Social Struggles

Marshall received his Term 2 report cards for Kindergarten just before Spring Break back in March.  He gets one report card that his K teacher makes that is based on the same learning outcome expectations as the rest of the class, mainly academic based.  The second report card is a team one where his EA, teacher, and the special education coordinator create which is based on his IEP (Individualized Education Plan) goals that I outlined in my last post which were created back in fall. 

Marshall's K report card brought me to tears... in a good way!  He is meeting or exceeding in all areas academically, which just fills my heart with pride.  He works SO hard and SO deserves that glowing report card.  From a kid who entered K not knowing his alphabet or his letter sounds, to knowing how to write them, say them, sound them out... he is now above average in how quickly he has picked all of this up!!  He is on fire lately with his popcorn words, having completed the 30 required for K, and moving onto the second set (with many other classmates) and in 2 weeks has mastered all but 3 of them!!  I sit back and watch him sound out words and reading books... it is insane, and we all are so proud of him.

The report card on the IEP, although there is progress and we are grateful for that, is slower and he is still resting below meeting expectations in most areas.   Most of the goals on the IEP are social based, and are hard for all of us (adults not excluded), never mind for M who is restricted because of his unawareness that is a part of his autism.  I know many, many families who watch their kids struggle in this area, at all ages.  I want so badly for M to learn some of these skills at this age so that he is set up for better success later on.  So, after seeing his IEP, seeing challenges at home and with his cousins, as well as conflict and frustrations for him at school with his peers, I thought I needed to try and come up with a better plan.

At home in M's therapy with his BI's, there are social based programs.  Marshall is doing well in his therapy at home, and we are so thankful to have this extra daily support.  Because this program is 1-1, all of the social programs are more talking about what to do, or how to act, and in these scenarios, Marshall is giving all of the right answers and steps.  This is great, but in the live scenarios, this is not happening.  In his old program which was more social based with 1-1 but with 4-6 kids in a time slot, the reports I was getting from the staff was that Marshall was leading the kids in games, playing wonderfully and respectfully, and he was doing great socially.  So, because Marshall has come a long way, I questioned if he was aware that he was 'older' than these kids and was able to be bossy and organize play his way.  The maturity level was not there for most, and Marshall did well.  At school, among peers his age where maturity level is probably above his own, he struggles.

So, I started to talk with his BI's, as well as his BC, about other options for helping him socially.  It was suggested that I put him in a summer camp (weekly and daily)... Pivot Point hosts some, or even a program through our local Rec Centre, and if I wanted, the BI's could use their time to escort him during these camps.  Another idea was to use his intervention time to go to the public pool, or ice skating, or to the park.  These were great suggestions, however as I thought more about these options, I thought about myself and my opposite, my sister.  I go to the park and I avoid eye contact and socializing with people I don't know, it is unnatural.  lol. We created a park-like backyard so I can avoid having to go anywhere all together!!  My sister will go and seek out others to talk to, at the park, at Walmart... every outing is a social opportunity for her, and she is comfortable and thrives living like that.  Why should I expect Marshall to go with his BI to the Rec Centre, and to socialize with strangers??  I don't want to do it, and I don't feel like I am missing out on life.  What I need for him to feel comfortable doing, is gaining friends and learning how to deal with situations that arise among the kids in his life where friendship should be coming naturally, but isn't, and in environments where he already is plugged in.  My thought was, that the focus should be school and how to help him connect with his peers at school where he attends daily.

After mentioning my idea of integrating BI time into school time for social help, I had to get approval from the school on both having our 1 BI, Tara, come in 3 days a week, and also, allowing for Marshall to stay longer in his day.  Currently M goes part time, which looks like half days till noon.  When thinking about social opportunities, I realized that we kind of rob him of that with his schedule, so allowing him to stay and have lunch with his peers, including the longer lunch-recess outside for the 25 minutes, would (hopefully) make a big difference.  The school came back in full support, so last week we starting implementing it!!

On the days when BI Tara is here, Tuesdays, Wednesdays, and Fridays, she goes to Marshall's school after he eats lunch and heads outside with him.  Once recess is done, she drives M back to our home to finish up their session here where they can talk about scenarios that just happened, and how they could do them differently, or praise for good effort :)  At school currently, Tara is observing and also prompting M for when to jump into a pause in play, or how to ask others to play, or to even be aware of their existing play to see if he might be interested.  So far, it has been GREAT and I am so thankful that the school is on board, allowing us to make good use of our funding for a month and a half until it is cut down in June.  I am also thankful that the SpEd coordinator spoke with Tara already about meetings with her on how to best help M socially for next year!!  :D  Marshall LOVES having Tara at school, and LOVES driving in her car.  lol.  So far, I am happy to hear her observations, both because it helps us help him, and also, because Marshall is already doing a lot of great things in play naturally, even adjusting to changes and compromising a bit in how to play with others without prompt!!  Of course, most of the time he still needs guidance, and so we shall see how these next weeks go and what he can learn to do on his own in that time :)

"How a-dicilous!"

The title of this post is a common phrase that we hear Marshall using around here lately.  One thing that we could reflect on as being ridiculous at present might be:  I haven't blogged about Marshall since fall, and he is rounding up term 2 at school already! My last post was about my daughter's health journey, and I had triple the views on that one!!  wow!  I guess it is nice to have a story where there is a beginning, middle, and end :)  For Marshall's posts, I usually try to keep lists of all of things I want to blog about for when I finally sit down to type, however that has not happened for some reason, so you are getting a 'fly-by-the-seat-of-my-pants' post!  Whatever I can share within the next half an hour is all I am able to offer at this time!!

Marshall is doing well in Kindergarten!  From what I can tell and from what his first term report card read, he is able to keep up with his peers academically at this point which is fantastic!!  Rounding up term 2 I am excited to tell you that Marshall now knows his upper and lowercase letters, and almost all of the sounds!  He is reading sight words and has almost mastered his assigned 30 first words for the year... it is SO awesome listening to him READ!!  Just really never knew if that day would happen for him :)  He is getting pulled out of the classroom to work on his IEP goals with his EA.  The first term report card did not show much progress as the IEP is created near first report card time, so we will see how it is coming along in our report card in a couple of weeks!

Below I have listed Marshall's 7 IEP goals in general form.  These goals are created based on my input, the assessments and paperwork from M's past and current programs, as well as the observations in the classroom by both the teacher and the EA, and are support by the learning coordinator:

1. Will be able to initiate play
2. Be able to develop self-regulation skills
3. Will be able to stay on topic in discussion
4. Will improve language skills
5. Be able to retell a simple story
6. Will learn his alphabet- names/sounds
7. Will be able to achieve grade level outcomes with support/adaptations

** M was recently seen by the OT and a new goal that stemmed from that assessment is to work on his pencil grip.  Now, it's not perfect, but his writing is beautiful and that is why no one has been working on changing his grip up to this point.  From an OT's perspective, it seems Marshall's whole academic career will be destroyed if he does not hold his pencil correctly!  oh brother.  We will support trying and hope that M's penmanship is not jeopardized in the process!! haha.  The other day using a pencil grip with his BI here at home, he was so uncomfortable with it that he started using his left hand to grasp the top of the pencil to help him!  HA! Two hands... cause that's better than what he is currently doing?!?!  We shall see how it goes as so far he is not fighting it and apparently doing it correctly with the grip at school for limited periods of time :)

On top of the school support Marshall is receiving, he gets extra help daily from the BI therapy we have going on in our home (covered by Autism funding- what a blessing)...plus what I do with him myself.  He has so much support right now, that I do have a slight fear of whether or not he will be able to keep up next year with less BI/therapy support and with full days of school that are more academic (he will still have an EA in a shared scenario I am sure).  I had a chat with another parent recently that then led to me talking to M's teacher about next year, to which I was given a 'pretty sure' to him moving on to Grade 1 (of course they can't say for sure as it needs to be assessed by several people on all levels).  I would be surprised if they suggested holding him back... he could probably use the extra social support provided in Kindergarten with all of the play, but academically I think he would get bored.  Anyways, that will all be processed and talked about in May/June. 
Also at that time Marshall's funding will drop down to a third of what he has been getting due to him turning 6.  Two of my friends dropped the BI therapy and are using their boys' funding on a hired SLP (speech), and are finding it very successful thus far.  We will have to figure out where to focus Marshall's therapy and how we want to go about that as it will change from what we've been doing for 3 years.  More on that in the coming months as we figure out the direction we believe is the best fit for Marshall.

