To my mother-in-law,

I love you!  Thank you SO much for taking Olivia ALL day yesterday.  Doing so allowed me to shop in peace.  (Even though you ended up taking her shopping with you!)  🙂  It was relaxingly lovely.  [insert contented sigh here] 

I was allowed to rest, which I’m especially grateful for since my kidney stones seem to finally be on the move — ouch! 

Christian was able to have two uninterrupted therapy sessions without her trying to answer all of the questions and/or take over as the therapist.

From the bottom of my heart, I thank you.  The words don’t seem quite enough, but that’s all that I have at the moment.  🙂

I spent part of my morning hunting down a single lab report of Christian’s from four years ago.  We were living in Florida at the time.  We never again saw the doctor who ordered that lab test.  I had received a phone call that the lab was negative, and that was that.  Thankfully, I think that I was finally directed to the correct department that actually holds that particular file.  Now, I will just wait to receive that report.

“A-day.”  Today.  Four years ago.  Christian was 21 months old.  I was 7 months pregnant with Liv.  I sat through four hours of interviews and watching Christian’s interactions between the developmental evaluators.  At the end they handed me a few pieces of paper containing information about autism and PDD-NOS (pervasive developmental disorder – not otherwise specified).  I was told that because of his age, they didn’t want to pin a specific “label” on him, but instead left it vague just saying that he had major developmental delays.  But the written reports that I received later said that Christian had significant signs of autism.  Yep, Christian had autism.

The doctor who was in this meeting told me to not even bother with a gluten & casein free diet.  It doesn’t work.  Everything good you hear about it is all in the parents’ heads…

…I’m glad that my gut didn’t fully believe her.  Christian has not been “cured” by diet, but it has certainly helped him be less aggressive, sleep better (yeah, it was worse before the diet change), and cut down on his need to constantly stim.  Diet can make a significant difference.

I left the developmental testing site without shedding a tear.  Actually, I wasn’t overly surprised to hear “autism” because I had been reading about it since September when the Christian we knew just slowly slipped away.

Brian was teaching at the time and wasn’t with us for the testing.  Christian and I stopped at his school on our way home.  (It was almost lunch.)  I walked into the secretary’s office and asked her if I could hang out for a couple minutes until lunch.  She agreed and then asked if I was OK…

…open the flood gates.  I could no longer keep the tears in.  Yes, the ugly cry was here.  I tried to explain through my sniffles what was going on, and she immediately told me that she’d go find Brian now.  She also convinced Brian’s principal that he needed to go home for the rest of the day, so that we could just deal with this new information.  I’m glad she did.  I think that we needed each other home that day as we started to contact family to let them know what was going on.

Therapies quickly followed — speech, behavioral, and finally occupational.

Thinking back, it doesn’t feel like “A-day” was four years ago.  But Christian is a fighter.  Oh, how far he’s come in four years!!!  🙂  He amazes me.

I’m also grateful to all the people who have helped Christian and/or our family over these last four years.  I appreciate, beyond words, all of your hard work, your determination, your friendship, your understanding, your love for Christian — without you, he/we would not be where we are today!!!

After Christian started feeling better from his illness, I started feeling worse.  Welcome chills, stomach pains, and the start of a horrible migraine.  After realizing this was more than a headache that would just go away on its own, I took a substantial dose of ibuprofen — usually that does the trick.  But not this time.  Actually my headache only got worse and was irritated by noise and light.  (Yes, and as Christian got better he only got louder — not good for the mama!)  I forced myself to make and eat supper although it was awfully hard to manage both and the kids.  After dinner, Brian watched the kids as I took the best shower ever.  No need to listen for little people fighting, or running the water, or needing to be wiped, or missing an important animal, etc.  Just the sound of the warm water and really not a single thought in my head.  It was glorious.  I managed to find my pain relieving spray (from when I “threw my back out” a few years ago) and sprayed down my shoulders and neck.  Fabulous.  I dug out my peppermint oil and dabbed some on my wrists and behind my ears.  Lovely.  Within the hour, the majority of my headache had vanished.  What relief!  I took the rest of the evening fairly easy and thankfully woke in the morning fatigued but fine.  (Insert sigh of relief here. 😉  )

