while I rub her tummy.  Then she snuggles with me for a while, then runs off to play with her sister.

Brownie has also been a great help for E.  Before we got the dogs, E. spent all her time on the computer in her room, and had panic attacks at the mere thought of sleeping somewhere other than her bed.  Going camping as a family? Not gonna happen.  But now, while she still is not thrilled with the idea, she no longer has panic attacks over it.  She also spends time playing with both dogs, taking them for walks, feeding them, etc.  She is coming out of her shell a bit, and it’s wonderful to watch.  Brownie and Baby are now loved members of our family.

Some dogs guide the blind, others alert the deaf.  Ours comfort us when we are down, and snuggle when we’re hurting.  Somehow, they know when and how they are needed, and they are there.  No questions, no judgment, just love.

Metamorphosis

Ten years ago, my youngest son was struggling to get enough nutrition, and was admitted to the hospital due to failure to thrive.  At six months old, he weighed a whopping nine pounds.  He was 7.5 pounds at birth.  On top of that, I was dealing with a 5yo autistic child with violent behaviors, a deaf child, and two more with speech issues.  We were living 1500 miles from most of our family, and I had my first major breakdown.  I was diagnosed with Major Depressive Disorder, and started on medication.  That helped a little, but it wasn’t till a year later, after my second major breakdown, that I finally got into therapy.  By then, my son was much improved, and my daughter’s violent outbursts had eased a bit.  I’ve struggled with my depression ever since.  In 2002, we moved back to Utah, and I found a new therapist.  I also received a new diagnosis – Obsessive Compulsive Disorder, Generalized Anxiety Disorder, Social Phobia, and Panic Disorder.  That was on top of the Depression diagnosis.

Because of my kids special needs, I have had to be an advocate for them.  When we moved to Utah, we made the decision to homeschool them, because the stress involved with sending them to school was just too much.  At that time, all of them would have needed IEP’s, and that would have necessitated numerous meetings with the school, teachers, therapists, counselors, etc.  We found that taking a more relaxed approach to schooling and focusing on what worked for our family was a much better solution.  So began our metamorphosis from a public school family to an unschooling family.

We tried a number of methods for educating our children at home, from state-sponsored curriculum to hand-picked materials, to our current method, unschooling.  This works for us for several reasons, not the least of which is the fact that unschooling allows our family to adjust to my abilities as they change.  Just because I have a chronic illness doesn’t mean I can’t teach my children.  On days when I am in a lot of pain, or need more sleep, the kids do more on their own.  When I have more energy, I direct their studies more.  We can school in our pajamas, and I can teach from my bed.  Not only that, but the kids are learning valuable life skills by doing more, rather than simply reading or hearing about things.

Several months ago, ABC aired a program that portrayed unschooling in a rather poor light.  I wrote the following in response:

My 19yo daughter is currently one semester away from graduating with her AS degree. She made the Dean's list her first two semesters, and is on track to do so this semester as well. She's also the historian for the Skills USA group, and took 2nd place in the State Skills USA competition. She's profoundly deaf, and was unschooled from 6th grade on. Clearly, she was unprepared for college.

My 10yo son, who has been unschooled his entire life, taught himself HTML in a few days. He's now working on Java. He's already created a couple websites, and has written a few games for them. As for socialization? He has many friends, is actively involved in cub scouts, and chats with online friends of all ages frequently. Recently, he brought home tickets for the upcoming Scout Extravaganza, and had all ten sold within a couple hours. To neighbors, not his parents. Got more tickets from the den leader, and promptly had them sold as well. He loves to cook, and does so frequently. He is quite capable of reading a recipe and following the directions. He hasn't needed assistance in the kitchen for over a year now. Clearly, he is unprepared for life.

That's just two of my children. The others have similar stories.

We have few rules, but we rarely have problems with misbehavior. The kids behave in a responsible, trustworthy fashion, and generally self-regulate. They know the difference between right and wrong, and are not afraid to speak up when they see a problem. They get along quite well with pretty much anyone they meet, and succumbing to peer pressure is a non-issue.

Are they perfect? Far from it! But we have tried to raise them with a sense of self-respect and value, and it seems to be working. Unschooling won't work for every family, but the example ABC gave is a faulty one at best. Unschooling doesn't mean ignoring your children, or allowing them to do anything and everything they please. It means providing a solid foundation of love, trust, and values, followed with an environment full of opportunities for learning and growing. It means being willing to answer questions without freaking out, and providing opportunities for exploration. It means trusting your instincts, as well as that of your children.

