Noah: Testing, Labeling, Medicating and God's Glory

It's difficult to believe I'm the same mom I was several years ago.  Well, I suppose I'm not.  I've grown.  I've become a Mother Warrior.  I've learned that yelling and screaming don't get me what I want, that persistence does.  For all my years of battling against labels and medications, I've learned they both do have their places when used correctly, safely, by the right people and in the correct hands.  I've gone from dealing with educators telling me to have my son medicated to seeking out professional help and testing for Noah on my own.  I've gotten over my flat-out denial of Noah's differences to become an advocate for my oldest child and other children like him.  I'm over my fear of being home with my children 24/7 to become the homeschooling mom I swore I could never be.  I've educated myself and my family to the point of becoming a walking encyclopedia.  I've done research until my eyes have crossed.  I've picked the brains of others and talked their ears off to the point they avoid me.  I've put miles upon miles on my car taking Noah to one appointment or therapy after another.  These are the things you do as a mom.  Even when you are exhausted and want to give up, you don't.

So, all of that probably sounds like I'm rowing in a very stable boat on extremely placid waters, right?  Hahahahaah!  Nope.  Wrong.  I'm in rough waters that even the biggest boats shouldn't be in, I've lost both oars, I'm taking on water and I think those are man-eating sharks circling my boat....  (maybe those are the IEPs and public schools I'm so afraid of?!) Most of the time I'm scared out of my mind that I'm messing up.  Actually, I'm positive that I'm messing up!  It's always been that way for me with Noah.  Motherhood has never come naturally for me.  I've succeeded at most things in life, except for motherhood.  Noah and I had difficulty bonding and I always wondered what I was doing wrong (I still do, most days) that other moms were doing so right.  Watching other moms in public with their happy babbling babies who snuggled into their Baby Bjorns while mine screamed and struggled against his, I wondered what I wasn't "getting" that other moms were.  I remember crying with him one day, telling him that I didn't know what he wanted, that I didn't know what to do for him, that I felt just as lost as he did.  To this day, for the most part, I still do.  

Noah was finally able to finish up the rest of the psychological and educational testing this week that he began back in February.  This encompassed educational testing, social-emotional testing and psychological testing.  They tested his IQ, looked for other learning disabilities (including ADD/ADHD), his social/emotional age and a variety of other things.  I'm pretty sure the doctor who did the testing had diagnosed Noah with ADD/ADHD before she even began the testing (which, in a way is slightly reassuring to me).  We're hoping to not only get more answers and solutions from this testing, but some suggestions for homeschooling and home life in general.  We're also hoping to rule out any other learning disabilities while being able to take a diagnosis of ADD/ADHD back to the Noah's developmental pediatrician in the hopes she'll be more open to some more potential solutions in that area.    It would also be nice to have something thoroughly, genuinely positive to come from this testing for Noah.  We'd like to be able to go to Noah and say, "Yes, you have AS, BUT, because of that, you have this AMAZING ability!"

I've always hated the idea of labeling my child(ren).  When I first realized Noah's differences years ago, it was easy to deny them because Shawn denied them.  I can't blame it entirely on Shawn, because if I'd been a "real" mom, a good mom, a better mom, I would have fought harder for my son.  When Shawn and I finally came to a mutual realization and agreed something needed to be done to benefit Noah, we talked a lot about whether or not a diagnosis--a label--would actually benefit him in the short and long run.  We both felt we knew what was causing Noah's differences, but we had no guidance and no clue how to help him.  Without that definitive diagnosis--that label--we were stuck.  I still don't like labels and I still think that many times they are unfairly and wrongly used.  What I've learned with Noah though, is that in the right hands, when used responsibly, they are helpful and useful.  Noah's diagnosis--his label--has explained a lot about the past 10 years.  It's helped us start over.

