Update on Seth's Aspie Journey

Seth has been off of medication for a few years now.  We wanted to give his body a break and wanted to wait and see if he would grow out of some the inattentiveness.

Well........he didn't grow out of any of it.  So he is back on Intuniv!  He started on 2/10 and we are seeing an immediate improvement in his attention (within 24 hours), his teacher sees it as well.  It seemed like the effects started to wane by the end of the first week.  We increased his dosage on 2/17 and he seems to have perked up a bit. We are hopeful that we're on the right track.  His evenings are kind of rough.  His mood and attention seem to tank right around 7:30-8:00pm.  We give him the medication at night because the last time he was on it he was nauseous and had difficulty getting his day started.  So far his days are going very well.  We don't mind if he tanks at home in the evenings.  We'd rather he tank at home than at school and so far this timing is working well.


Seth still struggles with sensitivity to loud noises.

Thankfully, though, he seems to be embracing and adjusting his life around it.  He wanted a smoothie and when I walked in on him making it for himself he had his sound blocking headphones on!  I'm glad to see him growing up and taking steps toward independence.  I should say, at times, I feel like he may never be ready to leave...or feel confident enough to be fully independent.  He has some very irrational fears.  He is afraid to walk to a neighbor's house (right next door) alone for fear of being kidnapped.  When he is in his bed we have to shut our bedroom door (visible to him) for fear of a black eyed monster(?) walking out of my room and killing him.

He still is (and will likely always be) stubborn and very set in his ways.  It is still difficult to change plans or adjust to life when things can't go as planned.  We are able to reason with him a little better because he is older.  Even though he may not like to change plans he isn't completely melting down.  He used to hurt himself (punch himself in the head, etc).  We have worked really hard to show him that part of living in our world means being willing to work with the unexpected changes.  As a family of 6 we are constantly having to adjust to life's ebbs and flows.   We have really tried to teach him and the other children to be flexible.  This is so hard for him, but,  I often hear him saying to himself  "It's not the end of the world".  He is talking himself off of the ledge. YAY for him that he is dealing with life in a positive way and helping himself!

I am thankful that he is very social, awkward at times, but he really wants to be involved in what goes on around him.  I know this is not always the case with Asperger Kids.  We are constantly working on what is socially appropriate and how to keep him out of the personal space of others.  It's awesome that he has a desire to be social and we are not fighting him to make friends.  We love that he is confident to talk to others.  I know that some kids have a desire to make friends but lack the confidence.

Our focus right now is on helping him develop the skills to be independent.  As he endures the adolescent stage we are excited to see how we will all mature and change.  We pray for the strength to endure it with him and pray that we all come out of it smiling :)

 

Sometimes I Forget

Sometimes I forget he has Asperger's. 

You know when you see something over and over and over again it becomes your norm and you forget it's odd or different.  I automatically take his hand down from his head when he starts to scratch or pull at his hair.  I no longer hear that he is repeating the last sentence he speaks in a conversation.  His facial tics become invisible.  My literal answers to his many 'common sense' questions don't bother me anymore.  I make him and myself vulnerable for a breakdown.

Simple things can and will set him off.  Loud noises.  Too much excitement or too many emotions.  Too many strangers.  People touching him, this includes most of his family.  The list goes on.  Any one of these things can trigger him....now, be me this past weekend and allow all of these things to happen in the span of a half a day.

The scene: A lovely, exciting, long awaited birthday party for a friend he hasn't seen in almost a year.  To make it worse I had planned to leave him there for the night...apparently I had forgotten we have a more complicated life than this.  Apparently, I forgot that he has AS and we need to tread slowly into these events.  Seeing his longtime friend would be enough to trigger some AS behaviors...the sheer happiness overloading his senses.  Then came the overstimulated and dispondent look on his face. The hand flapping and pacing told me this was not good.  Then the tears began to flow.  The unknowns were overloading his comfort zone.  He didn't want to stay, he didn't want to leave. Would I call him to say goodnight or would I forget like I did last time?   He COULDN'T decide what would be a better choice.  Too many negative feelings on both sides of the decision complicated his reasoning.  He was stuck in his confusion and couldn't get out.  So, he agreed to let me decide for him.  I decided he would leave with me.  I couldn't make my friend who was hosting a party be responsible for whatever he would do after I left.  I had to take him away from the friends, the games, the cake and ice cream.  Take him away from the loud strangers, and the feeling of missing me while I'm away, and from any of the unknown events that would take place.

I threw too many triggers at him at once.  I expected him to be ok.  I asked for too much.  He response didn't surprise me.  It hurt me for him and me mad at myself.  He knew his brother and sister would stay at the party, that was definetely fuel for the fit to last longer than usual.  He blamed me for taking him away from the fun, but he also would have blamed me for leaving him if he lost it while I was gone.  It was a lose-lose situation for me. 

