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.

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.

World Autism Day

April 2 has taken on a new meaning in our family.  Yesterday we observed World Autism Day, now that we have officially welcomed Asperger's into our lives.  It's one of those days that snuck up on us. Although the fact is, it's been living with us for years.  Autism Awareness Month has a whole new meaning for our family.

It's been a rotten week for me.  Asperger's (with a little help from life in general) has kicked my butt from east to west.  I really don't know how moms with more autism in their lives do it because I've completely forgotten how to laugh this week.  I've been frustrated and angry, not with Noah, but with AS.  I'm angry with what I feel has been stolen from me and I'm frustrated for what my son goes through.  He deserves better than what I have been able to give him, especially this week.  I'm exhausted and frustrated by life in general, concerned for my mom and grandmother, still grieving over the loss of my grandfather, I'm frustrated for my son, my health is continuing to decline, and my meds are taking their own toll.  Depression has made a nest in my brain and my body.  And that feels like just the tip of the iceberg.  Frankly, I am surprised to still be standing after these past four weeks.  I am just plain worn out and in need of a break.  I'm feeling very weary, burdened and defeated.  But I have to keep moving because I'm the mom and this is what I'm supposed to do.


Saturday I felt like I had a pretty good handle on things.  Better than the rest of the week, anyway.  Until I got to the grocery store, was flipping through my grocery notebook and found a note that I'd written to myself several months ago to send pictures of the kids and notes to Denny.  I felt like I'd walked face-first into a concrete wall.  I couldn't help it, I just started sobbing in the middle of the store.  Poor Avery, sitting there in the cart, looking at me and asking, "Mommy?  Mommy?"  The week just caught up with me.  The enormity of all my responsibilities, the importance of the meaning of World Autism Day, and then finding the note to myself.  So, what happened next?  My guardian angel showed up.  She's the mom of one of my high school friends and has shown up twice to rescue Avery and me from disastrous grocery shopping trips.  The first time was right after Noah's diagnosis.  I'm sure my friend would find it amusing that I think of her mom as my guardian angel, but we live on similar planets.  She's raised (is still raising) a daughter with Down's Syndrome.  I don't share details with her mom, I keep it general, but just seeing her and knowing that someone else out there cares enough to stop and talk to me helps.  Mrs H, if you ever read this, thank you for caring and thank you for being my guardian angel.  You have no idea how much just your presence helped calm me yesterday.

Today, our church's children's ministry marked Autism Awareness Month by holding an Autism Awareness Workshop.   I'm very proud of our church and very grateful to our leaders for doing this. It was difficult for me to sit through and I had to keep wiping tears as I listened to the specialist describe my child.   Fortunately, I was with good people: children's ministry leaders and other parents who are on my planet, so it was okay (given how teary I've been all weekend and that I sobbed during church, I'm surprised I did as well as I did during the presentation! Yay me!).  We're one of the few churches in the area with a ministry specifically designed and trained to aide children with special needs so they can participate in the children's ministry activities while their parents attend praise and worship, worry-free.  Being a part of such an accepting church has made things with Noah's diagnosis much easier.  Knowing that he is Noah, and not "that ill-behaved child," or Asperger #1, has helped all of us.  Noah's case is mild enough that he is not officially part of the special-needs ministry (in need of an aide), but knowing that his Sunday School leaders are educated and trained to handled anything that may come their way because of him is a comfort.  Knowing that our church leaders and the congregation as a whole are educated and that Noah's behavior doesn't raise many eyebrows is a comfort. To belong to a church family where people do their best to understand Noah and his behaviors (instead of questioning me about the dosages of medications he's not on and if they should be increased) is powerful.

I'm still learning to embrace AS and everything that goes with it.  I've lived with it for Noah's entire life, but didn't know what to call it (well, I did, I just didn't want to.  Denial is a terrible thing to do to your child.).  Now I know he couldn't help it.  I'm trying to help him.  So this month, I'm lighting a blue light in my heart for my son because I love him dearly, he means the world to me and I will do everything and anything I have to do to help him through this.