I am becoming more aware of just how much Marshall's sister and the cousins he is close to, adapt their play in order to keep the peace.  Generally I have felt like M does pretty well with other kids, but after spending time in the classroom, and attempting a play date here with a peer from school, I am seeing M's challenges plain and clear.  Now when I sit back and observe his play with his sister, as well as with his closest cousins, I am hearing how they either give in to his demands before he becomes angry or upset.  Also, and this is especially true for Devyn and I kinda knew this already, she has picked up on how we talk to Marshall, mainly, all of the pre-talk  that we do before anything and everything.  It is common for us to pull into a parking spot at the mall, turn off the engine, and for me to lay out the expectations of behaviour prior to going into the mall, as well as what will happen (we will leave/no reward afterwards) if he chooses not to follow 'the rules'.  He says ok and I know we will have success, and if we don't, he knows I will take away what I said I would do... and everyone is calm and happy (most of the time).  Devyn totally does this with Marshall too, and i'm noticing it more and more... and it's great, yet it is quite unhelpful in setting up scenarios of how to interact with typical children who don't listen, who don't warn, who grab, who... anything!!  haha.  It will be interesting to see when/how/if these lacking social skills will develop to being natural and easy for him.

We took the kids to Great Wolf Lodge over the Family Day weekend!  This was our second visit and we had even more fun this time round!  Last year, Marshall kept to the kiddie pool.  He did try out some of the slides, but came out crying at the end yelling, "dis is no fun at all!" lol.  THIS year, he told me pre-trip that he was going to be so brave and try the slides again.  And he did, and HE LOVED THEM!!!  I had hoped so as he now takes showers and can handle the water on his face a lot better (obviously, if he's taking showers!).  We did ALL of the slides multiple times and with joy!  It was awesome and I was so proud of him even just for trying!  We went with two other families and a total of 9 kids all around his age.  It was a blast and we will definitely head out to Seattle for the trip again!

I am totally out of time... but there's always more to say.  Until next time!

Epilepsy: A sister's medical journey

** One of the group presentations for my class on Health and Personal Care was on the topic of Epilepsy.  Our family has had some experience in this area with Marshall's sister Devyn, so with the support of my group I decided to write out the details that are her story, and to present it to the class.  I ended up with over 4 pages typed, so I condensed it to 2 for the presentation, and basically just stuck to the symptoms.  I spent many emotional hours typing and processing, re-living that scary time in our lives when seizures first initially appeared, so I thought I wouldn't let my hard work go to waste, but rather, take up some space in my Autism blog for a different journey, one which I hope will touch you emotionally and also bring some awareness; how seizures don't always look as you may have expected.

Epilepsy: Devyn’s Story

I’m sitting at home on a Thursday morning with my two kids, embracing all of the joy that comes from being home with my 3 months old son Marshall, and my almost 2 year old daughter Devyn.  I am in my living room and sitting in my rocking chair with my baby boy, when suddenly my daughter Devyn is standing beside me.  I look at her and she just stares back at me.  I ask her what she wants and she continues to stare with a blank expression on her face.  She has all the language in the world but doesn’t speak.  Then I see her swallowing funny and ask her if she is going to be sick.  She says nothing… but I wouldn’t want to say too much if I thought I was going to puke either.  I put Marshall down in his little chair and quickly run to the kitchen to get a bucket.  I’m saying things like, “honey don’t you feel well?” from where I am, and I’m thinking that it so sudden and strange for her to get sick when she’s had a good night’s sleep and a normal morning. 

With bucket in hand I head back to the living room.  There I find Devyn slumped down in a strange position and kind of leaning against the ottoman but sitting on the floor.  I rush over to her and keep asking her questions, “Here’s a bucket, are you going to get sick?  What’s the matter?  Don’t you feel well?”  She is not responding to me and I start to think something isn’t right. “Do you have a fever?  Do you feel hot?”  I’m touching her forehead and rubbing her back.  She is not responding and she is not moving her head to look at me, or shifting her body at all.  I decide to pick her up and am surprised at the weight of her… dead weight, she is not helping at all.  I’m starting to really panic now, and I can barely carry her but I take her to the bathroom where I have to bend down to dig through a box to find the thermometer, thinking that even though she doesn’t feel warm, maybe there are answers in that number.  Because I have to bend down, I almost drop her.  I have to hold up her head and when I look at her face again, her eyes are blinking too long, and then I see that when she opens them, her eyes are rolling back in her head.  God what is happening right now?  Rolling eyes is a seizure symptom, isn’t it?  But she’s not convulsing or moving, her limbs are lifeless.  “Devyn, honey, open your eyes.  Talk to me, what is happening?”  I don’t know what this is and I don’t know what to do.  Do I need to phone 911?  Is this one of those times?  Just snap out of it already! Stop it!  No, no, this is not my story, this is not Devyn’s story.  

I decide to forget the temperature check and struggle to carry her back to the living room, and back to my rocking chair.  I grab the phone.  Her eyes continue to roll and close for too long, and she is still dead weight in my arms.  I don’t know what to do and so I dial my husband’s number, he is at work just 5 minutes away.  As it’s ringing I know I’ve called the wrong number… meaning I know I should be on the phone with 911.  I don’t hang up though, knowing that Danny will keep calling back and worry if he can’t get through.  He answers the phone and I lose my composure and am crying and panicking… all I say is, “Something isn’t right with Devyn, I don’t know but I need to call 911.”  He says, “Call them, I’m coming home.”

I hang up with him and watch myself dial 9-1-1… I can’t believe this, I am calling 911 for my child.  This isn’t happening, this isn’t happening, wake up from this dream, from this nightmare.  The phone is ringing and Devyn’s eyes are blinking for longer periods than before.  I start saying, “Devyn open your eyes, are you sleepy?  Please don’t sleep right now, you NEED to stay awake.”  As I’m saying this I know that when I tell her ‘sleep’, I am thinking ‘die’.  Please don’t die.   

The 911 operator answers and asks me who to send and takes my resident info, and then asks me a bunch of questions.  “Is she breathing?” Yes.  “Are her lips blue?”  I look at Devyn… I don’t know, are they blue?  They look pretty normal, and now I can’t picture what normal is supposed to look like.  I tell her,"no, but she does look a little pale".  There is more talking about what has happened up to this point.  And then, I can hear them, the sirens, and there coming for my little girl, they’re coming because I can’t help her, and because I don’t know what is happening.  The operator tells me to lay Devyn on the ground and I do.  And what comes to my mind is, “Stay away from the light, God please don’t take her from me”, and I want to say it out loud, but I hold back and tell myself, NO, this is NOT what is happening right now.  I am not saying it.  But I wonder if it is.   Then Devyn stops blinking all over the place, and her eyes are still, and she is staring up at the ceiling calmly. 

The paramedics are here and they come inside our home… 5 huge men hovering over this little almost 2 year old girl.  Devyn starts to look in my direction, she is gaining control back, and the paramedic helps her to sit up.  She has come out of whatever that was.  She is quiet, but she is back.  They let me pick her up and sit her on my lap, and this time she is helping.  Praise the Lord.  They check her blood sugar and temperature, and they hear my recollection of the story.  They tell me based on what I have said, that she has had a seizure.  They tell me that her levels are normal, and how it is typical for kids this age to have fibril seizures (high fever), but Devyn doesn’t have a fever.  I ask about the lack of convulsing, and learn that there are many forms of seizures.  Devyn starts to cry a little as she comes to realize all of these people in the house.  They are GREAT with her though, and she knows I am right there.  They tell me that she should go in to be assessed at the hospital, and offer to take her by ambulance.  I feel like the ride might freak her out so I pass, and decide to take her in myself. 

Danny is home now, seeing Devyn as herself.  The paramedics leave, and I am so thankful that Marshall has been content to be ignored for this whole time… he may not have had a choice anyways.  I tell Danny the jest of it, and I can see in his reaction that he questions if I have over reacted.  Jerk.  Lol.

So he starts to get his clothes ready to take a shower, and then I look at Devyn in my lap and she is blinking funny again.  I try to talk to her but she isn’t responding.  They told me that she would be tired afterwards, but this weird blinking?  I call out to Danny saying, “She’s doing that thing with her eyes again!”  He comes over quickly and as soon as he sees her, he knows, and he apologizes for thinking I overreacted.  This time it is fast, and Devyn doesn’t lose her bodily control, she just blanks out for a bit.

Danny skips the shower and I quickly pack a few things for the hospital.  Abbotsford Regional Hospital has been open for 3 days… our first visit and for this reason.  We end up staying there for a few hours only to be transferred to Children’s Hospital in Vancouver.  So we went home to pack stuff for a possible overnight stay, since it was now nearing dinner time.  We would have to sit in emerge at Children’s.  The drive out is very silent.  Devyn is in and out of sleep which I’m thankful for since we were told not to feed her anything, and Danny and I are left alone with our own scary thoughts.  I prayed the whole way.  One scary episode could be totally random, but another small one shortly after?  I know that kids have multiple seizures and that a tumor is a possibility.  That’s where our heads were at. 

