School and Communicating

We have finally gotten down our new routine. Five days a week of school for both kid, at two different schools has made me feel like a taxi driver but it's all going really well.karsen LOVES his new school. Not once has he cried when I drop him off, that's a first for him, and he actually cries when we have to leave when I pick him up, go figure. Ha. With the start of school, we had to have another IEP to get his communicative device added to it so he could start working on his AAC at school. We've gotten he ball really rolling. Karsen has taken off with it, we have fewer freak outs, though they still happen often. I can tell he is happy we can understand him better,maven if I have to tell him no to ice cream for breakfast and lunch, the fact that I respond to him with the reason why he can't have ice cream at that moment, you can tell he is a lot happier. He's starting to navigate beautifully through his ap. from two pages to different folders. It's quite amazing. We are still working on him communicating verbally, I am not giving up on him, but this is alleviating a lot of frustration on both sides. 

We seem to have lost yet another pair of glasses, I'm hoping they show up soon, I really don't want to fork out money for another pair. 

Things have been moving along pretty smoothly in the Williamson house. The break that Karter and Karsen have had from each other has been really good for both of them, they fight less and seem to play together more.  Don't get me wrong we still have lots of challenges but we are pulling through.

Busy but blessed. 

Celebration with a twinge of sadness

I haven't blogged in a while, we've been busy and I haven't had any major news to report. We are working on getting Karsen more support, which requires a lot of paper work and a lot of me being a squeaky wheel. Recently, I looked back at old videos of Karsen where he was saying "mama" and "baby" clear as day. It was over three years ago and through all of the appointments, injuries, ER trips, IEP's, therapies, EEG's, well... life as a special needs mom, I forgot there was ever a point where he was talking. It's raising a bit of a red flag. He's loosing skills, he only says one single word. It's something that needs to be brought up to his neurologist, I want answers, I need answers. We are also working on getting his insurance to supply a full time device for at home so he can effectively communicate at all times. Typically, the district will supply one but only during school hours, which is only 2.5 hours a day. That's not OK with us. That's where my handy squeaking comes in. We are also trying to get to the bottom of why we were ever discharged from alta when Karsen was three. (Alta is a non profit company through the state that supplies services for children with disabilities age three and up) We haven't really needed them so I haven't pushed to find out, but now that we are needing more support, more services they are the ones that should be helping.

Karsen's birthday is tomorrow, tomorrow people! This is his last day as a three year old. It's different this year. It's different having Karsen turn four. It hurts a little. Don't get me wrong, it's exciting for him to have a birthday, to be growing and enjoying the typical birthday traditions. There's this other side of his birthday. There's always been this gap, the gap of where typical peers are at and where Karsen is at. Each year that gap gets a little bigger and a little bigger. It's become very clear that he is not on the same page as other four year olds. Typical birthday parties are not a thing I am able to do for Karsen, large groups can overwhelm him, he doesn't like people singing to him, he doesn't understand what a birthday is or that he is turning another year older. As much as I can hold it together and always be real with myself about Karsen's struggles, it doesn't make these things any less painful. And with each birthday I wonder, at what year will people no longer find him "cute". He will always be cute, sweet, and snuggly to me, but at what point will other people look at him in a total different way? I can already see people making the gross face when Karsen drools, I already see kids point. I've witnessed people taking their kids over to another play structure because Karsen was there, believe it or not. The world is not all butterflies and daisies. I'd love to stay in bubble of peace and acceptance but sadly not everyone is in that same place. In the same breath, we've been touched my many people in our lives. Some have been complete strangers, compelled to ask questions about Karsen giving me the opportunity to teach, to educate. We've made friends with people we would have otherwise never met. Friends I've made that are dealing with the same exact situation. Karsen has made me so strong; strong for my kids, for my marriage. I have more compassion than I have ever had before, I have more patience (although I could use a lot more), I'm confident in my decisions, I am real, I am me and I know I was given Karsen intentionally. God chose ME to raise him, to protect him, to love him. I was given such a beautiful gift. The gift to see life in a completely different light, the gift of a tiny human so fragile that I've had the privilege to watch grow into a beautifully perfect child.
 
There is so much to celebrate, so much to be thankful for. So here's to you, Karsen buddy. The child that has forever changed me, forever changed my family and has made my heart bigger than I ever thought possible. Love you more each day. Happy fourth birthday buddy! Enjoy your day, your day filled with giggles, tickles, snuggles and ice cream.

Long Overdue

I fell off the of blogger world for a few months. Honestly I kept putting off updating for a while because it seemed like we were getting bad news after bad news with no real answers. I didn't want to post anything about "we aren't sure what's going on" and leaving everyone confused as much as we were. 