For more information on Autism and Asperger's Syndrome, please visit these sites:
http://www.autismspeaks.org/
http://www.autism-society.org/
http://www.lightitupblue.org/

General Catch-Up, in re: Noah

PRIVATE SCHOOL
I was going to wait and write about this once I was fully calmed down and could write without bitterness and tears, but three weeks have passed and I have realized that could take several years (haha).  Many of you have asked what happened and rather than go over it many times, it's just easier this way.  I will do my best to make a long story short, but as most of you know, that's difficult for me.  :)
After the first nasty email, Shawn requested a meeting with the head of school, which was granted to us and preceded by another nasty email.  No longer were just the teachers complaining about Noah and his behavior, but now students and parents were as well.  Parents were threatening to pull their children, the school would lose precious funding and the sky was falling, all due to my child.  We met with the head of school and after 5 minutes, my skin was crawling.  I wanted to cry over the horrible things being said about Noah, but I was too angry.  Shawn paced the small office and I was afraid to look at the man for fear my eyes would somehow gain the ability to shoot lasers and catch the head of school on fire.  He wanted a plan he and the teachers could implement to help Noah, but it was clear from his reactions to our many suggestions, that there was never any intention of setting such a plan in place.  He had made up his mind: not only was this school "no longer a good fit for Noah," this school did not want Noah any longer.  We went home and drafted a letter to the school notifying them that we were pulling Noah and requesting half our tuition be returned.  Our request was denied; had Noah been expelled, it was explained to us (in the third nasty email in less than a week from the head of school), we might have had a chance in recouping some of our money.  But because we chose to remove Noah before it came to that (which is what the school wanted all along), we were out of luck.  So sorry.  I went with Noah to clean out his locker a few days later and the only person who was amicable to us was the secretary.  Bless her heart, she gave Noah a hug and told him she was really going to miss him.  I believed her, too.  Two of his four core teachers came out to say good-bye, one of them only to make sure we didn't take anything from his locker that didn't belong to us.  The head of school did not come out of his office until we were headed out the door with our heads held high and Noah asking if we could go to Chik-Fil-A for lunch.  In the past I've always thought he was using opportunities like that to play us for sympathy.  Now I know this is how he deals with things.  That part of his life was over and we were on to the next one:  his grumbling tummy!
HOMESCHOOLING
After nosediving off a very steep cliff into Homeschooling 101, making a few frantic phone calls and even more frantic emails, researching various homeschool curricula and making some decisions, we decided to just stick with what he's already been learning at his old school.  The curriculum wasn't what we had a problem with, so why throw more roadblocks into Noah's life by starting completely over?  We were easily able to order all of his school books online and just had to bide our time until they came in.  After much agonizing, I was finally ready to turn in my intent to homeschool and curriculum forms.  Much to my surprise, the woman in charge of that at the school board has a very normal looking office.  There are no steps descending into hell, no fiery pits or fire-breathing dragons.  She herself is a kindly, patient older woman, no warts or greenish hue to her skin.  The police were not called because I had pulled my son 3 weeks ago and was just now filing my paperwork.  I didn't have to threaten to call a lawyer or present any of the VA state laws I had prepared about my rights to homeschool my child.  Also to my surprise, she did not ask why I had my pulled my son in the middle of the school year (or even for an exact date), what school I had pulled him from or even really bother to read my much-agonized-over paperwork.  She did make sure we are doing at least math and reading, "Because that's all we really care about."  I was a little flabbergasted over that as I blubbered my way through saying, "And social studies, and science, technology, art, language arts and anything else our son decides he's interested in."  She replied, "Well, that's nice," signed off on my paperwork, stamped her approval, photocopied it and bid me good day.
So, we are now officially a week into homeschooling.  Taking two subjects a day--one core subject (a chapter a week in 'real' school, so a chapter a day at home), plus vocabulary and reading every day.  There are so many funny Noah-isms about homeschooling that I'm sure I can't think of them all.  He sing-songed his way to the dining room table the other morning that he was going to school in his pajamas.  On Wednesday he quipped that nothing compares to doing schoolwork with a cat in your lap and the aroma of Mom's pot roast in the air.  While he has learned that Mom and Dad are the toughest teachers he'll ever have, he's also learning the benefits to homeschooling.  He no longer has to wait to have questions answered, at the possible expense of forgetting his questions.  Papers are graded, responses are given and questions are answered in his time frame.  We are slowly finding our way through homeschooling.  It will always be a learning process for all of us.
OCCUPATIONAL THERAPY
