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!"

The Thin Line Between Being Informative and Excusing (and Gossip?)

As a parent of a child with special needs, it's something I struggle with.  Am I informing this person of my child's diagnosis for the purpose of further educating the general (sometimes ignorant) public,  am I telling this person about it in an effort to excuse my child's unacceptable behavior (because let's face it, there are some behaviors that are inexcusable whether that child has a special need or not and most of the time, the child knows it) or worse: Am I gossiping about my own child?  Then there are the times you hear another parent in the crowd mention the word "Asperger" and you hone in on it like a pigeon, hunting down that other parent because you don't want to feel so alone.   Sometimes it's a thin line and even as a parent, it can be difficult to know.  Other times, it's just as black and white as Noah's world.   Two easy examples come to mind right away.

#1: A few weeks ago, I ran into a friend I haven't physically seen in almost two years.  I haven't seen her virtually in almost 6 months since I left the world of social networking.  I had Noah with me and we were trying to catch up while Noah bounced from one thing to another.  While we were standing in the coffee and tea aisle of the grocery store, she told me about her kids, I showed her pictures of Avery, caught her up on our homeschooling endeavors (not quite emotionally ready to write about that, yet) and about Noah's diagnosis.  She asked some good questions, mainly wondering what it would 'look' like to her, the uninformed.  Noah, helpful as always, played right along for me, checking out the fresh coffee grinders, inspecting each one, hoping one of them would automatically start spewing forth freshly ground coffee so he could see how they work.  He was being so careful not to touch anything he knew he shouldn't, but he was just so curious! I pointed at that and said to my friend, "That's Asperger's Syndrome.  At least, that's part of it."  I went on to explain it in a little more detail, how it affects him in public, in school, and at home.  THAT was informing my friend for the purpose of further educating her.  She asked, I answered.

#2: Last week, Noah was with me when I dropped Avery off at daycare before 'work.'  While I was signing him in, Noah curiously started going through one of the desk drawers.  He wasn't removing things, wasn't causing any problems.  I'm used to this and sadly, don't think twice about it.  Along with Asperger's, Noah is a naturally curious kid.  I keep a close eye on him, make sure he doesn't take anything or cause any damage.  Someone came through, slammed the drawer shut on him and said, "That is Miss (_)'s desk.  You don't belong in it."  Ouch.  She was right though, I was wrong and I made sure to say so to Noah in front of her.  Asperger's or not, Noah did not belong in that desk.  As his parent, I should have said something to Noah so this woman did not have to.  I desperately wanted to say, "Noah has Asperger's.  He's a naturally curious child and wasn't hurting anything," when what was really hurting was my parental pride.  I would not have been using his Asperger's to educate this person, I would have been using it as an excuse; AND again, Asperger's or not, I was wrong.  I should have told Noah "No," from the start.  THAT would have been an excuse for unacceptable behavior.  She did not ask about Noah's diagnosis, or if he even has one.

There are some thin lines too, though.  When I tell someone and get the inevitable, "Well, that explains a lot" response from someone who has known him a while, even if that person means well in their answer, I have to wonder what made me tell that person.  Am I gossiping about my child?  What business is it of that person's?  Or when I tell someone who doesn't play a big role in Noah's life.  He/she isn't Noah's teacher, Scout leader, family member or doctor, so what business is it of their's?  That person might not even be a close friend of mine who can lend moral support.  I might think I'm telling this person so he/she can understand my child better, but then I have no control over what that person will do with the information from there.  And I can't take it back after that!  Is this someone Noah would want knowing? I feel guilty for other reasons too: am I afraid of being a gossip, or am I ashamed of my own child? What is the real reason I don't tell people when I don't feel it's any of their business?


Then there are the days I feel like a homing pigeon.  I hear someone even whisper something that sounds like PDD, Asperger or Autism and I'm magnetically drawn to that person, immediately listening and sharing, whether I've been invited into the conversation or not (showing a little bit of Asperger's myself!).  I'm learning to be a little more tactful about inviting myself into these exclusive clubs, letting other parents know that I'm new to all of this and picking their brains for the greater good of my son, not for my own nosiness.  