We arrive at Children’s and I get to tell the story over again for what must be the 10th time, and then again to the nurse when we are seen which wasn’t actually too long afterwards.  It is now around 8pm and Devyn is totally back to herself and not tired at all anymore.  She is walking around the little room, impressing the nurse with her drawing skills, and chatting up a storm with her.  The nurse lets us know that she will need to stay overnight to do one test in the morning, and then she gives Devyn a popsicle.  Danny and I learn a bit more from the nurse about seizure symptoms, and what to do if one happens, and also a bit about the different types of seizures.  The room is pretty relaxed now and we are not feeling unsettled or anything.  Danny decides to take Marshall home with him since only one parent can stay and we decide that it should be me.  The nurse leaves for a bit and we are waiting to see the doctor who will talk to us more about the testing tomorrow.  Devyn is now sitting on my lap and enjoying her popsicle.  A few minutes go by and I notice she stops licking and is just holding the stick in her hand and seemingly staring at it.  I can’t see her face since she in on my lap, and I don’t think much of it, but I ask, “are you all done honey?  Do you want me to throw it away?”  She just keeps staring at the popsicle and says nothing.  Then suddenly she vomits… all over herself and all over me.  And I think to myself, she hasn’t even eaten anything today how does she have anything to vomit?  And then she pukes again, and it is running down my legs and everywhere, and I remember that the nurse just told us that gagging or vomiting was a seizure symptom, so I send Danny out to get the nurse quickly.  Devyn pukes again, and I am standing with her now, more concerned about how wet I am than anything else.  I give up and sit back down with her as the nurse and Danny come rushing in.  The nurse takes one look at Devyn who is not crying in response to what has happened, who is not saying anything at all, and the nurse says, “This is not the same girl that was in here before, she just had another seizure.”

And then suddenly there was chaos in the room.  Both Danny and I were trying to remain calm, but freaking out on the inside.  Nurses were coming in and out of the small room, they said that they now needed to get her on an IV immediately with anti-seizure medication, and also with antibiotics for possible meningitis.  It was 9pm, Devyn was ready for bed, she was crying and they could not get the IV in, she was scared.    They tried and tried, and she was screaming in pain, and they had to wrap her in a blanket so she couldn’t move.  And that’s when Danny broke down and had to leave the room.  Great, they say that one parent loses it and one stands strong in these scenarios… I guess I know my role although I don’t know how I’m holding it together.  The ladies trying to do the IV give up and call in the specialized IV team who gets it in quickly.  It was brutal to witness, and I was so glad it was over. 

Danny took Marshall home, and Devyn and I went to her room in the Neurology ward.  We were in isolation as nothing had been ruled out yet… thankfully, because I had been exposed to her already, I did not have to mask up and could sleep in the room with her.  We stayed at Children’s Hospital for 4 days.  Devyn had an EEG (electrodes watching her brain waves), an MRI (pictures of the brain) as well as a Lumbar Puncture (spinal fluid) done.  All of the results came back clear, meaning they found nothing that caused the seizures.  We were relieved.  They assured me that this was good news, although it simply just felt without answers.  How can we try to fix something if nothing is wrong?  The Neurologist told us that it is typical for young children to have seizures for unknown reasons, and that often after two years of continued anti-seizure medication they wean them off, never to have one again.  They also told me that although Devyn is unable to respond to me, she can definitely hear me during a seizure, so I should speak calmly and words of comfort to her.  They told me that just because her seizures have been Complex Partial, that it doesn’t mean they will only be, and she could have any kind of seizure in the future.  I asked about the term Epilepsy, and the Dr said that it is simply a term used for someone who has had more than one seizure.  Devyn has epilepsy.  What is life going to look like for her?  So many unknowns.

We were discharged from the hospital with a written diagnosis for Devyn of Complex Partial Seizures.  She was on an easy medication, at a low dosage and with the only side effect being sleepiness, so we were to give it to her daily before bedtime, for 2 years.  A 3 month later EEG, followed by annual EEG’s were scheduled.  Two years later when Devyn was 4, she had had no seizures in that time frame on the medication, and her EEG hadn’t changed thus far.  We went in to see the Neurologist all ready to talk about the plan for weaning before Kindergarten, only to be told that in her recent EEG a spiked pattern has appeared.  Awesome.  Apparently many people have spiked patterns in their EEG, but don’t have seizures.  Of course, the likelihood for Devyn increases based on history.  So we decided to leave her dosage the same, which was too small for her weight actually, but to leave it another year to see if she would seize through it, at which point we would up the dosage.  That whole next year, no seizures.  She was doing well in all areas of kindergarten and home life, and there were no concerns.  So, we decided to try and wean her off her medication when she was 5 years old.  Strange things were happening at night, and since I only knew what seizures had looked like during the day, I was unsure of it.  After a few nights in a row though, I knew this wasn’t normal.  She would wake up often crying during the night, and not responding to me… however it was the middle of the night and I didn’t know if she was just tired.  One of the nights she didn’t wake up at all but then in the morning, she slept an hour longer and when she did wake up she was just sitting in her bed looking so exhausted.  The final straw for calling the Dr. was the night when I had already decided it was a seizure, told her it was ok and to lay back down, she was crying, but as soon as her head hit the pillow, she stopped and was instantly asleep.  It was freaky.  I called the Neurologist who told me that Devyn was definitely having seizures and to put her back on her full dose.  She hadn’t even come fully off of it up to this point.  I gave her the full dose the next night, and she slept peacefully through and woke up normal.

Fast forward to 2 years later to present day. In September Devyn turned 7 and entered grade 2.  No seizure activity at all over the past 2 years.  She had her annual EEG and the results showed much improvement, her best one yet since the spiked pattern appeared!!  So, in last month we tried to wean her off over a 3 week period.  There was one incident at school early on in the weaning process, where she ended up becoming confused and thought it was the end of the school day, so she grabbed her backpack and jacket and headed up to the office waiting for me.  The secretary saw her outside and went to get her, and of course she was now in tears.  Her teacher came and got her and they joked about how sometimes it’s funny when you make silly mistakes.  Being confused or tired after a seizure is common, so of course both the teacher and I weren’t sure if this was something, or pure coincidence.  Devyn was fine the rest of the school day, and because it was so strange, I figured we would see something else that would confirm that she had possibly had a small seizure that went unnoticed, and only saw the affects from.  When I asked her what happened, or if she felt weird or anything, she said no, it was just that she was busy doing something else and didn’t hear the teachers instructions about the class going to the French room.

            There has been nothing at all since then and for the rest of the weaning of the meds.  And today it has been about a month of her being off her medication completely, and NO SEIZURES!  She is ‘at risk’ for the next year, and we will continue to be extra cautious in the water, but as long as she doesn’t have a seizure, we will not be scheduled for future EEG’s or Neurologist appointments.  It’s been a 5 year journey that appears to have come to an end, but because seizures for Devyn have been unpredictable and without cause in the past, we really never know if she will seize again.  Either way, she is a happy, caring child, a great student, a true shining light, and a true blessing to her brother Marshall and to our family.

Kindergarten

The Preschool that Marshall attended for 2 years is an extension of the private school K-12 that he is now attending, so the transition from one to the other was smooth.  It was great to have a Team meeting in June with the new staff who would be working with M, and to have 2 preschool teachers who know M so well already there to contribute.  Marshall has the same Kindergarten teacher that his sister had 2 years ago (Mrs. H), and a shared aide whom we have already grown to love in this past month and a half (Mrs. P).

Marshall has been asking "how many sleeps to Kindergarten?" since Spring.  lol.  There was much excitement in those last months of preschool and M was ready for the big move.  Over summer holidays he asked a lot about K, his new teachers, and also friends.  The school was great and gave him a transition booklet (social story) that we could read to show where M had been, and where he was going, all with pictures. 

You may remember that we committed to part-time K, but in the full time classroom.  This option was offered to us by the school, and is offered to all kids with special needs as it offers more consistency in their day.  The part-time K is 2 full days per week, so the option of every day half day was much more appealing since we still have full funding for Marshall to have therapy for a couple of hours each day until June. 

We went in for the 'meet the teacher' time slot which was intended to be 15 minutes.  Well, we ended up going on a day where no other children were booked, and stayed for about an hour.  It was really great to chat with the teacher and the EA about different things we've been seeing, mainly behavior stuff over the summer.  I didn't mention that in the last post, but M was exhibiting some behaviors that I have not seen in years, and it was very frustrating.  There was one instance where I took him to the Dr. office and he was a total terror... yelling, banging the toys around, then even laying on the bench near someone else just repeatedly kicking his feet so the whole bench moved (the lady was not impressed).  I would talk sternly to M, but he would continue on... major flashbacks were happening and I didn't understand where this was coming from?  I know that summer is change and there is less structure, and that can often bring on behavior.  But in summers past I have not had issues with this, so I will say that some of the inconsistency happening at NSAP over the summer, with the new BI's and maybe he was getting away with more, was perhaps part of what was going on.  I am happy to say that since school has started, and therapy has changed, we have Marshall back :)

During this 1 hour meeting though, M wandered off to play in the classroom while the teacher and I chatted some more.  There were a few of these behavioral things that crept up where we had to step in during his play, so the teacher was grateful to see what I was referring to first hand. 