The last thing I blogged about was Karsen having to take a break from walking for a while after his fall. We went through some stuff in between then and now. First off was finding a school for Karsen. That was a huge stress for me. I found one school that looked promising. I really liked one of the teachers there and there was a huge outside play area that Karsen loved. We started taking Karsen to the afternoon program. On the first day I made sure to really talk to the two teachers about Karsen's needs and what he has a hard time with, transition specifically. I decided to stay that whole day. The second day I decided to leave just the last 30 minutes of the day. That day in particular the speech therapist was there, basically shadowed him the whole class. I could tell right off the bat they weren't a good mix, she gave him no warnings of transition and when trying to teach Karsen to say a toy with other kids she didn't to give him another toy in place of the one she took away. No warning, no talking about it, she wasn't my cup of tea. When I picked him up, the speech therapist told me how hard of a time he had with transitions (shocker....I told you this lady!) and how it was just a rough day for him, while another teacher told me that he was adjusting just like any other 3 year old would adjust and it's going to take him time but he did really great. (the response I would have expected from the special education teacher, not the head start teacher. This is a combined class by the way.) The third day I had to sign paperwork so I got to sit and watch Karsen while going over a few things with our case worker. At one point I saw Karsen being pulled around in a wagon with another little girl. He looked so happy. I decided that day I would leave the longest. (the class is only 2.5 hours). After over 30 minutes of paper work, I sat with Karsen for a few and snuck away to my car so he wouldn't freak out like normal. NEVER again will I do that. I sat in my car and watch for 10 minutes. What I saw broke my heart. Karsen getting up from the bubble table wondering like he was lost, clearly trying to find me. I then watched him sit down in a sand box near these two boys, those two boys looked at each other made a gross face at each other looked at Karsen again and ran away. I bawled my eyes out. Kids will be kids, but it gave me a glimpse of what Karsen is going to deal with for a very long time. I wish I could give him in a bubble forever but sadly that's not possible. When I gathered myself together and returned later to pick him up I talked to both teachers asking how he did. The head start preschool teacher, whom I loved, just told me how he really was doing great, still taking some time to adjust but it was only day three and she anticipated him doing much better next week even. After, Karsen and I started to walk out to the car while talking to the special education teacher. She told me how Karsen had a hard time with transitions (again.... already told you this, this is why he is there, to work on that), didn't want to sit at circle time and didn't like the other kids screaming in the room (um... not sure why this was aloud anyways). All in all, he really didn't do good and in her words exactly "You really should put him in a special ed preschool. He doesn't belong in an inclusion  class room." This is a SPECIAL EDUCATION teacher telling me this! I'm shocked and appalled that someone would say that to a mom, let alone a special education teacher that knows better. This is also a huge no no as far as legalities go. 

After talking to Karsen's case worker, I told her he would never go back there ( regardless if my child should be there or not, I am NOT sending him somewhere where the teachers don't have the patience to help him with his behavior with transition and sensory issues.). So, we looked at a few other schools. Ultimately landed us at one with a speech therapist that hit it off with Karsen immediately and had very small numbers. 8-10 kids to 3 teachers. That stress and drama is done and over with. We can now put it behind us. I pray that teacher doesn't talk to another parent like that again. He'll start there in the fall.

Karsen started doing these arm jerk things that looked close enough to his old IS seizures, it pushed me to getting him numerous EEG just to be safe. After two EEG's it was found that those arm jerks we not seizures, but in fact could be a side effect of his seizure meds. We haven't been happy with the side effects of them since they were making him loose his appetite which in turn caused him to loose weight. He also seems very drugged and out of it when on it. After much discussion with his neuro, we have decided to start weaning him off of his seizure meds.  If he starts having seizures again (regular seizures, not one every 6 months) then he'll go back on. The side effects are just too harsh on his tiny body. We are two weeks away from being off the meds completely. He's having a little bit of a hard time adjusting, mostly sleep issues, but otherwise he's doing great. 

It officially summer here and while I'd love to say we have lots of fun stuff planned we did most of our fun stuff in April and May. We went out to visit Kuper's family in Oklahoma (road tripped there, took three days to get there) and made so many amazing memories with them. The kids had a blast. We played outside almost the entire visit, this was before the crazy flood storm this hit. We are now in renovation mode, almost done, just in time to get our house listed. That's right, we are selling our house. After being out in Oklahoma, watching Karsen play on my in laws 10 acres of useable property. It was conformation we needed a house better fit for Karsen. He was so free and so happy. It's going to be a challenge to find a house that will fit all of our needs but thankfully we have time to really make sure it's the house we want. We are hoping for no stairs and flat, big fenced in yard. We also are needing a bigger house. Kuper and I have grown picky on houses so this will not be easy. 

For now, that's it. Lot's of big things happening in the Williamson house. Looking forward to our next adventure.

Here's some pictures from our Oklahoma adventures

Grand Canyon with these handsome men

 

 

 This kid loves horses