Families are Love

Friday, February 19, 2010

I know it's been quite awhile now. It's been over a year... in fact a year and one month since Josh passed away. Life has kept moving forward and life has taken our little family in directions that we hadn't anticipated. We still miss him terribly some days. And still the Lord blesses our family with comfort and little mercies that I haven't know I've needed until they've come. Like when I'm sleeping and I just get to feel like he's there or like I can hear his little feet crossing the kitchen. It's been hard not knowing what he's doing... I have my ideas, but not being able to see him doing them is hard. I imagine that Josh is playing music... specifically the piano. For being as young as he was, he had a great sense of rhythm and always seemed to have some type of beat going with whatever he was doing. It's told to us that we take our personalities and traits with us when we pass on. That makes me wonder even more... Josh was such a stubborn little one. He had his set way of doing things and that was that... no questions!

Just some random news

We've been keeping busy with life like every one else and we are thoroughly enjoying life!
Steve is enjoying work and loves learning more about the financial industry, he's hoping to start studying for his investment license soon, but we will see how time works out and flies! He's still the Scout Master in our ward and enjoys working with the few boys that are still in the deacons quorum. Steve went to Washington for work with his dad at the beginning of February and sounds like they had a great time. It was his dad, Larry, himself, and his cousin, Graig. They seemed to have more fun than work and it sounds like they will have to make one more trip in the next few weeks to finish the job. Steve keeps busy and thankfully he's been able to balance time for the family and work and scouts. Even when it means that Mike goes to a meeting with him.... Mike loves it!!!

Mike as happy as all get out after going to work with dad. He came home with some snickers candy from a real millionaire. He was so excited even though he had no idea what that meant. Excuse the woman at the side... it was still during the puking stage. Doesn't he look handsome?

below: Mike's newcast

Mike has been busy with preschool and having an imagination as huge as the sky it seems! The other day he gave me a news report about his toys and even had commercial breaks... he would break by giving the signature local news line... "local people, local news." He is such fun with the things he comes up with! He loves watching the Olympics and enjoyed the little he was able to stay awake for of the opening ceremony... which were wonderful! He even will go around the house lately ice skating, but couldn't quite figure out why he wasn't able to spin on the ground like they could. Preschool has definitely been busy lately it seems, but Mike really enjoys it and especially loves the new aide, whom he flirts with ALL the time... she's in our ward. Mike loves singing especially the days of the week song that sounds like the Adam's family song. We let him watch part of the Star Wars: Episode One a couple of weeks back and now he uses a k'nex rod to fight "the ducks" all over the house (He thought that the droids looked a lot like ducks), it's been a ton of fun especially when Steve gets in the fray :)

Mike is doing well with recognizing sight words and will probably be a kid that memorizes everything. He has that elated look on his face when he realizes that he has memorized something... like a new primary song, a new word, and the words to his favorite books.
I think that must be the most wonderful feeling... when you get to see your child really intrigued and happy with what they've done!

We are continuously working on SPD lately and increasing Mike's fine motor skills with "homework." Mike has loved homework lately and that's made the extra work easier. Today's homework was to make snowballs. Making "snowballs" not only strengthens small muscles in the hand, but also wakes them up to get them ready to work (writing, coloring, cutting). We scrunched up as many snowballs out of paper as we could and then had a great indoors family snowball fight! It was a lot of fun!!! Something I'm sure we will keep doing just for kicks!

snowball fight! Mike and Steve with their game faces on! :)

I'm starting to throw myself back into learning as much as I can about SPD and other "disabilities" (lack of a better word) that hold kid back from learning, and doing the best that they can. It's an interesting adventure. I've been cross referencing some of the challenges Mike has with activities that can help with those things. I just want to know all that I can right now. It's been fun e-mailing OT's and talking to the speech therapists and other people who are involved with helping these kids. A little frustrating because it seems that too often hands are tied by rules, or parents don't have the time or resources to help, or the kid is just missed and labeled as a bad kid. What an unfair disadvantage! I am very thankful to have the time, to have the resources, and the spit fire to stand my ground when my mother's instinct tells me what's going on with my child... wish I had a little more of that to not doubt myself so much :)
Some of the things we are starting to try with Mike is for his vestibular system... inner ear. He enjoys it a lot and so does Steve. It involves standing on his head for a few minutes, swinging around, spinning, and tumbling. I still need to get some more info. and tips from our OT, but it's seeming to help him come back to calm attention when he needs it. He really likes it when he gets to stand on his head and read a book! What a wonderful adventure learning is!!!