I don't know if I've ever mentioned it, but Noah was not originally approved for OT.  We had the evaluation and based on the findings at that time, the therapist recognized that Noah had some difficulties, but did not refer him for therapy.  It was the same day we received Noah's diagnosis and we were feeling dumped in left field.  "Congratulations! You've won a lifetime of Asperger's Syndrome.  And now we're not offering you or your child any help or services.  Have a great life!"  We wanted to scream, "WHAT NOW?" in the parking lot of the hospital.  I was beyond relieved to receive two phone call messages and an email from the same therapist  the next day, saying that after sleeping on Noah's case, he had changed his mind.  Praise God!  At Noah's first session, he stepped back for a minute, lowered his voice and apologized to me, saying that the one hour evaluation with Noah had not allowed him to appreciate just how severe Noah's deficits really were.  I shrugged my shoulders, put on my best game face and said, "Welcome to our world." That was the night I made the hour and a half drive home in tears.  Last week, four sessions in, Noah's therapist feels he is already making good progress.  He (as well the M.Ed. who administered Noah's cognitive testing) has noticed marked differences in Noah's motor skills, coordination and thought processing versus his intelligence.  So, Noah has the intelligence to do something, but not always the ability, if that makes sense.  And sometimes he has the ability, but not the follow-through or the know-how.  Following directions is a serious issue with him (yes, I know, it's a serious issue with any ten year old boy!); we have to take things step by step: I give him the first step, he does it, then I give him the second step, and so on.  Many times, Noah needs reminding or physical help.  Sometimes he isn't able to follow directions at all (as his OT found with some written directions recently), even if they seem quite simple to us and are below his age level.  As his mom, it's difficult to see all of this, to admit that my child is much further behind that I've realized or have been able to comprehend.  And there are a lot of forehead-smacking moments for myself.  With Noah's intelligence, there are many things I've taken for granted with him and neglected to teach him.  Just because he understands rocket science doesn't mean he knows how to wash his hair.  We are seriously starting over with many of the basics. I've been trying to take our Tuesday night dates and use them as teaching moments (being careful to not turn them into nagging moments) for eating and self care skills.  Noah has been going with me to 'work' on Thursdays, so I'm using those days as teaching days for conversational skills and other necessary social skills (NEWS FLASH: NOAH--not I--received a congratulatory phone call today from one of my Thursday regulars on how well he is doing in that area!!!!!!!  Color me PROUD!!!!!).  We are also doing sensory diet training--oral stimulation in the hopes of helping with his tooth brushing issues (when, oh when, will someone come out with a toothpaste that is acceptable to children on the spectrum?), brushing (I use a special therapy brush to brush Noah's arms, legs and back--more about that in a minute) and Noah does joint compressions on his own because he didn't like the way the therapist originally had us doing it.  So, brushing:  Noah purrs.  Simply loves it.  I tease him that all he needs is someone rubbing his feet, someone else feeding him grapes and another person offering him water while I brush him. Every 2 hours, followed by his joint compressions (he does wall push ups and jumping).  I was nervous about this because I know some children really don't like it and it can send them through the roof.  It can cause adverse affects (worsening behavior; the idea is to calm them by releasing endorphins.  Sometimes, that's too much for some kids) for some kids.  Noah gets a little sillier afterwards, but overall, he loves it and does well with it.  We have to do this for the next 2-3 months, regroup and see where we go from there.  Noah also loves OT.  He begs me to leave early and the idea of an appointment is somehow lost on him in this case, even though he understands it perfectly well in other areas.  Somehow he thinks if we arrive early, he'll get extra time in the therapy room.  His favorite so far appears to the be the giant swings.  And it doesn't matter which one, as long it's hung from he ceiling and he can do daredevil acrobatic stunts from it.  I'm seeing a whole different side of Noah I never knew existed, which has been fun, and a bit scary (do we have the medical insurance to cover the broken bones that could happen?!)!  He's never been a daredevil, he's always played it safe.  When he's had accidents while mountain biking with Shawn, it's taken us months to get him back on the trail and that's only after buying a full-face BMX helmet and body pads.  He just doesn't normal take chances, but he seems to feel safe in the OT room and has been taking them left and right!
OTHER THERAPIES
Noah has also had his physical therapy and speech evaluations.  He was referred for physical therapy (she will give us about 4 weeks to go over and learn an in-home routine for us to follow, turn us loose for a few months, then we'll return for a follow up), now we are waiting for insurance approval and appointment scheduling.  I've been waiting for 3 weeks, but I've spoken face-to-face with the person in charge of all of that.  She is a nice woman, currently being forced to scurry between two jobs at the hospital and I'm doing my best to be patient (which is not my strongest suit).  I do believe I'll be making a phone call on Monday though!  As for speech--okay, let me explain this because most of you Noah and are wondering why on earth my child, who speaks so well, needs speech therapy.  It's actually called Speech Pragmatics--more social skills.  We had the evaluation, I filled out the parent forms and at the end, I believed we were all on the same page.  The therapist understood I wanted Noah to receive services and it was all tied up in a neat package.  Not so easy after all.  We received her evaluation and recommendations and I had to wonder if she had interviewed the same child I'm raising.  Most of her observations were correct.  However, I did have to wonder about other things she said the and the recommendations she made.  She encouraged us to keep him in Scouts and church activities (duh), stating that Noah would eventually catch on.  My problem with that is if Noah hasn't 'caught on' in 10 years, when will he?  And Noah does not have the ability to pick up on social cues, so while keeping him in these activities is wonderful and helpful to his self esteem and learning processes, they aren't necessarily good for his social skills.  I also have to wonder what ten year old boys this therapist knows who are going to teach other ten year old boys proper social skills instead of just ignoring them, as happens to Noah.  I have yet to witness anyone in Noah's pack tell him, "Dude, calm down, that's not cool.  THIS is how you should be acting," instead of turning their backs.  I forwarded the evaluation on to Noah's social skills therapist and she wondered the same thing, then encouraged me to call the hospital and ask for another evaluation.  I did, was told I didn't need another evaluation, just needed to be an upset mommy who wants services for her child (yay for me!).  The therapist is going to give us a month, regroup and see where we're at then.  I agree with her, one-on-one with an adult in a small room probably won't teach Noah much in the way of social skills.  I plan to encourage her to take him around the hospital (I've read this is what many do, so why hasn't this therapist heard of it yet?) and help him engage other children and adults in proper conversations.  Whatever Shawn and I are doing isn't working and we need help.  So now, we are waiting on insurance approval and appointment scheduling for that as well.  Again, a phone call on Monday!