The first day of school and Marshall is stoked!!  We had a new backpack, lunch kit, some school supplies, and he picked a pair of shoes from the assortment that fits him to use as inside shoes.  Keep that last one in mind as there is a story brewing!!  We drove to school, parked the car, and walked to the classroom.  M lined up with all the other kids against the wall near the K door, and he even let me take a picture of him smiling :)  The bell rang, I helped him get settled a bit with changing shoes and hanging up all of his stuff, hugs and kisses, and then I left.  Leaving felt different than in preschool.  I'm not typically the mom who gets all emotional over 'my babies are growing up too fast', but that day, seeing my youngest who is a whopping FIVE years old leave me for what will be a minimum 13 year journey of school, I did feel a sense of  holy cow, my kids are in elementary school... how did that happen?  I am so happy though, that both M and his sister love school, love learning, and do well in that environment.  I don't think that the time has gone by so fast, as many mom's do.  I feel like these past years have been hard work, and more than anything, the timing is right for Marshall, and he is ready. 

The first week was half days for the whole class, so I pick M up at the same time as the other children get picked up.  All the kids came outside smiling and happy, and Marshall was one of them!  Mrs. P let me know that he had an awesome first day, and that she was so impressed with him.  YEAH!  Then I looked down at M's feet and noticed that he still had on his inside shoes, his Spiderman shoes that he picked out as inside shoes.  I decide to point it out and to make sure we do the exchange, after all, consistency and routine are important.  I also know that if we don't stick to the routine, that could lead to further issues down the line.  So, I make light of it still, joking that M forgot to change his shoes, and he is giggling and happy to follow me back into the classroom to change them. 

We get into the classroom and I am ahead of Marshall.  We go to his cubby and I pull out his home shoes to change them.  Marshall is next to me now, and he starts telling me that he doesn't want to change shoes.  I explain to him that we have to, and that it is a K rule to leave our inside shoes at school so they stay clean.  Now, after an explanation like this, it can really go either way, and I can't seem to predict which way it will go in any situation!!  Well, this time, M has taken his stance to fight me on this.  Great.  I continue to tell him, trying to change how I am telling him each time, that we need to change his shoes.  He is getting worked up, starting to get teary eyed, and also yelling at me. 

Come on Marshall, it's been such a great day, why won't you just change your shoes!  Why are we making this a big deal?  Just do it and let's get out of here.  You changed your shoes for 2 years in preschool, this is the routine you know.  I'm not ready for a fight, where is this coming from?!! 

This is all running through my head as his words, volume and tone, all escalade.  By this time, all the children have left and the EA who was standing by observing, is trying to chime in to help.  It's not working.  I'm sitting on the floor, knowing that as much as I want to just drop the whole exchange and get out of there, hopeful for better transition the next day, I have to follow through on what I said.  And at this point I know it is going to get ugly before it gets better.  *sigh.  Mrs. H has come over now and is using her strictest, no-nonsense tone, and gets to his level to tell him that she does not like the way he is speaking to me, and that it is disrespectful and rude.  I am hopeful that this tone will bring fear in M, and that he will apologize and smarten up, but it doesn't.  He starts to get kinda pushy and flailing his arms around, and I end up pulling him to the ground so he won't leave the room.  He is yelling back through tears at Mrs. H as well.  Now, I am so embarrassed, and wimpy me, I start to tear up.  Mrs. H notices and sends me out of the room to 'grab a class of water' for her.  I'm not sure if M has seen my tears, but I take him off me and leave, knowing he is in good hands, but just so upset about the whole thing.  I enter the hallway and burst into full crying... awesome.  I head to the bathroom to get a tissue, and I can hear my son screaming for me all the way down the hallway.  He is not giving up the fight, and I hear them using some force to retain him, which only makes him scream and cry louder.  Several teachers are peeking their heads out with concern on their faces, and closing their doors.  Two other EA's who are working in the hallway with other children, come running over to see why someone is screaming bloody murder, and then they see me, and they know, and I get an empathetic look, which just evokes more tears.  (oh goodness, writing this is making me cry right now!! jeepers!...i'm not on much sleep today.  lol)

I come back near the classroom after my bathroom break, and sit in the hallway.  Marshall has stopped screaming and crying, and I can hear that hiccupy, after-crying sound of catching your own breath.  Mrs. H opens the door to invite me back in, and let's me know that although they don't have the outside shoes on yet, the inside ones are off and in their cubby.  Marshall runs over to me and we all go sit at the table, he on my lap.  He immediately lifts up his shirt and asks me to "rub my back", which has become a bedtime routine, turned calming routine I guess.  We all sit there, exhausted, trying to gently convince M to put his outside shoes on so we can go home.  The shoes that he chose for insides, he now had changed his mind.  He wanted to take them home so badly, but I had to make him leave them there.  It wasn't what I wanted to do, but despite the meltdown, I offered to take him shopping for new shoes that afternoon, both as a way to get him to want to leave, and also a way to specifically designate new shoes for 'sleeping at school'.  He liked this idea, and the teachers supported it.  Marshall got up, smiled, told us to close our eyes, and then ran to hide in the room with his outside shoes, and I knew he was ready to put them on, and he did, and then surprised us.  Then he ran out the door and they laughed as I jumped up and said, 'I gotta take this opportunity!' and left without proper closure to the subject or proper goodbyes.  Half an hour... that's how long this 'episode' lasted from start to finish.  I was pooped. 

We went home, and on the car ride I talked to Marshall about his choice of behavior, and told him how it made me and the teachers upset when he yelled at us like that.  He said, "Sorry Mama" and then wanted to go back and say sorry to the teachers.  I could tell he was remorseful, and I wonder how much of that is choice for him when it becomes so escaladed?  Perhaps he gets to the breaking point and then beyond that, some of it is out of his own control?  We sure don't see too much of this type of behavior... the last time being when I blogged about it back in May in my "Pardon Me?" post.  This was similar to that time, and just so outside of Marshall's typical character that it makes me wonder what is all going on inside that mind of his!

Once home, I called NSAP to cancel his therapy, and started crying again to the BI on the phone!  lol, oh dear.  Both Marshall and I were so drained, and I wanted to take him shopping so we made sure to start Tuesday fresh.  Boy am I glad I did!!  We went to two stores and it was slim pickings for shoes, and then to find them in his size...  Back to school had taken everything!  We ended up having to pick up his sister and head to another mall where we did find some shoes to M's liking, and that fit him well.  Thank goodness! 

The next day I just knew, ok I was pretty sure, that the shoe issue was laid to rest and that the end of the day exchange would be successful.  Marshall does have things that trigger him that are repeated time and time again, but in these larger scenarios of serious meltdown, it often doesn't happen twice... at least not over the same issue, or in the same environment even.  At least that is the pattern that I am picking up on thus far.  I was actually in Vancouver that day for an appointment and had arranged for my Mom to pick M up.  We were all a bit nervous after the first day, but he did great with no issues!!  It worked out really well actually, because we got back into town an hour before school was out so my daughter and I headed back and I was able to chat with Mrs. H, Mrs. P, and the Special Ed Coordinator Mrs. E.  She had some concerns about the meltdown on the first day, and wanted to suggest/recommend that perhaps M is simply 'holding it together' for as long as he can, and then explodes at the end of the day, and so she wanted to create breaks in the day for him to go to the Sensory Room.  Honestly, I love my kids' school, and I love those I have worked with thus far in the Special Ed department, but I did not love this idea.  I am thankful that the school supports parents and acknowledges that we know our kid best.  I was actually a little taken aback by this suggestion so quickly, and felt like they were 'giving up' on M far too quickly.  After 2 years in preschool, the second year being 2.5 hours and now K being 3.5 hours, it didn't seem at all like M to say that he was trying so hard to hold it together.  He had had a super successful first day, minus the shoe thing, which was partly my fault in confusing him with shoes he had worn at home in the past.  I always feel awkward when I speak my opinions in these scenarios, but I felt it was important and so I did.  I asked them to put the idea of the Sensory Room on hold for now.  I said that I was not closed off to the idea, but I felt it wasn't necessary, and wanted to see M in the classroom setting as much as possible.  He had had a completely successful Tuesday, and I just knew that it would be ok from this point forward.  Now, I am not trying to knock the Special Ed lady.  I really respect her, and I value her suggestions and opinions, and I am thankful that she cared enough to meet with me and discuss some ideas for moving forward.  It shows that they care... both about me, about M, and about his success at school in an inclusive classroom.  I love that.  And I also love that I feel my own opinions are respected and honored.