Wednesday, February 10, 2010

Wow two in one day! I actually just thought these were fun to share!

Sensory Processing Disorder

Today I had a great conversation with a friend who has challenges in common with me and it was great to remember that there are other people around who have to deal with the "it" too. We both have children who have a sensory processing disorder or SPD. It's not horrible, but sometimes it can be a little frustrating especially when others don't understand and just think you need to "reign in" your child, who think your child is just a trouble maker, or who think your child is spoiled. So for the benefit of just getting it out there,

SPD is: the inability to use information received through the senses in order to function smoothly in life (The Out of Sync Child, Kranowitz, 9). In other words, the brain is just wired a little different and processes differently than most people.

For example if you were running and tripped your brain would send out a message saying "Catch yourself!" But for a child/person with SPD, specifically dyspraxia(difficulty in motor planning), they wouldn't get the message fast enough or maybe at all and may result in injury.

The kid doesn't have control of it and ideally would be taught how to cope with the challenge. Sometimes children are thought to be mean or aggressive when they may just be rigid with certain things. Example: Rudy shut the door on Alice's fingers. Seems mean, right? But, when you look at it from Rudy's view... mom really wants that door to stay shut... she's told him several hundred times... he thinks he is just following the rules and helping mom. I'm not saying that is always the case, but I know it can be and if you take the time to look from the view of the child you can usually tell what the motive is. It seems there is a very fine line when it comes to what was intentional and what was not. Finding the balance can sometimes really be annoying.

It can also effect social interaction, self regulation, and the ability to learn.
With Mike it still cracks me up sometimes when I vacuum. He comes running into whatever room yelling at the top of his lungs that "it's too loud!" and yet still needs to sit and watch to make sure it doesn't get louder... of course with his hands over his ears or with his head phones on. We've been blessed to have had great teachers, our OTs, to help us learn how to help Mike and Josh with it. They taught me two techniques that really helped them settle down and start to learn to self regulate... brushing and joint compression.

I usually get really weird looks at church when I do this, but the benefit for Mike and the primary teacher are worth it. Why do they work? Well in the words of Sean (Josh's OT) "Brushing provides a deep pressure on the skin, which stimulates the nerve endings to send impulses to the brain. As these impulses go to the brain, the brain is bombarded with this sensory input, causing it to calm or regulate which helps the individual tolerate adverse stimuli. Brushing mainly provides tactile/touch inpulse to the brain and this type of stimulis is effective for a maximum of 2 hours. Joint compression is a proprioceptive type of stimulus which is our awareness of where our body parts are. This stimulis has a much longer lasting effect on the brain as it has to process it. Brushing and joint compression provide the brain with appropriate input or desensitizes the brain to allow it to tolerate or process irritating or obnoxious stimuli. All the sensory input that we receive has an effect on us. It can be stimulating, calming, irritating, or non-important. Brushing and joint compression have a tendency with a majority of the population to cause a calming affect. We are trying to use this calming
affect to help Mike or Josh to deal with irritating stimuli by having
the brain regulated with safe sensory input."

This is Sean and Josh in body socks that gave Josh enough proprioceptive input that he could attend to tasks for longer than normal. It made quite a difference. Funny how little things do that.

It was really worth it! So, I know this was really long winded, but hopefully it helps someone out there who happens upon this. There's still a ton more info on SPD and the different ways it affects people and different ways to help (deep pressure/ weighted blankets), but I've written enough. If you want to know what types of things to look for here's a link to a check list/ website that I've found helpful. Have a wonderful day!