LIFE IN GENERAL/MISC
Another recommendation that has been made is that Noah have more one-on-one time with boys his age who don't have Asperger's and who do exhibit proper social skills.  Well, that's kind of difficult.  Noah doesn't have friends, so who's going to be the guinea pig?  PLOP!  And a solution lands in our lap. A good friend has been coming over for dinner on Monday nights with her two boys and graciously allowing them to stay with us while she has some Mommy Time to herself.  J and B are 13 and 10--WOO HOO!  Yes, we hit the jack pot with one-on-one time for Noah.  And, as we get luckier, they are two very laid back kids who understand Asperger's, are sensitive to it without treating Noah any differently AND exhibit proper social skills (their mom swears it is only for our benefit.  Pshht.  Whatever. I don't believe her, but I'll take what I can get!).  Last week didn't go so well for Noah.  The other two boys were properly patient with Noah (while I was internally yelling at them to go ahead and let him have it) as he headed toward a meltdown, bossing them around because they weren't playing the video game the way he wanted them to, etc, etc.  It got to the point where Noah had to leave the room because we knew things were about the blow skyward.  We sent Noah to get ready for bed and the other two boys were able to finish their game in peace.  Noah had to come back out once he was calm and apologize.  J and B now have permission to not treat him with kid gloves.  They know they won't offend me or Shawn; no name calling or insults, obviously, but they are allowed to say to Noah, "Dude, that's not cool to treat me that way and I don't appreciate it."  Things like that are fair game.  He needs to hear it from someone other than us.  Hearing it from a parent is only nagging.  When we talk, he hears the voice of Charlie Brown's teacher.  Hopefully, hearing it from his peers will help.  And quite honestly, I couldn't have chosen better peers to help with this.  The thing with Asperger meltdowns is most of the time by the time a child gets going, he or she has no concept of what's happening.  The child has completely lost control and isn't capable of reigning him/herself back in at that point.  If I had let it continue, as I said, it would have gone skyward and hell could have frozen over.  Noah would have embarrassed himself, J and B might have been embarrassed for Noah and they would not have known what to do.  Removing Noah was the only thing to do.  He needed to separate and calm down, then be brought back in.
Noah received his volunteer application forms at the center this week where I 'work' on Thursdays and he's incredibly excited.  Our assistant director caught my eye over his head and even though I know we are all trying to be very subtle yet excited for Noah's sake (he's thrilled beyond belief to be official), I wanted to leap over the table and chairs in between us and hug this woman, who has always been one of my favorite people.  When I used to take Avery with me (before he was mobile and became a monster!), the joke was that he was the youngest volunteer.  Noah is so excited to have that title now.  Both of my boys have now proudly been in our newsletter.  I am blessed beyond blessed to work such an wonderful organization who cherishes such young volunteers!
We are slowly settling into our newest new normal, again.  Avery's behavior has taken some interesting turns, having his brother home all the time and learning that he's no longer my number one concern 90% of the day.  It has been interesting having the ten year old tag along to the 20 month old's Mommy and Me classes, where he is miles taller than the oldest child there.  Avery is torn between being happy to have his brother along and having temper tantrums like I've never seen before.
I called a friend the other day (she also home schools) and she asked me to make it quick, it was just before 9 and she was getting ready to start class.  I cringed at how well put-together she is and how messy I am.  I laughed inwardly and though, "Oh, that's so not going to be us!"  I figure at this point, as long as we're getting it done, we're doing pretty well!   And you have to look at what works for your family, too (that's what I'm telling myself, anyway).  To think of I used to be disgustingly overly organized and on time (early, even!) for everything (before I had children!).  When we do finally settle down for school, Avery seems content with the preschool coloring sheets I pulled out of the attic for him from my teaching days.  One of his new words is "school," which he likes to do alongside his brother.  If Noah is reading a chapter, Avery likes to do the same thing.  I feel like I have my hands very full, but I don't usually realize just how full they are until someone points out that I'm dropping everything!  I am going to have to make a few adjustments, I've realized.  Sadly, one of Avery's Mommy and Me classes will have to go.  I need my Fridays back.  I've lost the point of being a stay-home mom and have managed to fill up every single morning of our week.  It's not fair to me or to the kids to constantly be on the go.  Some days I'm not sure I'll ever adjust to having both boys (certainly rethinking that "I want a baby" thing!) all the time and making everyone understand that Mommy doesn't need an audience in the bathroom or in the shower has proven difficult (there is no such thing as privacy with a 20 month old or a 10 year old without social skills).  Six months ago I was adamant that I was not homeschool mom material and never would be.  Three months ago, I was still pretty certain I would never be homeschool mom material but if it became necessary, God would equip me for it.  And now?  Now I cling to my husband's leg every morning as he leaves for work, begging him, "Please don't leave me with them!  They're horrible!"