For our family, with my physical and mental health issues, as well as those of our children, unschooling has proven to be the best choice.  Some may think that I can’t possibly be chronically ill and properly educate my children, but as the saying goes, “the proof is in the pudding”.

Just Buck Up!

Ever had anyone say that to you?  Ever said it to anyone else?  Did it work?  For someone who is mentally ill, telling them to “just buck up”, or “just deal with it”, or “pull yourself up by the bootstraps” is pointless, and in some cases, counterproductive.  You see, mental illness is not something we choose. 

Mental illness is a disease.  It is not something that is chosen, but something that chooses you.  Sure, everybody has days when they feel blue, or anxious, but that is not the same as the depression or anxiety suffered by someone with those mental illnesses.  Someone with true depression experiences a depressed mood more days than not, over at least two weeks, while someone with anxiety experiences feelings of anxiety to the degree that it interferes with living a normal life.  For someone like this, telling them to just deal with it is not helpful at all.

So what should you say?  Well, that depends on your relationship with the person.  If you are close friends, then just be there.  Ask what you can do to help them get through this.  Offer to help with housework, or meals.  Spend time with them.  If you are just acquaintances, then don’t push them.  Tell them you are sorry they are feeling that way, but respect them, and let them be.  You could ask them if there’s anything you can do to help, but the biggest thing is to not judge.  Above all, do not say “I know how you feel!” Because you don’t.  Unless you have the same diagnosis, you simply can’t know how they feel.  

So be a friend, and educate yourself about the illness.  Everybody is different, and everyone deals with their illness differently.  Just know that nobody with an invisible illness chose it, and if there is anything to be done about it, they are likely already doing it.

Priorities

Because of my physical disabilities, I spend most of my time either sleeping or sitting in my chair at the computer.  Thankfully, my children are old enough that they don't require constant supervision, and what supervision they do need is quite readily done from my seated position.  They are also very much my helpers.  I do go to the grocery store, usually with at least one of my older daughters, so they can push the cart while I use my walker.  They also get things down from high shelves, or bend over to get things from lower shelves for me.  My children range in age from 6-19.  Each of them has chores they are assigned every day.  I monitor their jobs, and for those things I am unable to check, the older girls check for me.  For example, I am unable to go downstairs, so I depend on the kids to make sure the bathroom down there is properly cleaned.  Everyone except the 6yo does their own laundry, and my husband takes care of hers as well as ours.  The rest of the kids take turns doing the family laundry, such as towels, bed linens, etc.

For years, I struggled with the idea that I was an inadequate mother.  My house is generally cluttered, and sometimes downright messy.  But after years of therapy, I have come to realize that the important things in my life are good.  My children are all intelligent, creative, reasonably polite, and kind to one another.  They are certainly not perfect, but for the most part, they are good kids.  We have never had problems with dishonesty, disrespect, or rebellion.  They generally get along with others, and are quite capable of dealing with adults in a variety of situations.  As for my house, yes it is cluttered, but we don’t have a problem with mice or bugs, and the basics are always done.  I’ve had to adjust my idea of the basics, but we manage.  For us, the basics mean the dishes are done, food put away, bathrooms kept clean, and garbage taken out regularly.  Making beds is way down on the list, and dusting happens maybe once or twice a year.  It just isn’t a big priority.  We’d rather spend time doing things as a family than dusting.  We don’t have a lot of knick knacks anyway, although we do have a lot of books.

So, while some may think I’m a lazy mother, I’m finally comfortable with my life.  I realize that what other people may think about me doesn’t matter.  They have no way of knowing what it is like to be me.  I may have a chronic illness or two, and things are certainly not the way I envisioned them two decades ago, but my kids are thriving, my marriage is strong (we’ve been married over 21 years, and we are still happy), and life is good.  That’s all that counts.

Do You Know Anyone Like This?

Do you know anyone like this?  One day they're using a walker or wheelchair, then the next, they’re walking around fine?  Or perhaps they're at a church meeting for part of the time, then suddenly gone.  Maybe you see them moving around their house without a problem, but when they're in public they use a wheelchair or walker.   Do you wonder what’s going on?  Are they really ill?  Or are they just “faking it” for the attention?  That’s just one of the challenges of invisible illness.  With many invisible illnesses, symptoms come and go.  Or else the severity of the symptoms depends on the weather, how much sleep was had the night before, food eaten, other illnesses (such as a cold or the flu), or a number of other factors.  Simply put, rarely does any invisible illness follow a set pattern, other than that of unpredictability.