There will be other times, through my volunteer work, that my knowledge will come in handy.  Not of Noah in particular, but of special needs and the things that go with it, in general.  Every little thing and person I encounter is teaching me something, which I in turn will use to teach someone else.  Mostly, I'm grateful for this knowledge and can take the rest with a grain of salt (it's the people who aren't in my position or without initials after their names who choose to impart their unsolicited health magazine-of-the-week knowledge on me that I find offensive).  I like to be helpful and informative, I like to hold the hand of someone who is walking the path I've navigated before (when I'm asked) and my shoulders are pretty good at holding other people up.  I just don't want to be the mom who make excuses for her children or gossips unnecessarily, so if you ever catch me doing that, please feel free to let me know!


*sigh*  It's a lot to think about! Maybe I'll just take a page from Noah's book and completely remove my proverbial filter....
(and for those of you who know me well, YES, I do have one...  I just choose not to use it!)

The Baby Bug and Faulty Memories

Noah, Miracle #1

Avery, Miracle #2

Not too long ago, Shawn and I jokingly made a deal: I could have 3 cats or 3 kids.  We currently have 3 cats.  We also recently realized we don't feel like our family is complete.  I haven't been told yet that I have to give up one of the cats or one of the boys we already have (or which one)!   Fortunately, Shawn just might have the baby bug worse than I do, so hopefully I won't have to make that decision!

 Shawn and I wanted a large family right from the get-go.  We both came from disconnected families and wanted to start over with own our family, making sure our own kids grew up in a large, connected family.  That didn't happen (the large family part). You see, it's been a long, hard road for us to get to a family of four.

Finally, the Furr Family of FOUR!

Both of our boys are miracles (I know, I know, all children are miracles, but I just feel like our boys are more special because of our circumstances).   I got sick right after Noah was born and between the meds and what the diseases were doing to my body, we were told there wouldn't/couldn't be anymore babies. When Noah was 3, we had a miscarriage that made that proclamation ring even louder and more dismal.  We couldn't believe it when I went into a remission several years later that my doctors had told us was impossible and still can't explain (I can!).  Our family was given a great gift when we were finally able to get pregnant with Avery.  We're just not ready to give that up yet, even with all the new problems I seem to be having and with Autism Spectrum Disorders 'apparently' running through our family (does one child constitute 'running through the family'?).  We don't want this to be something we regret later on in life, but we want to make the best decision for everyone concerned, including our as-of-yet, not yet conceived child.

The thing is, Shawn and I both have terribly faulty memories when it comes to raising infants.  We romanticize things a little too much.  At 'work' the other day, I was given the blessing of rocking and singing a three-month old little boy to sleep. And the smiles he gave me as he was falling asleep, oh, melt my heart!  What a joy it was!  I still get teary thinking about it!  It's been quite a while since Avery has settled down enough to rock and sing! During the snuggle song in music class, I watch with envy as the other mommies snuggle their little ones, while my rotten little one wanders the room looking for trouble!  Watching two of the pregnant mommies in our Mommy and Me groups grow each week has been an amazing thing to see.  I cherish all the extra cuddles and snuggles I get to experience now that we finally have Avery.  I cherish the 'tidbits of normal' when Asperger's isn't a factor and my boys share a good brotherly moment.

My boys know there are some books Mommy will never get through without tearing up, and I probably won't ever be able to pray over them without crying either.  Those are the times both Shawn and I remember.  He remembers taking over on the weekend nights with Avery for me, cuddling all night in the rocker/recliner, singing Beatles songs to him (completely undoing everything I had accomplished all week, getting Avery to sleep in his crib!).  We do remember Noah's colic and reflux (boy, do we!), but we conveniently block it out when talking about another child.  We remember his toothless smiles, his early accomplishments that we loved to brag about as first time parents.  I loved every single moment of pregnancy, feeling their little bodies growing inside mine, loving each little kick and roll they did (okay, maybe not so much when they jammed their feet in my ribs!).  Even their hiccups were fun!  I know there were labor pains (especially with Avery!), but again, I am conveniently able to not remember just how bad they were (even though one of my friends never misses the chance to remind me how I looked with my feet on the dashboard of the Jeep, clutching my belly,  screaming, "THIS HURTS!" when we dropped Noah at her house at 2:30 in the morning)!  Something about parental hormones and (lack of) brain function helps us remember the good times and block out the bad ones (is that so we have more kids?).  