I've also always hated the idea of medicating my child(ren).  My experience began with my student teaching days when one of my special needs pre-k students routinely fell asleep in his lunch every day.  We had suspicions that his dad was giving him his sister's Ritalin, but we couldn't prove it; to the best of our knowledge, neither could social services.  My experience continued when Noah's kindergarten teacher called us in for a conference (yes, I know, you've heard this already) and told us to have our son medicated--not evaluated, just medicated.  She continued with her campaign throughout the school year and complaining to the principal never got us anywhere.  I've also had issues in my own life with anti-depressants and I thought maybe I had to go through that myself so I wouldn't be tempted to put my child through it. I've been anti-medication now matter how well I've seen it used.  Then I got to my breaking point.  There's only so many times you can bang your head into a wall before you realize it's not doing any good.  Noah's developmental pediatrician, who diagnosed his AS, has prescribed Paxil, an SSRI.  She started him on an incredibly low dose, telling me that most children with AS respond to that dose.  We have been keeping in touch and I've been telling her that I don't think Noah is "most children with AS."  He has not responded this low dose.  She has increased it once and he still has not responded.  I'm due to email her again and in her last email, she had agreed she would continue to increase it until we reached a 10 mg dose.  It's an incredibly slow process.  I'm still hoping she will agree to add an ADD/ADHD medication, even if it's just a trial run.  I'm not convinced the Paxil alone will help Noah.  I don't want a zombie child, I only want a child who can function, take in what I'm teaching him and then apply it.

Until Noah is able to grasp things better (ie, until we see better results with the medication(s)), we've temporarily given up on OT and social skills therapy.  The good news is that Noah's social skills counselor feels as though he really was taking in what she was teaching him.  She was seeing positive results in the therapeutic setting.  We both agree the problem comes when his brain gets ahead of him in real-life situations.  He gets too excited, he gets ramped up, his brain is going 500 mph, but he still can't think fast enough to put two and two together to remember the skills he's acquired and use them.  I'm still searching for a speech therapist within easy driving distance; the closest ones our insurance company pays for are an hour away.  The good news there is I work with 2 retired speech pathologists at the center, so they've both tentatively diagnosed him for me and have been giving me free pointers on how I can help him at home.  We are sticking with the therapeutic horseback riding even if it puts us in the poor house (!), but so far, it's the only area we've seen results.  His instructor continues to be amazing and knows how to finesse him (another Noah Whisperer). Noah loves the horses and the horses seem to love him; his instructor and side walkers seem to enjoy him as well.  With this new session, he's been able to trail rides, tack his own horse, pick the shoes, brush his horse and lead his horse to and from the corral.  We are all so proud of Noah and his newest responsibilities!  The smile on his face the entire time he rides is worth everything we are doing to make his lessons possible.  Noah is learning, paying attention, making genuine efforts to do well, focusing and following directions well.  He's doing well with the lessons and making remarkable progress.

After a lot of crying, fence-riding and praying, we finally realized that homeschooling Noah next year is the best decision.  It's not the easiest decision, but since when is the right decision the easy one?  At one point we were honestly leaning towards sending him back to public school.  Shawn is worried about my physical and emotional health; he was concerned about how often he was coming home to find me banging my head against the wall (you think I'm kidding...).  I wasn't sure how much longer I could keep this up.  Noah's attitude some days is more than I can handle; that on top of his extra needs can be a lot to put up with.  In the end, I could not reconcile sending him back to the school I fought so hard to get him out of.  I could not give up on my son after only one semester of homeschooling--and only a semester of not doing it the way we had originally planned, at that.  We've signed him up for the online homeschooling program we like and had originally planned to use this fall and I'm hoping that will provide the structure we both need to make this work.

Somehow this is all falling into place because God wants it to.  Horseback riding is working out because it was given to us by God.  Riding is usually cancelled due to rain; for some reason, it has never rained on Mondays (Noah's riding days).  Homeschooling wouldn't still be the answer if it weren't what God wants for Noah.  I don't think medication, testing, diagnoses, everything that we are doing for Noah would be the answers if they weren't from God.  I still believe--I still know--He is in this.  Because of how Noah came into this world, I believe God has big plans for our son. I have to believe the Asperger's is part of that plan.   For a long time, I blamed myself, wondering what wrong I had committed that was so awful that Noah deserved this.  When I got sick, my guilt got worse:  Not only did Noah have his own difficulties (whatever they were), but now he also had a sick mom who couldn't care for him properly.  Our pastor showed us John 9:1-5 this week when Shawn and I told him this.  "As he went along, he saw a man blind from birth.  His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"  "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.  As long as it is day, we must do the work of him who sent me.  Night is coming, when no one can work.  While I am in the world, I am the light of the world."  Substitute blindness with Asperger's, and I have my answer:  my sins did not cause Noah's AS and somehow, yes, it will be used for God's glory.

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)