So we left.  I stuck him in a car for 2 hours (again, not a bright choice)  and then sat him in a room full of people looking at him and touching him and talking to him...not a good combo since we still hadn't fully come down from the birthday party debacle.  He was so over it by the end of the day. I can barely believe that I allowed that day to happen. 

These are only some of the details.  Just getting these words out are enough bring the sting of tears back to my eyes.

I can't put the emotions of it all into words.  I can't tell you how it feels when you can't leave your son with a trusted family member or friend because there are too many unknowns for him, he can't handle it.  Nor can I tell how it feels when he tells me how uncomfortable he is when his family hugs or touches him.  I don't know how to explain all of this so you will be comfortable with it when you see him pulling his hair or repeating himself or screaming or behaving in a way you don't understand.  Words don't do justice describing any of these little/big things that we have to consider while we raise this beautiful child.  Sometimes I feel like I fail him. 

Thankfully, a little moral support is helpful.  A small word of encouragement can go a long way to a mom...any mom.  Those of us with kids on the spectrum have to make difficult decisions.  These decisions will break our hearts for them.  It's ok to ask difficult questions, we want you to understand what we are going through.  We want you to be comfortable with us, we want you to be comfortable with our kids. Help us help our kids by accepting them and all of the quirks-whether you understand them or not-and encouraging your kids to accept them too. 

Bright Sunshiny Day

Seth has been on Intuniv for almost 3 weeks.  I'm praising God that we see  positive results!  He has a crisp look in his eyes.  That is so refreshing for him.  He hasn't gotten distracted by his thoughts during a conversation at all that I've noticed, and believe me..I'm paying close attention.  If he loses track, like we all do, he has been able to pick right up and carry on. My heart is happy for Seth.  His wise and wonderful teacher has noticed positive results too.  He has finished his school work in an appropriate time, not being last to finish.  She also said something that stuck to my heart....she said 'He isn't standing out lately.  He is blending in with the rest of the kids.'.  Exhale.  Smile.

I encourage individuality.  I encourage my kids to stand out in positive ways.  Until now, Seth has been standing out..but not how I want him to or how he would want to (if he realized he were different).  The fact that he is meshing and blending in with the others in the class makes me very happy.  This is a definite benefit.

I have noticed a few other things side affects that I wasn't expecting.  Along with being ADHD-inattentive he also has Asperger's Syndrome.  The Intuniv is allowing him to be more of himself...more Asperger's for sure.  His interesting humor is more pronounced.  He is asking so many questions right now...common sense type questions.  It's almost like so many things passed him by while he was in his haze and now he is seeing things and wanting to understand them for the first time.  He is having more dramatic tantrums.  In fact, he was having a fit recently and I said to him, 'You are having a fit.  Is this really what you want to do?'.  His huge, crisp eyes looked at me and he yelled, 'Yes I do!! And..I'm NOT having a fit!  I'm having a TANTRUM as a matter of fact!!' His pre-Intuniv tantrums were more physical....jumping up and down, punching himself in the head, etc.  This was different.  He articulated his feelings.  Exhale.  Smile.

All of this success has come at a smallish price.  The medication has made him physically ill.  The first week was not great.  He had stomach pain, diarrehea, and vomitting.  I was giving him the medication reluctantly, it seemed counter intuitive to give him something that would definetely make him sick.  The information told me this was normal and it would soon pass...it did.  It took a few days for the worst of it to pass and then gradually the other symptoms have waned.  The side affects were worse when we first started and when we upped the dosage.  He is up to 3mg now.  Time will tell if this is enough. 

This little blog doesn't really do justice to the scope of his situation, but these are tidbits that I hope others will find helpful.  I know just typing it out is helpful to me, I get to reflect on the little things and be glad in them. 

Exhale.  Smile.

Aggravated with Asperger's & ADHD

So, Seth was diagnosed with ADHD 2 years ago and Asperger's Syndrome 1 year ago, and is exhibiting signs of Tourette's Syndrome. WHAT A ROLLERCOASTER!!! Rob and I tried a few different medications/dosages for him and he was miserable. His pre-existing muscle and vocal tics were worsened by the meds and it was just more than we could bear to watch....so we took him off all meds. We opted for a more natural approach to his treatment. Seth started going to a chiropractor for accupuncture and spinal adjustments 2x a week, that was a year and half ago. At first we saw a dramatic change. He was able to focus better than he had in a long time. What a peaceful place for us! Each week he got better and better....but now we are at a plateau. In fact, I think he may have regressed. One look at him and you can see that he is absent from what is going on right in front of him. The look in his eye is foggy and distracted. My heart breaks. I am considering medication again. Those very words hurt. I never thought I would go back to medication for him....but here I am, online and researching. I was introduced to Clonidine (which is used for many things) and is said to help with the tics that he experiences. When the Clonidine is taken with an ADHD med, it's supposed to suppress the extreme ticking that the med worsenes. My heart hurts. I just want him to be happy. I want him to learn. I want him to have friends. I want him to be confident. Right now he is lacking in many of these areas. My heart hurts and my head is confused.