Thursday, November 29, 2012

Dawson's Progress and Gabriel is 20 months old!

Happy 20 months Gabriel! That number seems so much closer to 2! Yikes. He has really hit a growth spurt, both physically and vocally. He says so many things, and even a few short phrases. This morning he told me "welcome", which was rather adorable. I took some pictures at ECFE class. I realized I hadn't really been taking many pictures lately, which is unusual for me.
Gabriel loves the mesh swing, as did his brothers. It has always been a favorite thing to do.
 He is big on animals, even more than cars. He can say many animal names and sounds now.
 Cup on his head. He was trying so hard to get it up there, so I helped him
 Walking up and down the incline, over and over again. He's really good at it.
 He's such a goofball sometimes!
 Also adorable. This one reminds me of a pic I have of Tyler too.
 Playing with his trucks. He looks so big now!
 Love that adorable smile

Mr. Mischievious was taunting me after supper tonight. I was washing dishes and he was dancing on the table, laughing and making faces at me! Stinker.
Yesterday morning I went to put on his jeans and they were too tight. That was tough, as they were Tyler's jeans that he last wore. The thought of Gabriel passing up Tyler is just so weird, and it's another reminder that life is moving along without him. One amusing thing though is Tyler's socks. I started having Gabriel wear them, but they were just too Tyler, so I put them away. You wouldn't think a sock would have personality, but it does. So I put these socks away in a box. I found one in my laundry, I've found one on my floor in the morning, on the boy's floor, just random places. Today when I put the totes of clothes on their floor, I cleared out the entire floor, put the totes around the room, and when I put them away, there was another sock under one of them. Each time I find one, I put it in his box in the closet! Nobody goes in there either. Lately it has been a little reminder that just makes me smile.
Tyler in the jeans Gabriel just outgrew, which are the last jeans he wore.
Another since he's so cute. ;)
The cleanest spot in the place. I'm always nervous when I clean his spot, I keep thinking I'm going to drop something. His granite urn is really heavy!
We had Dawson's yearly IEP meeting this afternoon. I was excited to get the results from his evaluations. It was not very surprising in most areas, but it was overall pleasing to find he is average in most areas, superior in one area, and low in one area. He used to be low, and significantly low in many areas, so even just in the average zone is really awesome! Plus he was right at the line or a little above average in many of the areas, but still in the average section. His lowest area is verbal comprehension, what he is able to tell us and come up with on his own. His receptive comprehension, what he understands as we say it, was much higher and in the average range. His visual spacial was superior, which is numbers, pictures, matching, etc. Processing speed, which is his speed on giving answers and knowing things, was good also. She said it would've been higher than average if his Autism wasn't getting in the way. He kept wanting to count things on each page before giving answers, but he was amazingly fast once he got going, but the way the test is made, it starts the clock when they turn the page. :)
Overall, since the low and the superior areas balanced out, he scored average, in the 39th percentile for his age. We love average! I will take average over low any day. To be told my child is finally caught up with other kids his age is such a relief. He has a long ways to go, especially in areas of speech, which was in the 5th percentile, but he is gaining ground fast and wasn't even on the charts before. That was the Psycologist's evaluation.
His reading scores are in average range for his age, his writing is a bit behind, but when they talked about how they did the test, we realized it was a verbal comprehension problem with him and the test. He knows everything they were asking, he just didn't understand what was being asked of him, and they aren't allowed to word it differently or give hints.
His math scores were the highest, he scored above average! They are all very impressed with how he understands numbers, how high he can count and read numbers, how he can add, even in his head.
His speech evaluation showed what we knew, he doesn't often use pronouns, he refers to himself in 3rd person, and uses names, not "me, my, them, they, I", etc. It's something we've been working on, and he has really wanted to understand and use them, so I think it won't be long before it all clicks. When he says something, I just say it the right way, and he copies, and often he will say it right the next time with no prompting needed. :)  He struggles with pronunciation with the letters L, R, TH, S and Z, which is actually appropriate for Kindergarten, so they say this area is average! We have worked so hard on pronunciation over the summer and he has improved so much! A lot of it is just an oral maturity thing, so once he grows and matures a bit, it will come.
One of the best lines in the speech report - "his speech is intelligible to familiar and unfamiliar listeners"! This was not the case a couple years ago, and I remember being very surprised that others didn't understand him, because I did! So that one came as a hard hit to me at the time.
His narrative story-telling skills are still low, but have started to develop. He really had none before, and now he is saying an average of 3 words to describe a picture, and 6 after the story is read and they go back and have him say something about it.
Social skills there was a big discrepancy between home and school. Our eval of him was much higher than theirs, but that is a new environment with many kids, where home is more personal and he is more open with us. So that is common. At least we know he can, and he is getting better. He was observed sharing his art work with other kids, asking for help, offering help, and making sure people are ok if accidentally bumped into. These are all huge things! He used to completely ignore other kids. I really think having kids over most of the summer helped him so much. Just interaction with other kids, and I worked a lot with him on being respectful, taking turns, recognizing their emotions, etc. It's so nice to see the progress. They scored him around 50% ability, where we scored him at 73%.
The Autism Specialist says he still doesn't initiate play and needs heavy adult cues. He gets a bit overwhelmed sometimes in large group play, especially when it's not very organized. He doesn't do pretend play yet, though at home I have seen the beginning of some at times, but he has regressed recently and I haven't seen it for a while. His social skills seem quick to regress with his grieving process, as does his speech and behavior.
He has been rocking as a comfort thing during circle time, which replaced humming, so the less distracting thing has been appreciated. He also has been observed talking to the walls. He will often put his hand to his mouth and whisper something to someone. He has been doing this at home as well, in the bathroom and his bedroom. I fully believe it's a grieving thing and he is talking to Tyler throughout the day as his way of coping. So far it has not been disruptive or interfered with his work time, so nobody is going to bother him about it. His regression and actions are all showing that he is really having a hard time with things, and a child's body will actually revert back to where they were before their sibling died, to try getting a grasp of things.
We went to a workshop for grieving children on tuesday, and that was a bit insightful. It was more reassuring that we are already doing all the right things. They said regression is normal and temporary, and it's important to allow it to happen and allow them to work through it as they need to. So if he needs to do his obsessive elevator play in the closet, or watch Tyler's videos over and over, or talk to him in the bathroom, that is ok. As he ages, his understanding of life will continue to mature and he will handle things differently. I have also noticed it comes and goes in phases. He has gone a couple months without watching videos, and now for the last 2 months it has been a daily thing.
It's something that all of us will continue to work on, the ups and downs, the need to do certain things and feel certain ways, and the understanding that it is ok. The difference with Dawson is that understanding. I can tell myself that it's ok to be mad or sad today. Dawson is confused and wants so badly to be happy, and seems to take it personally and ends up acting out in frustration. In time that should get better. A lot of time. A couple people who are about 15 years past the death of their child, gave a more accurate description than the stages of grief, because it is not a neat line of feelings to check off the list, it is all over the place and back again. This is what the one parent said, which is about the same as the other had said too.
The first stage I could call "Initial Shock and Heavy Grieving". This stage lasts for 1-2 years; the first is more shock, the second is more actual grieving--and very likely will be more intense than the first because your mind is clearer to remember and grieve.