I picked Christian up from school on Friday only to find out that he has not been doing so great in the “regular ed” Kindergarten room lately.  Doesn’t want to go and will only “behave” if seated on a teacher’s lap.  I guess he has also remembered that the music class room is in that end of the school and would rather go there instead.  (My boy sure does love to sing and dance!)  So, I guess that has been a wrestling match the last two weeks along with his obsession with needing “his words” on the classroom computer.  (Words like — Nick Jr., Paramount DVD, A Viacom Company, Warner Bros Pictures, etc. (yes, he does know how to read and type these all on his own)) They are hoping to rid him of this obsession by letting him type these words on the computer when he first gets to school tomorrow and then printing them off and taping it to the computer screen.  That way his words are always there and (theoretically) shouldn’t need to be retyped throughout the day.

Ah, I also found out on Friday afternoon that there may be a “loop-hole” that would allow Christian to continue to receive therapy services before the end of the school day (at least while he is in Kindergarten).  Great.  Also, we could keep our “regular” therapy schedule until that is a for-sure-thing either way.  Which would be great, but we had already informed his school of the change in his schedule and the therapists are all lined up to start with the new schedule this week, so Brian and I decided to start the new schedule on Monday anyway.  I guess, if Christian does fit the loop-hole, we could always switch it back to the earlier times.  I’m just ready for this to be figured out one way or another…

And Olivia has a new “greeting” for me every morning for the last couple of weeks — first she just screams for me until I at least acknowledge her being awake (this happens during the night, too).  When I arrive at her room, I am greeting with the “Mommy, I pee.  On my bed.  See?  Right here.  A lot.  Change me!”  Sigh.  Every day.  I am trying to remember that she has only been potty-trained since May, so this is very common.  I just wish it wasn’t every night (or a couple of times a night).  But, I am also thankful that we aren’t spending our money on pull-ups anymore.  This, too, shall pass, right???

Somehow last week managed to just slip away so quickly.  I honestly don’t know where it went.  And now, all of the sudden, it’s almost October.  I have a feeling that this week will fly just as fast.

Brian and I were able to get an afternoon away on Saturday.  It was lovely.  We went for a walk in the woods and actually held hands without little people pushing in-between us.  We enjoyed frozen custard without someone else asking for a bite (and another and another).  We stopped at the store and were able to actually take the time to read the labels on items without chasing down a small person who ran off.  It was peaceful.  Wonderful.  Much needed.

Life goes on, though, once you get home.  Brian headed out to do some bow hunting.  I hunkered down at home with the kids.  Christian ended up running down the driveway at top speed as I watched a truck rumble down the road (going at least 50mph).  His life flashed before my eyes, as I was too far away to actually do anything but shout at the top of my lungs.  Amazingly Christian stopped right on the edge of the driveway.  (I also stopped breathing.)  Christian didn’t bat an eyelash as the truck just drove by.  I let out a sigh of relief and was almost overcome with emotion.  Seriously.  I was so terrified.  My hands were shaking as I jogged down the driveway to walk him back to the yard where we had been looking for the missing “J” letter block.  Either the work that Brian has been doing with him about NOT walking in the road is starting to sink in or a guardian angel came down and stopped him from running in the road.  Maybe both.  For I was really scared this time that he and that truck were not going to stop.  Ah, yes, then we came back in the house where Olivia had decided that she needed to eat every piece of candy and/or chips in the house and if I didn’t cave in immediately she would throw a tantrum about it.  We listened to a LOT of tantrumming Saturday afternoon.  Sigh.  I was ready for another break by the time Brian got back from hunting.  But then it was getting close to bedtime, so that didn’t happen.  Perhaps that’s why I stay up so late and just veg…

Thankfully, Sunday contained a bit less drama. 😉

We are now into the last week of before 3 pm therapy sessions.  I will enjoy it while it lasts.  But I do think that the time between school and therapy will be a good break for Christian.  (It will also afford me the ability to not have to scoot across town so quickly.)