We are now nearing the end of October, and the shoes have not been an issue AT ALL.  Marshall, being M, is very independent with going into the classroom and getting ready for class to start, and has 'banned' me from coming along with him.  That is ok!!  I am so proud of him.  I had the chance to volunteer in the classroom last week, and I was so happy to see that M isn't one of the kids that the teacher has to constantly redirect, or get attention from.  He is right in there and eager to learn!! 

A few weeks into the school year, I started to notice that unlike the week prior when I would come to pick M up at noon and see him amongst his peers during centre time, it was becoming a regular thing to be with the teacher doing helpful tasks.  Marshall loves to help, and he is good at it, and direct praise from adults is pretty awesome too :D  I brought this concern up with his EA, and she said that she had noticed he is near the teacher during free play times too, and that she would keep an eye on it.  I asked that they redirect him back to his peers as much as possible, and she said she would definitely do that.  Great!  I left the topic alone with M for the time being, and then spoke with Mrs.P the next day at pickup.  She let me know that she redirected him back to his peers many times, but he would say he didn't want to, or that he was tired, and was then asking when it was time to go home.  Hmmm.  Ok.  So in the car on the way home I start to talk to M about how important it is to play with friends at school, so that we can invite them over for play dates, so that he will get invited to birthday parties... that kind of stuff. 

Marshall gives me a big sigh and says: "But Mom, I want to fink (think) in my own mind".  
Me (interesting...): "You mean you want to play by yourself?" 
Marshall: "Yes... it makes me dizzy playing wif friends."
Me (wow!  nice description!): "Hmmm... well, that's why it is good to practice at school.  Don't you want to have friends like your sister and have them over to play?"
Marshall: "Yes... I have an idela... how about I do a pattern!"
Me: "A pattern?"
Marshall: "Yes!  First I play wif friends, then I play myself, play wif friends, play myself!"
Me (jaw dropped and hiding my shock): "That sounds like a really good way to start, great idea Marshall!"
Marshall: "OK I do dat tomorrow"

Can you believe this kid??!  I was so impressed with his ability to express how hard it is for him to play by telling me he felt dizzy, and then to come up with the IDELA to use a pattern for coping... wow!  As you can imagine, all of the staff involved that I told this to, was so impressed and shocked.  lol.  What GREAT insight M is giving us into understanding how to better help him!

In Marshall's 2 years of preschool and doing phonics, he has not picked up on the letters of the alphabet.  I have been working with him quite a bit, but he often tells me it is too hard for him and he can't learn them.  We are really trying to drill them in during M's therapy time now, and also at home and at school.  It's so interesting... you show him an 'a' and he will say it is for 'apple', but doesn't know what it the letter is called.  I have shown him a 'p' before, and he says 'puh-puh-puh' like the sound, but doesn't know the letter.  For the longest time he would call 's' a snake... of course, this is how I started teaching him, how many parents do and it worked with my daughter well and she dropped the associations over time.  Marshall has hung onto them.  He is now calling and 's' and 's', so it is coming along slowly!  His K teacher starts teaching 'popcorn words' which are the common sight words that 'pop' out at you often in kindergarten level reading.  I have been very curious to see how M does with these sight words, since learning the letters solo has been such a challenge for him. 

A few weeks ago, I was on youtube on our tv so I have to punch the letters in slowly with the remote.  M knew I was trying to spell the word 'fox' as I was looking for a music video that the kids enjoy, and so I punched in 'F', 'O', and then M says, "X comes next".  huh??  I stop and look over to him on the couch and proceed to ask his sister if she told him that, she said no.  I asked him how he knew that and he said "cause dat's how you spell it".  ha!!

The next day M brings me a piece of paper where he has spelled three words:

SEE (the e's are lowercase and backwards)
FOX
ZOO

I know he has been working on 'see' at school, but there is that 'fox' word again, and where did 'zoo' come from? 

Me: "Marshall, did you do this just now?"
Marshall: "Yes"
Me: "Did you copy this from somewhere?"
Marshall: "No, I do it myself!"

So I ask him what the words spell.  He tell me SEE, but when I point to FOX, he doesn't know.  Then I start to sound out the 'f' for a prompt, and he is still lost.  I say the word, and he gets excited that he spelt a word.  Fluke?  I don't think so. 

Me: "Marshall, how did you learn to spell fox?" 
Marshall: "Mom, I see a picture in my mind!" 

Then he proceeds to focus his eyes in one spot as he moves his finger in the air to spell out FOX in capital letters.  Interesting!!!  It was even more interesting to me because the question came up at M's IEP Meeting at the school as to if M explains things often to me without knowing what it's called... when I was asked this and actually thought about it, I did realize that yes, he does do that.  He will draw in the air with his finger, certain lines or circles and tell me "line an a circle... looks red, fuzzy"  that type of stuff.  So, now that I have been made aware of this, I realize that he does this ALL THE TIME.  And now it was just SO COOL to have him actually say the words, without me saying anything about it, that he knew it because he could see a picture in his mind.  WOW!!  I am telling you, it is amazing that Marshall is teaching us how he learns, and how he feels inside, and how helpful that is in teaching him and understanding what makes him tick!

They are starting the K Home Reading Program.  Simple books filled with popcorn words that I remember my daughter reading fluently the first day she brought it home.  Well, I tried with Marshall, this was on Monday, and he just got very angry at me, and was trying to tell me that "I need to repeat after you!!" instead of trying on his own.  It was getting frustrating for both of us, so we put it away and said we would try again tomorrow.  Marshall was upset by this but was ok.  All yesterday he told me that he wanted to practice at bedtime, and that he was going to try "really, really hard a follow (in)structions."  Awesome!  So last night at bed time, I wrote out the 6 popcorn words that they are working on in K, and we practiced those first.  He got 4 out of 6 on the first try!!  Then we opened his story called, "Making a Dinosaur" and tried to read it.  I showed him how the same words pop up on each page, and he followed along with his finger slowly (unlike the day before) and was actually reading the book!!!  I mean, it's simple like "Look at the dinosaur"  "Look at the tail"  and repetitive like that, but he was doing it!!  I was so proud, and he was so excited and proud of himself.  A few times he tried to squeeze the word "dinosaur's" into the sentence, but when I directed his eyes back to the words, I think it started to make sense to him when I told him that word was not on that page.  Then after he completed the book, we went over his 6 popcorn words again... and this time he got ALL 6 of them right!!  wahoo!!!  I am just so thrilled that he cares to try harder, to change his own pull towards bossing me around with how to do these things, to actually listening and learning.    We will see if this continues moving forward... he was mixing up some of the popcorn words today, and one stumped him that he has aced for weeks, but you could see he was really thinking, sorting his thoughts perhaps, to try and produce the correct word.  aww... I love him so much.  He asked me to tell his teachers about how proud I was of him today at school, and that is just what I did, and he just beamed from ear to ear.  Love it. 

Last Friday was Fall Leaves Day in Kindergarten.  Because it was a special day, I cancelled his therapy after the teacher supported M staying the whole day (without an aide in the afternoon).  I said I would volunteer to help out for that time frame so it all worked out.  We took all of the kids for a walk to a nearby park that was filled with leaves, and the kids brought rakes and cleared the pathways.  Marshall did great and was quite meticulous in his method of clearing (proud Grandpa i'm sure).  On the walk back, one boy in particular, who the EA said has not been one to typically flock to M, wanted to walk with him.  M was at the end of the flock with the aide and myself, and it was so sweet to see this boy constantly seeking out Marshall.  The problem?  Marshall was rejecting the invite.  boo!!  Both the EA and myself kept talking to M about this little boy, encouraging him to accept his invite to walk together.  Eventually, we got him to run ahead and walk with this friend which was great.  It was another picture of just how much avoidance there is for M at times.   We got back to class where the kids had hotdogs and cookies, and then all of the parents left and the kids went outside for lunch break.  I stayed to help, and did see that on the playground, 90% of the time M played completely independently, while all of the other children had small groups and were en  gaged with one another.  I know that he does have supervision on the playground, however I wonder if he is getting much guidance (or if that is even something they can do) in directing him to join others in play.  Might just have to volunteer over the lunch time in the future!  The bell goes and M does not follow the other kids back in, but one boy comes over to him and shouts, "Marshall Hiebert let's go!"  haha!  There are 2 Marshall's in his class, so all the kids know his last name, and Marshall now says he has a new name called "Marshall H."  lol. 