Monday, February 8, 2010

Calm Inevitability Jan. 20 2010

A year has now passed from the last time I was able to hold my little Joshua Jay on this earth. It’s been 12 months of ups, downs and many, many inbetweens. Sometimes it felt as if no one could understand the longing, the miserable missing, and the incredible guilt that can come from being a parent and not being able save your child. It’s been a year of a few steps forward and a few steps back, hopefully more forward than back. Steven, Michael, and I have been blessed with peace, comfort, knowledge, and understanding during this ordeal. We have been blessed so abundantly by the Lord this passed year, sometimes it didn’t seem like a blessing, but it’s always ended up being another testament that the Lord knows and is much, much wiser than ourselves. There are still many questions of “why did this happen?” and “does it ever stop pricking at your heart?” But again the blessings have rolled in in unexpected ways to help our family feel love and comfort. I have appreciated so much the kindness and understanding that I have received from a thoughtful visiting teaching companion, little girls in the activity day group, my mother and father, my siblings and their families. In circumstances where grief is great, having people show that they care is a tremendous mercy that I don’t think we realize until we need it especially when it comes from those whom we love and are close to.

During the past weekend it was impossible to ignore the reminiscing in my heart of the events of last year. It seems as though Steve and Michael felt the same way too. Sunday was the hardest because it was “that day” last year. It was the last day that Joshua was here, the last time we heard his voice, last time we carried him, the last time I could wrap him up, last time we were able to feel like a complete family. Michael has talked a lot of Josh in the last week and even the night he passed away. I had a hope that Mike wouldn’t remember very much because I thought it might be too traumatic, but he remembers quite a bit. Michael remembers Josh being upset at the doctors, giving him a hug, taking him movies, and me cuddling Josh in the hospital bed to keep him warm. We were very blessed that night to have my parents and sister there to watch over Mike and give us a lot of support, support that I’m sure they never wanted to have to give. Steve and I remembered the doctor’s kindness, the surreal feeling it all had, and making Dr. Porter sit on the ground and answer blunt questions about what to do. We remember that calm peace that was placed lovingly in our hearts that night as we spent time holding Josh’s body and trying to accept the Lord’s will for us. We remember kind nurses and hospital staff giving us all the time we needed in the room and the Priesthood blessings we were given. But the most important thing that we remember is how abundant and unrestrained the Lord’s spirit and love was that night. We are so thankful that we were able to feel Josh near us even though he had passed and thankful that we were able to be peaceful.

Michael picked out a spider man car to take to the cemetery along with an elephant (Josh’s favorite), an alligator, but not a lion which Michael let us know was something Josh liked. We also took out white balloons because it’s too cold for flowers. My mom came down on Tuesday and took some pretty orange and yellow silk tulips to Josh’s grave, which just brightened my day. We spent some time together talking and remembering time with the family, it was nice to have that time with her and know that she understands that pain and ache that I sometimes feel. Steve helped me be calm and accepting and just helped me feel loved. We were going to go out to dinner to Leo’s because Michael and Josh loved to play there together, but Michael has strep and that’s been another wonderful adventure ;). We feel a lot of gratitude for Michael and his wonderful appetite for life. He’s such a joy and a blessing to have in our home and part of our eternal family. I know someday we’ll be given answers as to why Michael and Josh were sent to us together only to have Josh leave us earlier than we ever thought. We are thankful that Lord has always answered our prayers and taken care to help heal our hearts. He has given us hope. Hope enough to look forward to the future, to the adventures we still get to experience on this earth, and hope to keeping moving until we are all together again.

I know that someday joy will be unrestrained as we all are reunited to those whom we have been separated from. But for now we find strength and joy in our loved ones we have with us and hope in the future.

Always loved, Always an adventure, Always will be missed.
Until we meet again, we love you, our little Joshua Jay.