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!