We go back to class and they do sharing, and then some coloring and math work.  I am assigned to the table of kids who needs extra help, and M is with me.  I have to send him back over to Mrs. H a few times because he wants to do his own instructions, and not follow mine, although they are Mrs. H's instructions.  lol.  Suddenly about an hour into work time, M starts to get upset and asking the teacher, "When is snickle-snack?".  This is what Mrs. H calls snack time.  She is explaining to him that we already had snack in the morning, but he thinks we are forgetting to have it.  Then a little while later he starts to get panicky and interrupting Mrs. H to tell her that we "agot (forgot) to do our journals!!"  She reminds him that we don't do journals every day, and that today we had a special day so we don't have time.  He starts to cry a bit and is frustrated.  Then he starts to tell (shout) Mrs. H, "Next time we need a do a day backwards."  She looked over at me and we realized that it seemed as though M started the day fresh after lunch break (I normally take him home at that time), and now this mixed up day was not following typical pattern.  Interesting.  And here I thought he would be so thrilled to stay the whole day, as often he is upset when I come to get him and wants to stay with the other kids.  I totally thought he would've been ok with this adjustment, and although he didn't have a big meltdown over it, you could see he was confused and frustrated with the change. 

Yesterday when I picked up Marshall, the kids were all working together during free play to make Noah's Ark, and his EA told me that M was totally involved and having great peer play!!  M was in charge of the animals :)  So great to hear.  It will be interesting to see how these next few months play out with his academic learning, as well as his social interaction with his peers.  We did have an IEP (Individual Education Plan) for Marshall and I hope that the goals we made for him are obtainable.  At report card time, he will get 2 report cards, one based on academics for K level, and one based off of his IEP goals.  Marshall has an adapted program, which means that he is at the same academic grade level as his peers, but may have some adaptations (such as extra time for completion, ore explanation, ipad use, less questions).  Other children on an IEP can have a modified program which would be for a child who is working below grade level in certain areas where the goal then, is to see progress started at the level they are at.  Any child with a diagnosis is on an IEP, and falls under either a modified or adapted program, and often just in specific subjects and not as a whole.  Right now Marshall's program is adapted, but they may shift into modified at some point down the line. 

And... that's a wrap!! 

Life Lately

Look at me now... BLOGGING!!!  I can't believe how time flies... the plan was to catch up on posts over the summer and before I went back to school this fall.  Not sure what happened there!! 

Marshall graduated from Preschool and was so proud at his graduation.  His teachers read aloud, "When Marshall grows up he was wants to be Spiderman".  Such ambition!!  lol.  He performed amazingly and even let me take some great pictures of him with his teachers and with the family :)

Our summer kicked off with a weeks vacation in Penticton where my parents rented a 5 bedroom house for our whole family (16 of us total).  Marshall loved the week spent with his cousins in the "wewwow house".  In case you missed that, the house was painted yellow. lol. Throughout the week Marshall told us that we needed to "buy dis house", and also that we needed to have a hot tub at home too.  The weather was amazing, and we spent time playing at the beach and waterpark which was fun. 
There was one day where there were two kids M's age playing nearby in the sand at the beach, and Marshall wandered over to them, and I just observed (holding my breath i'm sure).  Then to my surprise, I heard him ask, "I build your castle too?" And thankfully the little girl smiled and said yes :)  Marshall followed her lead a bit in digging a trench around the castle, and when the girls' shovel broke, he ran over to our stash and took an extra one back for her!!  Initiated play, following their lead, and sharing.  All HUGE things for Marshall man.  It was a heart warmer for sure. 
There was another day at the beach when I was the only adult supervising 4 kids (2 my own) and for some strange reason, Marshall took off down the shore line running.  I was watching him, waiting for him to stop or turn back, but he didn't!!  This isn't typical behavior for M anymore, so I waited way too long to start after him cause I really didn't think he'd keep going!!  Then as I started to run after him, abandoning the other 3 children (made them get out of the water), he stopped suddenly and started screaming crazy loud about how hot the sand was.  Of course, i'm running and trying to yell to him to walk two feet over and into the wet sand at the shoreline, but that was lost on him and he probably couldn't hear me anyways.  Goodness, we had quite the crowd of people to take that story home with them to talk about over dinner.  lol.
So, we had some amazing moments mixed in with some intense ones, but that's how we roll these days.  All in all, it was a great week!!  Marshall did break down crying as we packed up, he wanted to stay, but also, he got quite angry that we did not support him with his suggestion of, "I have an idela (idea), get some string, an put a hot tub on top da car an bring it home."
On the way home, we took a little detour and stopped in at my SIL's family cabin for dinner.  In the past M has been hesitant to put on a life jacket and get into the (unstable) boat.  This year, he was ALL IN!  Uncle and Daddy took sister and M out on the boat with fishing rods, and both kids came back grinning from ear to ear, Marshall with his first catch ever!!  Some of my fondest memories as a kid are fishing with my Dad, so it was great to see it trickle down into my own kids.  Now we just need to get Grandpa (my Dad) to semi-retire so there are opportunities to use his boat to get out on the river with the grandkids more (or ever. lol)!

In summer Marshall attended the same VBS (Vacation Bible School) at a local church (not our own) that he did last summer.  I volunteered as a Crew Leader again with a different group of kids.  It was a great week for M, and he was so excited about it and just embraced all of it!!  He remembered last summers VBS and I was a little concerned that he would be upset with things like the music being different, so I prepped him a lot about what would be the same, and what would be different, and he did great!!  Last year he only realized that I was in the same room as him for singing time about half way through the week, and although that threw him off a little, it was ok.  This year, he hunted for me and would wave to me with a big grin on his face when our paths crossed :)  At the finale, he was happy to get on the stage (front and center) to perform his songs... last year he wouldn't go on the stage at all with the other kids. 
Due to the successful week two years in a row, we decided to enroll both M and his sister into the Awana Program that the church runs once a week during the school year, it's a kids club.  I decided to volunteer to work in M's group of kids, so I am in a group with 6 boys.  Marshall is ok with me in this roll, but he has told me that I need to go somewhere else, lol, and sometimes there are issues with cuddling and other distracting behaviors that I know wouldn't happen with someone else.  We shall see how it plays out as the year goes.  So far the kids have attended 4 times, and are required to learn memory verses each week.  I am seeing how much of a struggle this is for M compared to the other boys his age.  He is really into it though, but often will take the first couple of words and then add things like, "for a Bible tells me so" or "love and the Lord".  lol.  It all sounds very poetic and is super sweet, but the 'bones' of the verses are getting somewhat lost.  Oh well, he loves it and he is trying, and I am happy with that!

Over summer I had the opportunity to attend a Language Builders group with Marshall for one week.  It was an 'into to K' type of group and because M has an open file at the FVCDC, we were invited to join.  It was run by an SLP (Speech Path) and his SLP in training.  The group ended up being only 3 kids, including Marshall.  Parents had to stay and be involved as well, so it was actually a nice sized group.  The other two children, one girl and one boy, were M's age.  I wasn't sure going in, if this was a group for kids with disabilities or not.  The main purpose of this week was to engage the kids in a story, one each day, but to tell it 3 different ways and the hope is that the kids are able to tell it back in sequence.  This is actually something that had been brought up as a struggle for Marshall a few months prior by one of his BI's.  M loves having me read to him, or his sister, and we do discuss the book as we read through it, stopping to contemplate and ask questions and such, and he has seemed involved.  I guess on his own though, he was not retelling stories at all, and just seemed lost with how to do that, or perhaps the story itself was not sinking in at all, i'm not sure.  The layout of the session was great, and I would recommend this program to anyone who is offered it!!  The first day they did The Three Little Pigs.  First they read the story from a book, second we sat at a table and looked at the materials they used (hay, brick, sticks), then the kids cut and glued the story in sequence on a long piece of paper, and lastly the kids got masks and they set up the room to act the story out.  The kids loved the last part, especially Marshall, who took on the roll of the wolf.

One of the children in the group had some obvious behaviors that to my untrained eye, looked as though they might fall on the autism spectrum.  He had speech delays, attention deficit, and just a lot of disruptive and sometimes aggressive behavior.  His mom was 'older', she said it often, how she had him when she was 36 and she just doesn't have the energy to deal with him.  The first day when his behavior was escalading, she blamed it on the fact that he had come from his Dad's over the weekend, and how he needs time to adjust.  As the week went on though, these behaviors seemed to be a part of him, and based on what I observed with the type of discipline (empty threats) Mom was using, and the constant excuses, it was obvious she was struggling, and would often admit that and ask questions for guidance.  She did say that they had had testing done over the past years but nothing has been confirmed... she also made a comment how older moms give their kids autism, and they looked at that but her son doesn't have it.  hmmm.  In these types of scenarios, I am often not so outspoken.  I try to assess and wait for the right time to speak up.  Marshall was behaving beautifully, and the only thing that might look like a challenge for him was the task of retelling the story, which he hummed and hawed over and often spoke up on unrelated topics. lol.  So, now it is Wednesday and towards the end of the class, I get a moment with this mom without an audience, and I decide to mention the program that has been on my heart to share with her, and that is the Triple P Parenting course that I took last year (and blogged about).  So I tell her about it, and she seems receptive.  I tell her that I took the Stepping Stones version for parents of kids with special needs, but i'm sure the typical one is just as good.  She looks at Marshall and back at me, confused, so I mention that he falls on the autism spectrum.  Here is what I posted on facebook the day it happened:

Well that was a first.... A Mom in Marshall's Language Builders Group today argued with me continuously that Marshall does NOT have Autism. She said she knows what it looks like, and he doesn't have it. I told her that he DOES without question, and is doing so well and has come so far... then she went off on how there are all these articles out there saying how they are diagnosing so many kids with ASD who don't have it. She told me they were wrong about Marshall. I said he is a different kid today than he was 2 years ago. Then she asked me if I feel like an outcast and unaccepted by other parents. Really? ouch. And NO, I don't!