The second stage (going up thru years 5-6) I could call "Slogging Thru The Mud"; where things BEGIN to get better, but still hard. We Bereaved Parents, in addition to our grief, are subject to mental disorders like Major Depression and PTSD (PTSD affects over 90% of bereaved cancer parents). That's understandable; the trauma and shock of losing our child does all kinds of things to our brain chemistry, such as living with high levels of cortisol (the "fight-or-flight" brain chemical). It has its effects on parts of the brain involving mood, learning and memory.

The third stage (going up thru years 7-10) have been "The First Rays of Sunshine", which is when it seriously starts getting better--never "over it", more like "having gotten thru the worst of it".
I'm continually appreciative of everyone who has been understanding, who have allowed us to grieve as we need to without judgement, you are priceless people and we are so thankful to have you in our lives. :)

Sunday, November 25, 2012

Not an easy road

It has been a very long couple of months for us. Oct and Nov have been 2 of the hardest months we've had since Tyler died. Dawson tied the pumpkins and Halloween stuff to that time of the year, and he remembers a lot more than I realize sometimes. Last year, they had a Halloween party at the Autism Center, then that week was his last week of school. So this year he got horribly moody, acting out, screaming, crying, wetting the bed, hitting teachers, etc. Then he asked me if it was the last day of school and I realized that he was reliving last year, along with the rest of us. I couldn't help but think each day what we were doing last year. There were many dates that stuck out, many horrible events leading up to his death. I'd find myself subconsciously thinking about it, I'd have a bad feeling some days and after a while it would bug me too much, so I'd go to Caringbridge and find out what it was. It was always a big thing that happened.

