Showing posts with label Asperger's Syndrome. Show all posts
Showing posts with label Asperger's Syndrome. Show all posts

Monday, November 14, 2011

Medication, Schmedication

I always second guess myself when I ask to change or increase Noah's meds.  It's either something I need to get over--and therefore learn to trust my gut better--or learn to live with.

Sometimes I can pinpoint why we have a bad day:  I've lost my sense of humor and it remains hidden; Noah is having more difficulty than usual with self control, inattentiveness and distractibility; Noah is stressed about something--or I'm the one who is stressed and Noah "feeds" off mine; there's a time constraint, and so on.  Any number of things that might seem little to me or you can throw off Noah's entire day.  We pick ourselves up and move on, but Noah is still learning it's okay to pick up and move on.

Just as I can pinpoint the reasons for a bad day, I can pinpoint the reasons for a good one, also: I am able to relax and maintain my sense of humor while conquering all of my maternal and wifely duties; Noah is able to concentrate, stay calm and remain focused; we might take more breaks than usual; Noah takes things in stride instead of panicking about them--and so on.

Recently, I talked with Noah's doctor about either increasing his current medication or adding another one to the current one.  I'm really not in favor of either one, but I've reached a certain point where I've realized Noah needs some sort of "chemical help" in order to function.  Noah agreed that he wasn't feeling any different or better with the dose he was on.  Shawn and I have noticed small differences, but not enough towards what we have hoped for Noah.  The poor kid is rearranging store shelves (yet his room remains a disaster...), pushing buttons obsessively on lotto machines and any other machine, bouncing/rocking on the couch rhythmically and having numerous panic attacks.  I won't even begin to bore you with his inattention, lack of self control, distractibility and impulsivity!

Anyway, his doctor said we could either increase his current medication or add something at night that would carry over into the morning.  I did some reading about this medication and talked to other parents who  have had children on it.  My gut was telling me this medicine was wrong for my son.  It would make him sleepy at night, which was good.  But the "carry over," from my reading and talks with other parents, would most likely make him dopey and zombie-like.  It wouldn't actually be working on the brain chemicals and helping him in that respect; Noah would be compliant only because he was tired.  I didn't like the sound of that at all and it really scared me.  In the end, we decided to increase his current medication to see how he does with that.  He hasn't been on the increased dose long enough for us to see a change, so we'll have to continue to watch and wait.

In my mind, I have a course of medicinal action I'd like to see Noah be able to try.  Other parents with similar children have tried some of these and had great success.  The problem is finding a doctor who understands that while I don't have "M.D." after my name, I do have "Noah's Mom" after it.  I've done my reading, I've talked with other parents and I've seen their children in action.  It's frustrating having a doctor who views me as "just a mom."  Shouldn't that count for something??!?

Some of Noah's behaviors I'm learning to accept and see as "normal."  I constantly quiz my friends about their children who are the same age as Noah.  They laugh and assure me that while we may lean toward many Aspy tendencies, most of the things I ask them about are things boys never grow out of.  *groan*  Then there are the Aspy behaviors:  the ones I need to learn and accept because they are part of who Noah is and always will be.  I'm the one who needs to change, not Noah.


Noah is continuing to do well with horseback riding.  I'm just so proud of his accomplishments!  Atop a horse, Noah is confident, calm, stable and happy:  A complete 180 degrees from how he is with anything else.  He continues to be naturally successful with riding and is proud of his own accomplishments.  Noah is more independent on his horse now, riding without side walkers or a lead walker.  He has even begun trotting on his own!  His instructor is just wonderful, allowing Noah to go into the pasture with her to "catch" his horse, brush, feed, tack up and then untack when he's finished riding.  Noah has even been walking his horse into the riding ring on his own! This program continues to be a light for our entire family.  We begin our Monday mornings with the "pippy pops" (as Avery calls them) and it seems to center our entire week.  My face often hurts from smiling so much while I watch my son ride!  Noah was recently involved in a horse show at his riding center and won third place in the two events he participated in!  I was proud of him for not having meltdowns over not winning first place and understanding some of the other children in the event might not be as capable as he is with the horses.  Noah was upset about having to ride with sidewalkers and a lead, but we explained to him that in order for it to be fair for all the children, and because of all the commotion at the event, the walkers were a safety requirement.  Noah's instructor also let him wear his Halloween costume to ride on Halloween!  When we went trick or treating later that night, Noah told me his costume didn't feel complete with Justin!

