Parenting Struggles

Most days I really struggle as a mom.  I have many doubts about my abilities to raise my two boys, especially Noah.  I love them both so much.  I want so much for them, only the best of everything.  I want them to be successful and happy.  Avery is plenty happy.  But I'm never sure if Noah is happy.  Personality traits aren't the only things that separate my boys, though.

I often try to place myself in Noah's shoes, wondering what is going through his mind as he sees me interact with Avery.  I worry that he thinks I favor his little brother over him, that I love Avery more, that I don't even like him.  I tell myself that I try hard to interact positively with Noah, but it can be very difficult for a variety of reasons.  The truth is, as much of a pistol as Avery can be, he is a very easy child (knock wood). He snuggles easily, responds easily to emotions, is loving, responsive and outgoing.  I love snuggling with both boys, but Noah can be very awkward and uncomfortable.  Other than showing Noah proper ways of expressing love, affection and emotions, I don't know how else to help him with these sorts of things.  I have calls into several counselors, waiting to hear back.

I also worry what it is like for Noah to have a two year old brother who obviously and easily excels at the things Noah wants to be good at, but struggles with.  Noah would give anything to be able to pick up any musical instrument and play it well.  Unfortunately, my dear son is not only tone-deaf and unable to keep a rhythm, but he also has difficulties with hand-eye coordination.  He also got frustrated when he realized he had to practice to be good at an instrument.  Avery however, has been able to keep a beat practically from the day he was born.  Noah strives to be athletic and there are many sports he wants to be good at.  Noah's poor gross motor coordination (ie, general awkwardness) and poor hand-eye coordination seem to stall him.  Again, Avery seems to be naturally athletic already.

Tonight, Avery and I were tossing a ball while Noah ran around the yard in his own little world, playing whatever games he's got going on inside his head.  Several times I tried to involve Noah, inviting him to come play with us.  He insisted that he wanted to be left alone to play by himself.  At this point, I worry this is something I have created or caused in Noah.

I want my boys to be close, to love each other as brothers, not to fight with each other because one thinks Mommy loves the other one more.  All Avery wants is for his older brother to pay attention to him, to play with him and be responsive to him.  There are times I have to worry about Avery's safety and well being because of Noah's impulsivity and lack of self control.  When they do play together, Noah tends to forget he is older and needs to be a good example.  He tends to forget he is bigger and faster, that Avery looks up to him and isn't fully capable of doing all the things Noah does.

I struggle with these things I need to teach Noah.  He is so smart and such a good kid.  I want him to know I believe in him, I want to teach him how to show appropriate emotions and affection.  I try to talk to him, but frequently things go in one ear and out the other (show me a child that doesn't happen to).  He isn't able to comprehend what he is doing or how he is behaving and how it affects others.

These are some of the things I cry out to God the most.  Help me with my son.  Help me help him.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  Philippians 4:6-7 (NIV)

I'll Take Asperger's, ADHD and Generalized Anxiety Disorder for $100, Alex

So, we're here again....  I met with the child psychologist who gave us a second opinion on Noah's diagnosis(es) this morning.  This particular doctor did more extensive testing: social/emotional, educational, parent feedback, feedback from Noah, and so on.  We sought out this doctor because even after Noah's original diagnosis of Asperger's, we still suspected ADHD and we wanted to rule out any other learning disabilities.  We were also looking for some suggestions to help Noah.

I liked this doctor immediately when we first met her last month.  She is a mother of 5, a Christian who is deep in her faith, soft spoken and easy to work with.  I later found out she's a former school psychologist fed up with the school system, now working part time for the university we took Noah to.  I felt confident with the choice that was made for us (when I called to make the appointment, we were assigned a case worker; I was not given a chance to choose who Noah saw, so I have God to thank for this one!).

Anyway....

Dr. B confirmed the diagnosis of Asperger's.  She also confirmed my suspicions of ADHD (sometimes being right isn't always a good thing...) and also added a diagnosis of Generalized Anxiety Disorder.  Because anxiety is part of Asperger's, I asked her how she could differentiate that the anxiety he's experiencing is beyond what is encompassed with his Asperger's.  She showed me the scales that Noah and I both filled out, telling me that anything above 65 indicates a significant issue.  Most of Noah's scores were 80 or above.  I also asked how ADHD and Asperger's are differentiated, because they have so much in common.  Again, she showed me some of Noah's scores on the Brown's ADD Scale, as well as Noah's self-reports and a few other things that were tested.  Noah definitely qualifies for the diagnosis.  My poor son.  Thankfully, she did find any learning disabilities.  She had many positive things to say about Noah, for which I was grateful.  She found him to be very insightful, aware and bright for his age.


So, what do we do now?  Now I find Noah a counselor.  His low self esteem, the beginnings of depression and anxiety are all reversible and treatable.  Dr. B indicated that Noah is very bright, insightful and aware for his age and believes that because of those characteristics, he will respond well to counseling, along with the proper type of behavior modifications and "brain retraining."  I need to help Noah learn to change his thinking about himself and see himself in a more positive light.  Integrating him in more extracurricular activities that he excels at and likes are also part of increasing his self esteem and decreasing his anxiety.  As for Asperger's and ADHD, those are pretty much lifetime issues--but they are still treatable and manageable.  There is counseling, behavior modification and "brain retraining" for those as well.  Social skills training is another good thing.  I'm still trying to find a mentor for him (young adult or high school age), to help reinforce some of the things we're working on, to model appropriate behaviors and so on.  Then, of course, there's medication.  Noah and I go back to the developmental pediatrician next week.  I'm going to push for a continued increase in Noah's Paxil and I'm hoping that with the added diagnosis of GAD, she'll be more amenable to a higher dose.  I'm also going to push for something to help Noah with the ADHD.  We have to be careful here because traditional stimulants tend to have the opposite effect on persons with co-morbid AS.  They can actually make things much worse in these children.  I'm hoping this doctor will be willing to try new things.  I'm still trying to set up an appointment for Noah with another doctor because I'm really not pleased with how things are going.  She's very conservative, which I want, but I also want someone is willing to try new things: conservative, yet aggressive, if that makes sense.  I've found out about two psychiatrists who specialize in treating "children like Noah," so I've been trying to get Noah on at least one of their wait lists.

So, how do we all feel about this?  I wish I knew.  I hate being right.  In some ways, it's a relief to have answers and a plan, but I'm also heartbroken for Noah.  He's a resilient kid, but just how much can one child take?  When I told him, it was the same flat response I've come to expect:  the typical Aspy response, if you will.  I didn't tell him about the GAD because it will literally just give him one more thing to worry about.  I tried to talk with him about our plan, the nice things Dr B had to say about him and that it's going to be okay, that we'll get through this.  He tuned me out (typical response) and began asking about dessert.  Sometimes he takes some time to process these things, then comes back later with thoughts and questions.

I guess that's all for now.

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)