Christian has his first field trip of the year on Wednesday.  They are going to McDonalds for lunch and then to the woods which is just down the road from our house.  Christian should LOVE this trip.  He LOVES McDonalds.  Mmm…burger patties. 🙂  And he LOVES the woods.  I gave his teacher warning, though, that he loves to run through the woods.  We try to get there on the weekends and we definitely get our workout with Christian along.  🙂

As for me, I’m enjoying the fall weather. 🙂  I am looking forward to the leaves changing colors on all of the trees around here.  I’m just trying to keep the housework under control, but for some reason it always seems to get the best of me. 

I am also tinkering with the idea of writing a book, but not real sure what to write about.  A novel?  Autobiographical book?  Semi-autobiography?  I’m not sure exactly how to start.  Would people want to read about my life?  Our family life with autism?  Christian’s life?  Something totally cooked-up in my head?  I’m pondering…feel free to tell me what you think. 🙂

The “Mama Bear” has made a compromise.

After spending hours trying to figure out a way around keeping Christian in school full-day and then having therapy late into the night, Brian and I have reached a compromise with everyone involved.  Because of by-laws written in the state’s “intensive in-home therapy bible,” Christian’s therapy canNOT start before the end of the school day (i.e. 3pm).  Apparently this is a total inflexible rule, no way around it (unless your kid is being violent at school and the district mandates that the child cannot be at school more than a set amount of hours during the day — which the “evil thought” of hopping Christian up on gluten & casein for a few days in which he becomes totally violent and crazy occurred to me, but that would not be fair to Christian as it would take him a couple of months to re-detox from that junk).  Our senior therapist, AT, and I have talked to just about everyone we can talk to and everyone is “blaming” everyone else’s department for this rule (so who actually wrote it??)  We could push this a bit more, however, we have all decided that at this point in time it is not worth it as there will most likely be bigger “fish to fry” in Christian’s school career future.  Sigh.

So, the compromise — Therapy will not start until 3pm, which is the “official” end to the of the elementary school day.  However, Christian’s teacher, principal, & myself have already decided that Christian would get “early release” this year.  The plan is for me to pick Christian up everyday at 2pm.  We will then not have to race across town to get home, Christian will have time to unwind and have a snack (and arrange his letter blocks the way he needs to) before therapy starts at 3.  Most nights Christian will have therapy until 7pm then.  Our hope is that with the short break off between school and therapy, he will be able to go until 7, instead of starting to lose that ability around 6 (as what happens currently). 

We have a couple more weeks until this takes effect as therapists’ schedule need to be modified, but thankfully it looks like all of our therapists will be able to stay on our team.  🙂  I HUGE relief for me! 

I’m praying this will now all be able to happen as currently planned…

I totally promise that I have not fallen off the face of the earth.  😉

I am still recovering from that sinus infection.  It just really blew me off of my feet.  I feel like I could just sleep.  For a week.  Seriously.  Today was the first day in a while that I actually felt like I had some energy and could think a bit more coherently.  I will be praying that things only continue to get better from here.  🙂

I am more busy than I expected with Christian in school and then receiving therapy.  I was thinking that time wouldn’t slip away as fast, but, instead, it seems to be flying even faster!  I really don’t know how that is possible, but it’s true.  I am also trying to do my best to do something with Olivia every morning (story time at the library, errand running, walks in the woods, baking, etc.) so that she isn’t so “bored” around the house.  That is keeping me very busy, too.