We've found an excellent counselor for Noah; he homeschools his children with his wife, he is a Christian (so he shares many of our views and morals, which is nice because he's working with our son!) and has just been such a blessing to our family.  He is supportive of many of the decisions we have made for Noah in the area of  personal responsibility, and he's working with Noah on learning how to take more responsibility for himself and his actions.  They've only met a few times, but I do see a more confident child emerging from within Noah.  This gentleman takes Noah for walks during their sessions, and I know Noah listens and functions better when he is active.   They are also working on ways for Noah to control his panic attacks, rather than allowing his panic attacks to control him.  It's wonderful.

Noah had a great week last week.  He was really on top of his school work and chores, and was just a good helper in general.  On Tuesday I treated the boys to a morning at an indoor playplace.  Normally, Noah has difficulty with these types of settings and tends to get way out of control.  I had a talk with him the night before and again on the way there.  I reminded him that he would be the biggest and oldest child there, then asked him to tell me some ways he could set the example for the smaller children.  I also asked him to tell me how another mom would feel if she saw him careening towards her toddler.  We talked about safe play behavior and a few other rules.  I was so proud of him when he was able to maintain his composure (and even stand up for his brother against some other not-so-well-behaved children!) and still have fun!  We went rollerskating on Friday and again, he did a fabulous job of holding it all together!  He spent more time on his hands and knees than he did on his feet, but I was so proud when he didn't get angry and give up.  The lights and music were a little beyond what we can usually handle, but even with those disturbances, he still did very well.  I think the fact that he did not get angry and frustrated, and then give up, says a lot about how far he's come in the past year.  He was reduced to tears when one of his friends got a little bossy with him, but he was able to perk up and come out of it on his own.  Noah also had a drama club workshop that same evening and sometimes that can be a little much for him, but he seemed to do well and have fun there, also.

There have been a few "Noah-isms" lately that have had me laughing.  My favorite one was the other day on our way into the grocery store.  Noah piped up with "Come on Mom, let's show Safeway how the Furrs do groceries!"  I told a friend about it and she said, "With harnesses, helmets and squealing tires!"

Friday, May 6, 2011

A New Tool in Our Asperger Toolbox

There's a new medicine bottle on our counter tonight. This one has Noah's name on it.  It symbolizes everything I've stood against ever since Noah entered school and we were first told something was "wrong" with our son.  This bottle is one of the many reasons we pulled Noah from public school and put him in private school.  We were never told to have our son evaluated; instead, we were told to have our son medicated.

I met with the developmental pediatrician again today and we talked for two hours.  Thankfully, her nurse took Noah to the playroom because there many things he just didn't need to hear.  I cried out my frustrations to her, we went over everything that has happened in the past 6 months since she first diagnosed Noah, all the interventions we are trying, all of Noah's behaviors and anything else I could think of.  This doctor had completely rearranged her schedule to meet with me today and not once during the two hours we talked did I feel pressured to "hurry up and just get it over with."  She was patient, kind and understanding.  She listened to everything I had to say, asked questions and for clarification when necessary.

Finally, at the end, when I was drained of everything I had gone with, I said that I was afraid the next logical step for my son would be medication.  She nodded in agreement, then quietly explained our options to me.  She still feels that most of Noah's issues are internal (ie, Asperger's-related), rather than external (ie, ADD/ADHD-related) or a combination of both.  So, for now, we are heading down the path of Asperger's medications, rather than stimulants.  She feels one of these will be more beneficial to Noah than a traditional ADD/ADHD medication.  We will keep in close contact and reevaluate Noah several times over the next few months to make sure this one works and to see if he might need an additional medication (for example, a stimulant or something else to help ADD/ADHD).

This decision did not come easily for me.  For years I've been told I needed to medicate my son, and for years I've cried myself to sleep over it (especially lately).  I am so afraid of adding chemicals to my son's already chemically imbalanced brain.  I am afraid that one medication will lead to two, two will lead to three, and so on.  I am afraid the first medication and/or dose won't work and I'll have to put my son through a whole string of medications and dosages before finding the right combination for him.  I pray none of my anxieties will be realized and this will be easy for him.   I have wrongly sat in judgement of other parents who have chosen to medicate their children and to them, I apologize.  While I do believe some parents might choose medication because it's the easy path for unruly children, there are the rest of us who are genuinely trying to help our children just be able to function in society.  That's all I want for my son.  I love him more than anything; he's one of the few true gifts I'll receive in this lifetime here on Earth.  I want him to do better than just survive.  I want better for him than what he has right now.  As his mom, I owe it to him to try every avenue of support and help.   Please don't judge my decision unless you've walked in my shoes.