My Letter to Asperger's Syndrome

Dear Asperger's,
I don't like you.  I blame you.  You aren't welcome in my home.  You've turned our lives upside down, inside out and backwards.  I want to put you in a box and ship you off to some far away galaxy where you'll never be heard from again.  I know you've been here for years turning things all askew and it's only just now that we've been able to give you a name, but if it were up to me, you never would have been here in the first place.  You have ostracized my son, left him wondering what is wrong with him.  He isn't invited to birthday parties and he's never been to a sleepover.  He's been on one play date in 10 years.  He doesn't have friends and is an endless target for teasing and bullying.  Because of you, his school year has been disrupted and his desire for a normal life is not going to be realized.  You've left me alone with my thoughts, watching my son from afar while sitting right beside him.  As Noah grew from infancy through toddlerhood and into boyhood, you've left me wondering what is wrong with me as a mom.  I've never been able to figure out why I haven't been able to bond with my son, what part of motherhood I'm getting so wrong that everyone else seems to be getting right, what I'm doing wrong.  What is wrong with me???  Why can't I do anything right?   Why is everyone else so happy while I'm always so frustrated?  The anger and self-loathing I have felt over the years have been unbearable.  Because of you, I'm mourning parts of our lives that we may never experience, such as that special mother-son relationship Shawn tells me is so imperative to the growth of boys.  We miss out on vacations and other family excursions.  The biggest form of affection I receive from Noah is a head-to-head bump when I ask for a kiss.  I've become the mom who reminds newly pregnant moms about all the things that could go 'wrong' with their babies.  Because of you, people stare and wonder why I allow my son to misbehave the way he does.  Because of you, people aren't understanding at all.