Christine Miserandino, in her article titled “The Spoon Theory”, talks about this very subject.  She discusses the importance of prioritizing our activities according to how much energy, emotional and physical, we have to give.  “The Spoon Theory” is a must-read for anyone dealing with invisible illness, whether personally, or in a loved one.  Ms. Miserandino’s article can be found online at www.ButYouDontLookSick.com.    

Sometimes I wonder what my neighbors think of me.  Do they see me walking to my car, and wonder why I don't use my walker?  Or did they notice a few weeks ago when I walked into church on my own two feet, then used the walker the rest of the time?  Did they wonder what was going on?  Possibly, but I don't know.  The truth is, I don't always need my walker, especially for short distances.  But if I am stiff or sore (like after sitting for an hour on a church bench), I am likely to need it.  Sometimes I use it just to allow me to conserve my energy for other things I have planned later.  A few weeks ago, I went to church and stayed for the whole three hours of meetings.  I haven't done that in a long time, because it drains me to do it.  I did it that time because my sister was visiting with her children, and I really wanted to attend with her.  I knew it would drain me, and that it meant I would not be able to do much during the following week, but I hadn't seen my sister for two years, and wanted to spend every minute possible with her.  So I went, and spent much of the following week recovering.

Maybe people judged me for that, maybe they didn't even notice.  I try not to let it bother me, because God knows my heart, and what my family thinks is far more important than what anyone else thinks.

Why Me?

My 17-year-old daughter, who has Rheumatoid Arthritis, posted the following on a RA support site in response to a pastor who claimed that illnesses were somehow a response to our wrongdoing, and could be "prayed away".

The reason why we have illnesses is because they are trials. As in, God gave them to us. It is all part of God's plan for us. Yes, Jesus suffered for our sins, but our illnesses are not punishment. They are to make us, well, tougher in a way. It's like to make a beautiful vase out of glass, you have to put the sand into the fire to make the glass in the first place. It's like we're all grains of sand and we're gonna turn into beautiful, perfect pieces of art. But we have to go in the fire first. :) P.S. I believe in the power of prayer, but I do not believe that if I pray, my RA will go away. Unless, of course, God wants that for me.

Yes, I Really DO Need the Wheelchair.

Several months ago I walked into my local Walmart and went to get one of the electric wheelchairs they have for customer use. The greeter stopped me, and asked if I really needed it. He was nice about it, and I simply replied that yes, I do need it, and he left it at that. The incident was a minor one, but it was frustrating nonetheless. You see, I am a young-looking 44-year-old woman with no visible handicap. Yet I am unable to walk more than about 50 feet without some sort of support. Since that incident, I have obtained a rolling walker with a seat, and no longer need the wheelchair. The walker gives me enough support while walking, and the seat allows me to sit when I need to rest.

My 17-year-old daughter E. has rheumatoid arthritis. She had a much more humiliating experience with the wheelchairs. E. and my husband went to the store (Walmart) one evening for a few things. She went to the wheelchairs, and started to sit down, but was stopped by the greeter, who questioned her need for the wheelchair. E. explained that she has RA, and cannot walk for long without support. Still the greeter refused her the use of the wheelchair. My husband stepped in and again told the greeter about the RA, at which point the greeter said "I have RA, and I don't need the wheelchair!" She seemed quite clueless as to the very real difference between an older woman (this woman was in her 60's, at least) with RA, and a 17yo girl with RA. My husband insisted on the wheelchair, and the greeter finally gave in, albeit very reluctantly. When my husband and daughter arrived home and related the experience, my daughter was in tears over the resulting embarrassment. My husband and I then returned to the store and spoke with the manager about the situation. We explained the reality of invisible disabilities such as RA and Ankylosing Spondylitis, and asked that the staff be given additional training to help them understand that just because someone doesn't look disabled doesn't mean they aren't. We were no longer questioned about our use of the wheelchairs, and the greeters have been much friendlier to us.

Since that time, E. has obtained a cane and gotten stabilized on medication, and no longer needs the wheelchair for shopping trips. Nevertheless, we still believe that it is important for store personnel to receive appropriate training regarding invisible disabilities, so as to avoid a repeat of our experiences.

First Post...

For the last 20 years, I have dealt with the challenges of various invisible illnesses, both in my children, and in myself. The week of September 14-20, 2010, is National Invisible Chronic Illness Awareness Week. This prompted me to start this blog, wherein I will explore the various challenges of dealing with a chronic illness that is not visually apparent.