Wow. That was a different take than the usual, "I would never have known, he is doing so awesome!" that I typically receive from strangers. Really looking forward to going back to the group again tomorrow :S lol.

I failed to mention it in this post, but she also called over the SLP to get him to agree with her opinion of Marshall and his misdiagnosis!  He simply said that kids on the spectrum who have the cognitive piece, and who have early intervention, can have so much success.  THANK YOU. 
So the next class day, I went in all vented and feeling validated by friends and family, but was planning to just keep quiet unless approached again by this lady.  Well, that day they had brought in another worker from the CDC that appeared to be there just for this mom and her son, to talk about options for more support or something.  About 20 minutes into the 2 hr session, I hear the mom's voice getting emotional and frustrated, her son is acting out and disrupting the whole class as mom is trying to speak with the worker.  Then suddenly mom gets up and leaves, heading towards her car.  She was crying, but it seemed she was just simply frustrated with life.  The worker came back to the group and gave a look to the SLP that to me said that the mom was being dramatic or overreacting.  The mom didn't drive away, she just sat in her car... the whole rest of the time.  The other mom, who was actually the little girls grandma and I did our best to support the little boy who was struggling with the group structure. 
This 'Nosey Unhelpful Person', as a friend called her, just checked out... and my heart went out to her.  There was no more communication with this lady, but I understood her frustration as I reflected back to the challenges that came with Marshall in years past.  You have to get up, stand strong, and be his mom to the best of your ability, EVERY MINUTE OF EVERY DAY.  And it can be exhausting, and it can burn you out... and for me it is a strong sense of faith that carries me through.  In that moment of awkwardness for this mom and her son who was left in the class, all I could do was pray for them.  As well, ask God for forgiveness in being angry and ticked off at her for her comments the day beforehand.  She is so lost, and I was suddenly overwhelmed with compassion for her... a stranger.  I hope that she seeks help, that she finds support for her and for her son, that is my prayer.  I choose to take her negative comments and reflect on what she is really saying, that Marshall is doing well, great in fact, and that all of the sweat, blood, and tears has paid off :)

Marshall's therapy over the past 2 years has taken place at the Next Step Autism Program which is run out of the FVCDC.  I have shared many stories over the years of blogging that promote this program, and will continue to recommend it for families who get an initial diagnosis.  The staff are committed and they care, and the other families that attend there are a great circle of support.  Over the past 6 months or so, I have started to question Marshall's place in this program.  Some of the changes, such as a ton of new staff along with more kids (up to 6 from 4) on a daily basis, were of concern to me.  Over summer I became growingly concerned as it seemed M was often getting paired up with the new BI's, and I was told that because he is so easy, that this made the most sense.  There were a few occasions where, upon mentioning something that I was told was happening in M's program, that I got a 'deer in the headlights' kind of look from the new BI, which was not cool, and had an experienced BI who was listening step in to speak for them.  I am ok with M being put with the new staff as long as his therapy and consistency of his programs isn't affected.  Over summer, I started to question whether or not, in a sense, Marshall has outgrown NSAP.  In Spring I had spoken with the Behaviour Consultant and flat out asked her this question, her response, "Marshall is a great example to all of the other kids."  ha!  I said, "You're welcome!!"  I should've started looking at a move after that conversation, but I didn't. 
At NSAP they have playtime, circle time, and snack time, as well as work (table) time.  And all of these things were great for Marshall in the beginning when he needed to learn how to behave and what was expected in each setting, but at this point, Marshall does well in all of those scenarios.  I really felt that he would benefit with more direct instruction, with consistent BI's, and with less distraction of the other kids around.  He was coming home almost daily telling me stories of who threw their food, or who cried, or what the teachers said when someone did something bad (fyi, it was all appropriate!! haha).  I get it, Marshall was one of those kids.  But he is a different kid today, a lot more observant and socially appropriate, and maybe we needed to make a change. 

One day I picked M up and he came out of the teaching room in tears with two of the BI's.  The senior BI was kinda smiling saying that M was upset because he had to miss snack today... and then proceeded to tell me that the reason for missing snack was because they are using him to train the new staff.  She also told me that Marshall was getting upset because when training, the new staff was guiding M's hand to the appropriate answers.  ????  what?  ok, I was not pleased to hear this, and maybe my face showed it because very quickly she added, "don't worry, we're still doing his programs during this." I like this BI and consider her a friend, but I was not ok with this scenario.  Marshall is way beyond guided hands and I can imagine that he was extremely frustrated by this, as well as confused possibly.  I did not say anything on the spot, but I did voice my concerns to the BC who agreed that I should've; one, been asked if it was ok to use M for training, and two, that it would've been more appropriate to offer M free time to come in to do so.  I am glad I brought it up, and my thoughts were exactly the same as the BC.  I had this conversation with the BC shortly after emailing a one months notice to leave the program.  The training stuff was kind of the turning point, where my thoughts about changing therapy for M were confirmed.  The BC who I really respect, responded with affirmation that M would do better in a different environment where more academic therapy is focused on.  On M's last day, we were both crying by the time we got to the car... I would've been ok, but the 4 staff members who were there, who we've grown to love and who have been a part of this amazing journey, all stood by the door and waved their sad goodbyes.  *sigh.  They love Marshall too, and I know they will miss him... how can they not?!  We miss them.

So, where are we now, you ask?  I learned from a friend, about another local program that does a similar 'all inclusive' program, which basically means they take care of all of the paperwork (which keeps me sane), called Pivot Point.  The main attractions for me to hire them are that they come into your home (that would never have worked 2 years ago) for intervention, that the same 2 BI's are working with M weekly, and that they only charge for services used.  At NSAP, if they called to cancel your child because they were short staff, or you take a week off for vacation, they still get paid... so really, they use up ALL of the $22,000 gov't funding.  I had to fill out tons of paperwork in starting this new program.  PP really wants to know what I think is important for Marshall to learn, and I think I know enough and am involved enough to give good direction.  He is still assessed by their BC who supports my concerns, and so far things have been going great!  Marshall likes his new BI's, and I like having the same 2 people to talk to about what's going on with his intervention.  Oh!  Another thing that I LOVE about PP is that I get a daily write up of what they have worked on that day, and how it went.  My most favourite part is that I get to hear what is going on for the whole 1.5 hours that they are here, and it is great for me implementing learning in a similar way.  A team is always stronger, and I like that I feel a part of this one already.  We recently finished our renovations of closing in our carport for inside space... "da teacher room" as Marshall calls it.  It is great that they can have their own space for learning, and I don't have to disappear into a bedroom!!

I was planning to touch on Kindergarten, but I think I will leave that for another post, another day :)  Thanks for checking in!

Pardon me?!?

We don't have a lot of things with Marshall.  He is generally pretty laid back.  We know the triggers and do our best to prep him for upcoming changes or new events which helps.  There are some things that for whatever reason Marshall has in his head, need to happen his way.  Lately he has really been challenging us with behaviour following a "no, not now" or a "this is the way we are doing it". 

A few months back we started to have a fight every time we left NSAP with Marshall's refusal to say "bye" to his teachers.  Of course, because he knew we were all requiring him to use his manners and say goodbye, he would bolt the instant he was out the door and when I'd hold him back there'd be a lovely screaming fit.  We worked our way into great eye contact goodbyes by me using a reward system at home.  I shared what we were using for his reward with a few of M's BI's as well as with Janel, and everyone's reactions were similar.  With a raised eyebrow they'd say, "A preschool learning book?  Are you serious?" haha.  YES!  Oh how I loved using a learning reward that Marshall deemed fun :)  When I'd share with his teachers that he is actually doing the work in them (writing, counting, drawing, shapes, etc) and doing it fairly well with some assistance, most of them were quite surprised!  I guess for a lot of kids on the spectrum, book type learning outside of school is not a desired 'free time' activity.  I'll take it ;)

Following Marshall's proper goodbyes he would turn to me and ask, "Do my book now?"  And I would tell him that yes, we would work on it when we got home.  He was happy.  I was happy.  After a couple of weeks, there were a few times where we weren't able to work on the book after school, or we'd forget once we got home.  Marshall didn't seem to mind and wouldn't break down over forgetting or anything.  Eventually we got to a point where he stopped asking about working in his book, yet continued to say proper goodbyes.... 'the phase out' was beautifully executed and goodbyes had become very natural. Win!