I talked with Noah about this new tool on our way home.   I've approached the medication issue with him before (would this be something he'd be willing to try if the doctor suggested it), so this wasn't entirely new to him.  I did my best to explain that this won't make the AS go away, that it is not a cure.  I told him that it will help with some of the behaviors and symptoms he has a tough time controlling.  I explained the ultimate goal with this medicine is to eventually wean him off it, once he has the tools and knowledge to control his behaviors and symptoms on his own.  I told him it won't work be magic, it will take several weeks for us to see any differences, and it could even be possible that we'll have to try more than one medicine.   Then we prayed over that medicine bottle, prayed for God's will, patience, strength, acceptance and perseverance.   Noah was eager to start taking it last night because, as he told me, "Mom, I just want to get better."  Somehow, I managed to keep those tears in until after he went to bed!  It never ceases to amaze me just how many times a mother's heart can break.  And it never ceases to amaze me just how many times God can put our hearts back together.

I am still not entirely comfortable with this decision, even though I know it was the logical next step.  Shawn and I are still not seeing entirely eye to eye on it either, even though we both know it's one of Noah's best options right now.  We are placing this in God's hands and going from there.  For now, that's all we know how to do.  And for now, it's the best thing to do.

2 Corinthians 5:7 "We live by faith, not by sight." (NIV)

Monday, April 4, 2011

A Horse Named Molly


I'm in love with a horse named Molly. 

In the last three months, since Noah's diagnosis with Asperger's Syndrome, we've met with numerous doctors and therapists.  We've been in occupational therapy since his diagnosis and social skills therapy before his diagnosis, are still waiting to be approved for physical therapy and have been denied for speech therapy.  We're on a waiting list for a second opinion (routine stuff), we're fighting with insurance over the speech therapy denial and are exploring other avenues of help for our son. We've pulled him from private school and begun homeschooling him.  We have read every resource we can get our hands on and picked the brains of everyone we can find.

We want to see improvements, we want to see something worth getting excited about.  Instead, we see more setbacks, more frustrations and no improvements.  We haven't dared to get excited about anything.

--UNTIL TODAY--

Noah had his first therapeutic horseback riding lesson today.  With all due respect to my husband (who is a really great dad), Shawn has not been able to get himself worked up about trying this latest avenue for Noah (he freely admits this).  He had to take Noah this morning because I had a doctor's appointment that conflicted with the timing of Noah's lesson.  It was the best thing that could have happened!   The excitement in my husband's voice and the look on his face are things I can't convey in writing, but it was amazing!  Both Shawn and Noah were so animated about it!  And the change in Noah today has been astonishing.  We did not have a single problem with him all day long.  He was calm, he followed directions, he listened, he didn't have a problem settling down for schoolwork, he played with Avery and was just a completely different child the rest of the day.  He was happy and agreeable.  He was able to stay on task and concentrate.  He even reacted quickly, when, unbeknownst to either of us, Avery had wandered behind Shawn's car as he was backing out of the garage.  Normally, Noah doesn't react to these sorts of emergencies.  Today, Noah grabbed his brother right out of danger in the nick of time, yelling to Shawn at the same time so Shawn was able to react in time.  Monday nights are usually interesting for Noah; a friend of mine comes over with her two boys for dinner and Noah acts like a wild man.  Tonight, he was calm and relatively collected.  He played an entire board game with his friends without trying to change the rules to suit himself, without a temper tantrum, without giving up halfway through and remaining relatively calm but having fun.  Shawn and I couldn't believe what we were watching.  Was this really our Noah?  Is it possible that we have finally found the 'magic button' for Noah?  Do we dare get our hopes up and get excited about this after only one lesson?  We desperately want to, myself especially.  Seeing how excited Shawn is (the man who refuses to get excited about anything), it's difficult for me to not get excited.  Shawn said Noah looked like a natural sitting on Molly.  Have we finally found something that Noah is naturally good at, something he will thrive in, something he loves and enjoys?

We found this equine therapy center through a friend at our church, who is an instructor there and is now Noah's instructor there as well.  I emailed her on a whim, knowing she rides horses, wondering if she knew of anyplace nearby that had a therapeutic facility.  I had no idea she's an instructor.  Not only is she an instructor, she's a teacher with a special education background.  We found out that after I submitted Noah's application, the waiting list jumped to 120 applicants. It's all fallen into place so easily. I have to believe that God led us here.  This is where God wants Noah to be, this is where things are going to happen for him.  I have to believe this is our chance at hope for our son.


Thank you, Molly.  Keep up the good work!