I used to pine after having a daughter.  I actually argued with the sonogram technicians over both of my boys being boys:  "Are you SURE? 100% CERTAIN that is a penis on my child?  That looks like the umbilical cord to me."  As it turned out, the sonogram techs were correct both times.  And now, each night as I tuck my boys into bed and again as I check on them before heading to bed myself, I realize I wouldn't trade my sons for a million daughters.  So, if God sees fit to bless us with another child, he (or she!) will be welcomed with open, loving arms (colic or not--but preferably not!).  And who knows, maybe this time I'll argue with the sonogram technician again:  "Are you SURE?  100% CERTAIN there is NOT a penis on my child?  Are you POSITIVE that's just the umbilical cord?"

What Do You Mean I'm Not Super Woman?

Yesterday was a long, exhausting day for me, shuttling myself and Avery to various appointments and errands.  I felt it when I attempted to get out of bed this morning.  Every single bone and joint in my body was locked up and refused to move when my brain told them to.  When you wake up crying, it’s not good!  As I contemplated my next move (roll to the left and cry, roll to the right and cry, whimper pathetically while my husband helped me out of bed or just give up and spend the day in bed), I reflected on yesterday’s frustrating appointment with my neurologist.

“Well, you’re not Super Woman.”  I laughed as my doctor’s words rang in my ears, even 24 hours later.  What could he possibly mean?  Huh, I’m a MOM.  Of course I’m Super Woman.  Duh.  I’m raising two boys, doesn’t that in itself qualify me as Super Woman?!  Silly doctor man doesn’t know what he’s talking about!

I might believe I’m Super Woman, and my family might believe I’m Super Woman, but my body is a different story.  And unfortunately (fortunately?), my doctors agree with what my body is telling me.   Things are getting worse and it’s just plain hard to admit.  I have new symptoms that no one can explain and the old symptoms are worsening.  I can't tolerate the daily meds that are on the market, so all we can do is treat the symptoms.  There aren't any answers, there aren't any solutions.  I'm just plain tired of always feeling this way, of not sleeping, of the constant pain and extreme exhaustion.  God and I have plans for this life!  I have things to do and places to be; I don't have time for this nonsense!  My brain says go, go, go; my body says please no, no, no.  How much more of my life will I have to give up?  I still want another child, I enjoy being able to 'take care' of other people by providing meals and volunteering.  My –ologists are still pushing me to go to a specialty hospital with bigger, better, newer, more knowledgeable specialists, facilities, testing abilities.  I just want my current –ologists to figure it out or try something new!  I don’t have time for new specialists who are in a different state.  My kids don’t have time for me to go to new ones who are in a different state.  I don’t have time to start over with new doctors, new tests, new medications.  As I said to my neurologist yesterday, and as I’ve been saying to him and my other –ologists for months, in a perfect world, sure, I’d love to go to this hospital.  But I don’t have extended family to help me out.  So, I asked my doctor:  Who is going to homeschool Noah, take him to his therapies and other appointments, take Avery to his playgroups and make sure everything else I do gets done?  Basically, who is going to be me in my absence?  That’s when my doctor laughed, shook his head and said, “Well, you have to take care of yourself too if you’re going to take care of your children.  You're going to end up in a hospital one way or another eventually.  You’re not Super Woman.”

So, until my doctors figure either how to replicate me, or how to replace me, this very tired Super Woman is just going to keep plugging away until someone figures 'it' out or I fizzle out!  Eat my dust, you rotten little useless autoimmune system!
(What do you mean I have to get out of bed again tomorrow?  But I just did it today!  Can't that wait until Thursday????)

Good night all!

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