Dawson got better after Halloween, but not me. I thought once we passed that dreaded day, Nov 2nd, that it would get better. It still continued though. I woke up the next morning with the same heaviness that I did last year. The week leading up to the funeral, I kept thinking about plans, did we do everything right for him? Did we make all the right choices and decisions? It really doesn't matter now, and I keep telling myself that, and honestly there's really nothing else that could've been done. The Dr had said that as well, yet we still wonder. They say this is normal.

From the time a baby is born, we keep track of all their firsts. Our family pic, them sitting up, smiling, etc. I never knew one day I would be thinking about all the lasts.

Our last family picture
The last time I held him
The last time I saw him
No parent should have to stand by helplessly as their child fights for 2 years, suffers, overcomes so many things, then still ends up dying. No parent should have to hold them as they gasp for air for 30 minutes, silently begging them to just stop. No parent should have to leave their child, after holding them for hours, feeling them get stiff and cold, and wondering how we ever got here, and why us?
The 1 year anniversary has passed, but now the holidays are here and I would just like to hibernate for a few months. Thanksgiving was tough, I was just not in the mood and certainly not feeling very thankful. Though I know we do have much to be thankful for, it is hard when the biggest thing at the moment is pain. They say the 2nd year is worse, because the numbness is gone and we are expected to move on with life somehow and we don't even know where to start. We do things, we go places, but still feeling stuck in place. Our kids are growing, all but one. It's hard wondering what he'd be like. I know many kids who are Tyler's age and they look so huge to me. They are talking, and have such cute personalities. What is looming the most, beyond that 1 year mark, and the holidays, is his birthday in February. 4 years old seems so big, so much more mature. It seems impossible that he would've been 4 already. He was only 2 1/2 when I saw him last, and the size of a 1 1/2 year old, so 4 seems huge! I've been trying to come up with ideas for the boys for Christmas, but I walk down the toy aisle and halfway down I see the toys I had planned for Tyler last Christmas, and by the end of the aisle, everything is all blurry again.

Thankfully I have a group on facebook that I created a year ago for other grieving parents who's child had cancer. I have a few other friends who have lost a child as well who have been very helpful. They have been an amazing support group and I honestly don't know how I'd be doing today if I didn't have them to tell me that all these things are normal feelings. I asked them if anyone else feels like Psycho-Grinch, because this is beyond Grinch, this is irrational and I feel like a crazy person half the time! I see posts on facebook about black friday, or pictures of all the toys they have bought for their kids and I just want to scream. Who cares! They are just objects, half that they will play with for a week and forget about. All I want is my little boy, or maybe even a sense of peace and ability to move on and enjoy life somehow.

Dawson made me smile the other day when I asked him what he wants for Christmas. He said "Go to Grandma's house!". I asked if he wants toys for Christmas and he said "um, no, just go to Grandma's house!". I'm glad someone has their priorities straight. :)  Our apartment hung wreaths last week, and he lit up and said "It's like Christmas!". He has been excited ever since. Since Thanksgiving there has been a lot of outside lights going up as well. We ate at Pizza Ranch last night for supper, and driving back in the dark he was so excited. It also snowed this week, started on Thanksgiving. I think the snowfall has hit me hard as well. Tyler loved watching the snow fall, and seeing the boys watch in excitement has been fun, but hard.

This week has been harder than most. I haven't gotten out of the house much, Dawson has been home most of the week and has been out of routine and constipated as well. He had a couple buns at Thanksgiving, plus some pie crust, and other snacks he got into during the week. The last couple days he has just been in a rage, but today he seems a bit better. That of course did not do good things for my mood either. I've been having horrible mood swings as well, which is mostly what led me to catch up on my blog, it helps, writing therapy. :)  So to catch up with pics from Oct and Nov...