It's been several weeks since this goodbye business was deemed mastered (at least in my books).  And only now that I've been reflecting when this 'new thing' started am I realizing that it started very closely following mastering goodbyes.  This seems to happen a lot in different areas.  I have heard other moms as well as teachers within my ASD community say the same thing... they finally stop doing thing #1 and now they've started doing thing #2.  I think that a lot of kids do replacement behaviour stuff, but it seems to be much stronger in kids with Autism.  We are embracing this with joy ;)

What's the new thing, you ask?  It's a nothing thing, in my opinion, but Marshall HAS to have control over what it looks like... for reasons unknown to me, and I am not backing down!  He wants me to carry his backpack.  That's it.  Marshall is happy to carry his backpack to and from preschool.  Marshall is happy to carry his backpack into Next Step.  Marshall is not happy to carry his backpack after NS and back to the car.  Huh??  It wasn't like it was a huge deal one day, it has been progressing over the past several weeks.

It started casually with him just giving me his backpack after his goodbyes, or half-asking, and us walking out together.  I wasn't bothered by this at first, but then he started kinda chucking it at me and running off... didn't love that.  At first this was actually only happening once we left the school and were walking across the basketball courts.  I started holding him from running off and telling him that he needed to ask me if he wanted me to carry it for him.  He loved this idea... not!  He would continue throw it at me or just drop it and then run off.  So my next move was to walk past it and follow him to the car.  He did not love my move.  He would start screaming and yelling at me and even crying about the backpack that had been abandoned.  Eventually he would ask me nicely or just carry it himself.  It was really fun putting on our little show day after day for all of the parents from the regular school who are waiting for their children to come out.  lol. 

Marshall is a smart kid.  After many days of this drama in the parking lot, he unexpectedly took it inside.  Knowing that dropping his backpack and running off was not a cue for me to pick it up and carry it for him, he slung it onto my arm during a conversation I was having with one of his teachers.  I didn't even register his sneaky ways until I was halfway across the parking lot, watching him run ahead of me, with this bag I 'accepted' on my arm.  lol.  The thing is, I don't mind holding his backpack for him at all, I just know that he has more than enough words to ask me to carry it, and I will accept nothing less than a simple request.  It's not hard for him to ask, he is simply wanting control and being ridiculously stubborn... to me this is more about that than not wanting to carry it himself.  Therefore, it is a battle I have chosen to pick ... and to 'fight'!!! haha.

This past Monday was 'Challenge Accepted' day.  lol.  In retrospect, I should've spent extra time talking to Marshall about what was happening after school prior to going to school.  Each day leading up to it we would have our issue and I would talk to him in the moment or in the car afterwards, and then forget about it until I went to pick him up and we were in it again.  You'd think I'd have learned by now.  lol. Oh well, continuing on...

So now I am aware of Marshall and his backpack, and more aware of my hands/arms and where they are.  Marshall comes out of class, says goodbye to his teacher, then comes over to me to sling his backpack onto me... except he can't find any loose limbs!  hahaha!!  He is not impressed, obviously.  He starts getting really mad... he is yelling, jumping, crying, and being super dramatic.  I am standing there embarrassed by his behaviour, but remaining calm and cool.  I repeat myself again and again, "You need to ask me with your words."  He tries to get away with a whining "please" but at this point that is not cutting it for me.  He then demands with all of the wonderful words he has that "I no using my words a you hold my backpack!!"  I smile and shake my head no as he continues to act out with yelling and trying to rip my arms down.  I don't cave, but after a fairly short while (like a minute or two) Marshall does and he asks me to hold his backpack for him.  Then I thank him for asking me nicely and we walk to the car... I am happy and he is angry after not getting his way. lol.
I was hopeful that it ended there, that me standing my ground would defeat the attempted victory for Marshall and that he wouldn't try again.  I was very wrong. 

Almost the exact same thing happened the following day with the same result... 2-0 Mom! woop woop!!  The staff at NSAP was aware of what was happening in the hallway, and as disruptive as it was, they just smiled and nodded...hopefully admiring my efforts somewhat, or perhaps thinking I was a terrible mother, who knows!!  lol.  I'm so past worrying about what others may be thinking, thank goodness.

Wednesday, day three... with two 'wins' in a row, I thought the message was clear.  Marshall picks things up pretty quickly and I figured we'd see less of a fight today.  Janel was speaking to me about Marshall's yearly assessment when he came out of the classroom.  I was hopeful to not see the same behaviour, especially because I was talking to Janel and that made the scenario different already.  Well...  It was bad.  Basically the same routine as the days past happened, except this time was louder and multiplied.  He jumped, he ripped at my arms, he screamed at me and screamed with his tongue sticking out.  Janel and I had just been talking about how i'd mentioned to one of the staff that we'd be seeing more tantrums and behaviours at home that all seemed to be control based.  Well, Marshall put on a show for her.  Honestly, I was shocked at how extreme this was... and then it got worse.  He started punching me and ramming me... what?  Marshall has never been violent before towards anyone, ever.  What the heck was going on here?!  Not cool.  Janel stood by (which always helps when you're dealing with a scenario such as this, an audience!) while I grabbed Marshall's fists and told him to stop hitting me.  I told him he needed to ask me with words if he wanted me to hold his backpack.  He kept hitting me.  I told Janel that this was super extreme and above anything he is ever doing at home.  She found that interesting and wondered if he was fighting harder because she was standing right there.  Maybe.  But regardless this was crazy, I couldn't believe it was lasting this long and that Marshall was so angry with me!  When will this end?  Then something new started happening... with a face full of anger and tears streaming down, tugging on my arms, Marshall started using his words alright... and even as I write this I still can't believe the things he started saying to me. :(

Marshall (with such anger and frustration):
"I a cut your eyes!"
"I a bam you all over everyfing!"
"I (s)mash your face a ground!"

I just stood there, shocked.  Where in the world would he learn this kind of language?  This is so mean and disturbing actually.  This is not coming from my son... and over a backpack?  Finally I bent down and held his face telling him it was not ok to talk like that to me or to anyone, and he stopped.  I told Janel that I had never heard him talk like that and had no idea where it was coming from.  All she said was that he must have heard other kids saying it.  Really?? I guess... but where?  What kids?  I am still so confused and clueless as to where he would have learned such things.  So, Janel left us after 10 long minutes (at least that's what it felt like) of this craziness, and I got on the ground to try and calm my son down.  He calmed down after a bit, but refused to talk about his backpack.  Then he climbed onto my lap and we sat there for a bit... he let me kiss his cheeks and wipe his tears.  I told him I loved him. We were both exhausted.  Then he stood up, picked up his backpack, and dramatically but willingly dragged it on the ground back to the car. lol. 

We got into the car, buckled up, and I decided to talk have a talk with my son even though we were already late to pick up his sister. 
It was not ok that he was screaming like that.  It was not ok that he chose not to use his words.  It was not ok that he was hitting me.  It was not ok that he said such mean things that made me sad. 
He said, "Ok Mommy, I no do dat next time". 
I said, "Good".  
And that was that. 
Daddy talked to Marshall that evening about his behaviour in a calm and gentle way, and Marshall seemed to register that it was not an acceptable way to act.

Thursday before we left for school I sat down and had a short conversation with Marshall again about his backpack and after school.  I told him that he had two choices: 
1. Ask Mommy nicely to hold it. 
2.  Carry your backpack yourself. 
I reminded him that there would be no screaming, crying, or hitting (I left out the mean words part as I thought a reminder maybe wouldn't be beneficial since it is generally not typical behaviour for him... also I am trying to pretend that part didn't actually happen).  He stated that he wasn't going to do that again.  We went to school.  When class was over Marshall came out and stood next to me.  He lifted his backpack to me and said, "Please?"  I said, "Please what?" He replied sheepishly, "Please carry my backpack?"  Of course I smiled and said, "Yes, thank you for asking me so nicely".  And off we went to the car :)

Today is Friday.  And this story was supposed to be a quick entry and once again has turned into a novel!!  Today Marshall came out of his class carrying his own backpack.  He said hi to me, told me he had a good day, said goodbye to his teacher.  We didn't talk about his backpack.  We walked towards the door and I crunched down so we could share an umbrella back to our car.  It was a wonderful walk, even in the rain :D

Is this the end of the backpack fight?  Who knows.  I'm always hopeful.  But as seems to be the norm, if it is the end, something else will creep up to take it's place in the world Marshall tries so hard to control.  Ironically, or rather, purposefully, God has been teaching me a lot about control lately.  About how Marshall, how all of my kids, are His before they are mine.  About how I need to acknowledge that God is in control of my life, to trust in Him and have peace in that.  Marshall will have many lessons learned in his lifetime, and I look forward to a day when he is aware of the peace he will be granted when he gives up control to Jesus. <3

"Life isn't about waiting for the storms to pass,
it's about learning to dance in the rain."