On the other hand.....
Giving you a name and openly inviting you into our home has given us great new insight into Noah.  Having a name for you, being able to learn about you and research you has given us hope.  Being able to implement plans for Noah based on what we are learning and working on with his therapists gives us hope.  Now that we have a name for you, I know I wasn't doing anything wrong as a mom.  I was doing the best I could, the best I knew how, I just didn't have the right materials for myself and Noah to work with.  I was frustrated because I didn't have a name for you.  Instead of mourning, we're celebrating the life that Noah has ahead of him, celebrating each 'tidbit of normal' God gives us, celebrating each new accomplishment.  I'm beginning to develop that bond I've always so desperately wanted and that Noah needs.  Noah has OT on Tuesday nights because of you, so we have a weekly date night now, just the two of us.  I love that time with him and he seems to look forward to it too.  Noah has a name for why he behaves the way he does and seems relieved to know he's not a dork.  He has a good grasp and better understanding of you than some adults.  For certain, he appears to be handling you better than we are.  I cherish our head-to-head bumps and I'm working on developing our mother-son relationship that will help him grow and mature into a young man.  We're learning how to incorporate you into family vacations and excursions so Noah isn't overwhelmed and we can all enjoy these times together.  I'm finally able to accept my son the way he is.  Instead of trying to change him, I'm learning how to help him cope with you (as I'm learning to do myself), as well as teaching him life skills and social skills to cope with the world because it will not cope with him.  I'm finding that many of the characteristics and personality quirks I love so much about him are actually due to you. You are what makes Noah special, you are what makes him Noah.  And oh, how I hate admitting that.  Because God included you when He made Noah, my son isn't capable of lying and he's also not capable of being mean. He's a little too honest at times, which can come across as mean, but it's not intentional.  He does his best to be sensitive, even though he may not always be politically correct!  Noah has a big heart, a great sense of humor and a gigantic brain.  We're going to make the best of the end of his school year and give him the best life we can.  It may not be normal by any means, but in this day and age, I have to question anyone's claim to normalcy.
(And honestly, I'm wondering if giving you a name has explained a few things about my own childhood and given me some insight into my father's world.)
I guess, in my own Aspy way, I'm saying thank you (don't get used to it) for giving me a second chance with my son.
Sincerely,
Noah's Mom

Who Said Parenting is Easy?

It was with great heartache this morning that I sent my child back to a school that quite obviously does not want him.  He does not fit their norm and they don't know what to do with him.  They have literally set him aside (inside the classroom and out), apart from the rest of the students.  He sits in the back where they can do their very best to pretend he isn't there (although, as loud as he is, I don't know how that is possible!).  The other students don't want to play with him or sit with him during lunch.  So, we're leaving him in school to socialize him but no one will have anything to do with him?  My husband worries how 'yanking' him from school will affect him years from now.  I worry how leaving him in a school where even the teachers ostracize him affects his self esteem and other aspects of his personality now (and later in life).   We asked him how he feels about the school and he told us, "It's not that bad.  It's better than (the public school he went to).  I'll be okay."  That made it hurt even more; my 'drama queen,' who makes mountains out of molehills, was downplaying things to make it easier on me.  Hearing that a teenager in our church killed himself last week hit me hard and my heart hurts so much for his mom.  No parent should ever have to bury her child under any circumstances.  The thing is, when I think about Noah's future, that is something I worry about.  He has been bullied since kindergarten and he thinks that's just how things are.   Shawn and I try to teach him differently, but until people start treating him better, he won't know better.  He has always known he was different, but could never put his finger on why or how.  The things I've heard him say about himself scare me.  I can't walk through Noah's wilderness for him, but as his mom, shouldn't I be doing what I can to ease his burden and make it easier to navigate?

So this is where it begins again.  I need to find a professional advocate for Noah.  I need to word a constructive response to the head of school's email referring to my son as a "negative impact on the learning environment."  Then I need to send that to the teachers, the head of school and the board.  I need to outline a working program for Noah and ensure the teachers put it into place.  That much is the 'easy' part.  The difficult part will be getting them to teach and pay attention to a child they don't like and don't want.  And we have to make sure they do this even after we tell them he's not returning next year.  Just 4 more months until the last day of school....