 Dawson finished Horse Therapy. He loved it so much and I'm looking forward to the spring session! Here he was doing stretches. He has pretty good balance. He loves riding with his arms up.
 Gabriel is a little horse boy as well. He has attatched himself to this stuffed horse I made in middle school. He wakes up in the morning and the first thing I hear is "neiiiiiigh".
 We got our pictures taken with Dawson's horse. It's a fundraiser they do to help with the costs of maintaning the horses, since it's a fully volunteer-based program, but they do need to eat. He loved doing the photoshoot. Gabriel was a bit mad that he couldn't just ride the horse, but Dawson was very amused that his horse was being a bit uncooperative.
 Dawson was showing his excitement!
 Sonjay figured out there was hay under there. Dawson was giggling at her.
 She was also giving Dawson horse kisses. He found this hilarious and was giggling so hard. It really tickles.
 Still laughing at the horse
 Fun with props! This was totally Dawson. We were wrapping up, and we looked over to see Dawson had arranged the props into a nice hat for himself.
 Love this pic of the boys. It's one of the only ones where Gabriel was smiling.
 A nice smile! Those are hard to come by with him.

 In October, our friends came back for a week. I picked them up and we all surprised Dawson when he came home from school. He was so excited!
 We went to a pumpkin patch together. Getting them all to sit and look was tough, and Dawson was just not happy about being told to sit still, so he was making sure to express that for the camera!
 Gabriel really enjoyed the pumpkins
 Rain and Dawson. He was happy to have his friend back for a bit. He doesn't make friends easily, she's only the 2nd non-sibling child he's attached himself to. I did just hear there is a boy at school who he has been gravitating toward lately, and he happens to live at our apartment! I haven't seen him around, but hopefully by summer they can figure something out and play together!
 Gabriel loved the petting barn! They had sheep, goat, llama and a horse.

 We didn't do much for Halloween, but we did go to a local event earlier that week. They had a few animals to pet, some booths with candy, and a jumpolene.
 My puppy Gabriel. The costume lasted about 10 minutes though, the floppy hood was too annoying for him.
 The highlight of the afternoon was the jumpolene. He did this at the state fair as well, so he totally lit up when he saw this. He was waving at me everytime he got high up.
 We did a babysitting swap with a friend. They have a dog, so Gabriel was very excited about that.
 I love this face! Seriously, this child needs to stop looking so cute. Can I order about 2 more of these, please? ;)  So far he's been such an easy little guy to deal with. He sure has his moments, but they are nothing like Dawson's moments! So after the first 2, Gabriel is a piece of cake.
I love fall and it's pretty colors! The snow is pretty too, but it's so cold, and sloppy. I'm not a big winter person, it's too cold, cloudy and depressing.
 They were walking up and down the steps. It's so much more fun moving and not being told to sit still!
 Afterward we went to the dam to watch the "waterfall". He was impressed.
 My budding photographer took some pictures of Gabriel and I. He was getting chilly, so we were cuddling for a bit.
 I helped a friend move, and she gave us this adorable chair! It even reclines. Gabriel is very impressed and loves his little chair. Dawson sits in it sometimes too.
 Dawson today, he was playing with his mini pool table. Balls with colors and numbers. lots of different ways to sort and line them up!
I'm hoping to update this more often! I'm looking forward to getting back to a normal week of Dawson in school and me having some Mom stuff to go to. On Tuesday Dan and I are going to a parenting workshop about grieving children. Thursday is Dawson's yearly IEP meeting at school. On Friday I have a get-together with some of the most amazing ladies, my cancer moms group. Because even though some of our kids are gone, we will forever be in this group. The world of Childhood Cancer changes who you are, it changes your way of thinking and looking at the world, it changes how you parent, what you view as important, etc. Hopefully this will be a better week than the last. I liked this quote from a grieving page I found. It seems the whole weekend so far has been a big emotional release! Hopefully it will be less soon.
"You made it through Thanksgiving. The day has come and gone. Whether it was easier than you expected, harder (or both), the day is over. Often the day after has an emotional release. Rest today where you can. Be gracious to yourself, and tender. This is not an easy road."