stepping to the music we hear

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away. –Henry David Thoreau

My daughter has Asperger’s Syndrome.

Wow.  That’s hard to just say.  It doesn’t ever get easier for me.  I thought it would. But, surprisingly, it is still difficult for me.

And she follows the beat of a different drummer, a beat that is wildly foreign to me.  A beat that often thrums it’s way into my heart and pierces it.

And sometimes I thrill in the differentness of the music she hears, and sometimes I want to drown it out.

My daughter is 12 years old, so you would think I would feel like someone who has experience–but as soon as I think I can pick out a melody in her music, it changes on me and I am left feeling completely inadequate as I try to hear the new stanzas and measures.

In a way, though, I also follow the beat of a different drummer.  You see, for me, I can appreciate the research and ideas from professionals with regard to Asperger’s, and I use that as my foundation, but I sometimes don’t do things their way, and I often follow my own intuition, after studying out research and professional recommendations and ideas.

In fact, the Spirit is far, far better at teaching me how to hear my daughter’s melodies than any professional or book or study.  And that sounds a bit daft, but it’s absolutely true.  And, with the Spirit, I don’t have to know everything–I don’t even have to know why I do something–I just have to follow what He tells me and it never fails.

There is only one caveat: I have to be listening.

And sometimes, I am not.

So, we handle Asperger’s probably a bit differently from other people.  And it’s not because we are right and they are wrong–it’s just because we are different and so are they.  And because of those differences in our lifestyle and family, we operate using different methods.

I would like to share with you some of what we have done. I think everyone should do things uniquely, because every single person is different, but perhaps some of what I have done can be a springboard of thought for something you can do.

One of my daughter’s greatest gifts from having Asperger’s is having the ability to know exactly how to get to the heart of her siblings and family members.  Often, she uses this for good, and attempts to say or do things to help her family feel good inside.

The flip side is that she knows exactly how to hurt everyone the most, but I don’t believe she does it out of spite.  I believe she does it in an effort to gain some sort of control over her relationships.

However, in the midst of one of her meltdowns, when she tells me, “I don’t want to be a mom because then I will be fat like you,”  I have to admit I am not thinking that she is hearing the beat of a different drummer.  Sometimes I have actually wondered if she hates me.

In the past, I have actually lost it because I forget that she truly isn’t saying it to be mean.  She is just trying to maintain some sort of control, and when she feels like she is losing control, she often resorts to the method of little jabs to get ahead.

So, what have I done?  I will admit that I feel like the majority of the time, I have failed.  And there have been tears.  Lots of them.  But, I keep trying and that is what is important.  Eventually, I will get to be the mom I should be.  I will never forget praying over my daughter after a particularly trying day and reading these words from President James E. Faust:

The handicapped are not trial.  Those of us who live free of such limitations are the ones who are on trial.

And I know that is true.  And, boy, I feel it everyday.

1. Pray

I know it sounds trite, but I don’t mean just praying. I mean a working prayer. A prayer focused on the child but only saying what the Spirit prompts you to say for the child (and yourself).  When I have done this, the Lord has opened up my mind to things I had never considered.

Inevitably, every time I pray I get the assurance that my daughter has a pure heart and that she is not judged by Heaven the same way I sometimes judge her.  Sometimes, I feel like she is being disobedient, but a vast majority of the time, Heaven disagrees with me.  A vast majority of the time, she just didn’t understand what I wanted or what was going on.

In fact, the Spirit has told me almost every time I ask that her deepest motivation is to please me.

And remembering that changes my entire attitude toward her.  However, I have to remind myself of this on an hourly, sometimes more than that basis, because some days it is almost impossible to remember that.

2. Prayerfully ask the Spirit for ways to explain the Asperger’s to my daughter and her siblings.

We are very open in our home. We don’t hide things, because we subscribe to the belief that Heavenly Father put us together so we could help each other with our most intimate struggles. Therefore, it would be contradictory to keep things to ourselves.

I prayed and told the children (and my daughter), that in our minds, we all have paths and bridges that get our thoughts and actions in and out to other people and the world.  I explained that every person has unique paths and bridges, but that people with Asperger’s are more likely to have bridges that can get stuck or paths that are more hilly and hard to climb, which can be frustrating (and consequently make you upset) and sometimes take longer.  For others it could be a completely different explanation, but for our family, that is what the Spirit said would work.