And to veg (when able), I have been playing the online game of Latte Land over on CafeMom.  (Thanks, KK, for getting me hooked! 😉  )  It is right up my alley, as I loved working at a coffee/donut shop at one point in my life; almost applied for a job at Starbucks a couple of years ago; and have joking talked about opening a family-friendly coffee shop/juice bar playdate hangout.  Now, I can do it all online and not have the headaches of finances/supplies/employees/etc.  I am having TOO much fun playing, but it is also just a fun way to unwind and “meet” other moms. 🙂

I have also spent the last few days writing responses for the online book club that I belong to.  We read 2 autism-related books this month and, well, I seem to have lots of opinions and experiences that I just can’t keep to myself, so I have been writing non-stop over there.  (Sorry, ladies, if you’re tired of hearing from me. 😉 )

Oh, and then there is the thing with the therapy and getting Christian “pulled out of school to start therapy earlier thing.”  Yeah.  Headache.  I’m not really sure what is happening with this right now.  Unfortunately, I think it will involve keeping Christian in school full-day and then therapy after and more on weekends, giving up his free time and some of our “family time.”  Sigh.  With this we could also lose some therapists with scheduling conflicts, which TOTALLY makes me upset because we actually have an AWESOME team working with Christian right now.  That doesn’t come along everyday and I would so, So, SO hate to lose that!  So, yeah, busy working on this all, too.  And praying for the wisdom to know what is the right thing to do.

I did end up having a sinus infection.  Henceforth, I haven’t been able to think very clearly and haven’t posted anything recently.  Honestly, I’m still not thinking very clearly, but have been angered so here we go…

I received a call from one of Christian’s senior therapists this morning that punched me in the gut.  The state is now mandating that a child cannot be pulled out of school early for things such as therapy.  This includes kindergarten children, even though the state does NOT REQUIRE children of kindergarten-age to attend school.  Seriously, I was angry.  I wanted to march right in to somewhere and give someone a piece of my mind!  (Or punch ’em ‘cuz that would probably feel really good.)  So, who are the people hiding behind their desks making the decisions about the red tape this week??? 

Mr. (or Miss) Big Shot, you are already telling me that I need to have a minimum of 20 hours a week of therapy in my home to qualify for this program.  Right now, my son gets on a bus to leave for school at 7:10 in the morning.  To get him on the bus on time, I have to start waking him at 6am.  He is on the bus for a minimum of 75 minutes (one way).  He then has a busy day, moving from place to place, teacher to teacher, dealing with sensory issues all the while.  I do pick him up from school at 1:30 (2 on Wednesday so that he can go to music class).  We come home and he has therapy from 2-6 (2:30-6) every weekday.  We try to eat dinner as a family at 6:15.  Then my son has 2 hours to play and interact with us, as a family, until he needs to go to bed, so that we can repeat the possess over again the next day.  We do have 2-1/2 hours of therapy scheduled on Saturday mornings to be sure that we hit that precious 20/week mark.  Oh, and by the way, our son is 5.  Only 5!  We love him and want to spend time with him outside of  therapy.  To not pull him out early would push therapy start time back to 3:30 (or 4)pm.  Pushing their departure time back to 7:30-8pm at night.  Where is his time to just be 5 then???  Where is our time to just be a family then???  I suppose that we could give up our weekends, too.  Heaven-forbid that we would want to do something with all of us away from the house on a weekend afternoon.  (And we all know how “easy” it is to get community outings approved.) 

My son NEEDS time to be a kid.  He doesn’t need to burnout, either at school or at home, because he has too much placed on him at the age of 5!  We NEED time to be a family.  My son HAS feelings!  He NEEDS to be included!  He is not a castoff that we can just leave behind.  He will be with us come hell or high-water as WE are the ones who should be deciding what is best for him.

As I have been told, this is big talk right now.  If you do follow through on this, be prepared as I will not go down easily!  My son needs therapy.  He needs school.  He also needs to be 5.  He needs to be himself.  He needs to be a part of our family.  He needs to not be overwhelmed to the point of burnout.  And I will make sure that he gets what he needs.  

God, give me the strength to do so.