3.  Let go of any idea that I can stick to the three hour block consistently at church and don’t feel like I am unrighteous for having to be flexible.

I was so very blessed when my daughter was very, very young to have a visiting teacher whose daughter had Asperger’s.  Her daughter was several years older than mine, and I learned so much!  My visiting teacher did not consistently bring her daughter to church at that time, and never for the entire three hours. I never quite understood that. (Later on, her daughter worked up to going all the time.)

Fast forward to when my daughter was a little older.  Church was too loud, too stuffy, too many people, too much noise, too long, and too much pressure for my daughter.

When she was in Primary, the majority of her time there, people did not understand her.  Because she gets so much social anxiety, she looked like she was unhappy, and the teachers didn’t like that.  I think it made them feel self-conscious, but often, they would dislike her greatly because she didn’t smile or communicate much.

My daughter is very, very good at discerning how adults really feel about things, and she immediately picked up that they didn’t like her, and it went downhill from there.  When I tried to talk to the Primary presidency and teachers, I was met with disbelief.  They didn’t believe me that she had a disability, and they didn’t even try to understand. (With the exception of one Primary, because one of the presidency members had a son with autism–they really tried to help and it was so nice!)

They just got offended because she didn’t smile and give them hugs, and that she wouldn’t respond the way they expected.

Still, I tried to keep her “mainstreamed” because I felt guilty that I was spiritually wrong for sometimes not wanting to send her to Primary.  Weeks and months went by, and she developed migraines every Sunday.  She would come home and throw up and have to lie down in a quiet, dark room for the entire Sunday afternoon.  She couldn’t even eat.  She would cry before church. She would cry Saturday night.

I poured out my soul to Heavenly Father, and He reminded me of my visiting teacher and taught me the wisdom she had in her choice to be flexible with church attendance.  I opened up myself to the idea that some days might be too hard for her at church, and the Spirit confirmed it.  There are some days the Spirit tells me would be too much.

However, usually we find a happy medium.  Almost 100% of the time, she is able to go to sacrament meeting.  Most of the time she now can go to young women Sunday meetings because her older sister is with her, but sometimes she comes with me to Relief Society, and sometimes she sits in the foyer.  Sometimes she just needs to leave Sunday School a little early and have some time alone or with mom.

I think another reason why I wanted her to go to class and everything was just the pressure.  It was looked down on for her not to go, and I didn’t want people thinking badly of her.  Especially when she did not (and still doesn’t) bear her testimony in public very often, and even if she does, she doesn’t cry.  I was afraid of what people were thinking not just of her, but of me.  I was afraid that they thought I wasn’t teaching my child the gospel, that I wasn’t fully converted to the gospel, and that I had a “problem child.”

Luckily, the Lord has seen fit to put me through some experiences in life that have taught me not to worry so much about that, and I was able to have the courage to let it go.  So what if the Relief Society president gets irritated when I bring my 12 year old?  So what if the Primary president becomes personally offended that my daughter doesn’t go to activity days?  It helps a great deal to remember that the church’s programs are here to support and help the family, not the other way around, and that mother and father are the ultimate authority, and family is the basic unit of the gospel.

(Incidentally, our current ward is very supportive of us and love my daughter, and could care less if she comes with me.  They are just happy to love her, whether or not she looks like she loves them back.  They are the closest thing to heaven I have ever experienced in a church situation.)

The point is, things have gotten much, much better now that I am not so concerned with 100% attendance.  Because I let it go, it’s actually gotten a lot better.  It is important to note, though, that it’s good to keep your mind open to different, out-of-the-box ideas Heavenly Father might have so that your child can stretch as far as he/she can.

I have more to say on the subject, so I will do a part two, but I would just like to close this post with a beautiful thought on healing.  Because we can pray for healing on all sides–healing for our children, ourselves, and for those who may misunderstand us:

Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us. …

The healing power of the Lord Jesus Christ—whether it removes our burdens or strengthens us to endure and live with them like the Apostle Paul—is available for every affliction in mortality. –Elder Dallin H. Oaks

Other Posts In This Series

1. stepping to the music we hear (This post)
2. stepping to the music we hear, part 2

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Tagged as: differently abled