As each day passes it becomes more clear how big the emotional and educational differences are between my 2 sons. As everyone knows, comparing 2 children is dangerous territory, but in the back of my mind I still find myself thinking of how different my 2 boys really are. I'm not using different in a bad connotation either, please know that I see how completely unique and special my children are. However, it is hard for me to recognize how cognitively developmentally delayed Josiah is. Even without comparing to others, brother or peer, he struggles greatly with so many things it breaks my heart. Emotionally he struggles to keep composure when in public and especially at school, amidst difficult people there. Educationally, even though I think he is about average for his age, which in and of itself is great for him, he struggles with not only handwriting but getting thoughts to gel into a sentence, then to have write that down, yikes, it becomes a hurricane of emotions! And I'm not even mentioning his struggles relationally with friends and family. He still struggles with knowing how to start an appropriate conversation with a peer, how to play reciprocally with peers (and his brother!) as well as keeping his composure when in a difficult situation.
Then on the other hand I look at Jacob and how easily reading is coming to him. In first grade he is reading so well, he already hit benchmarks for the end of the school year and it's only December! Josiah didn't read at this level until 3rd grade! (I know I just entered dangerous territory) Jacob has so many great friends at school. He is learning very quickly how to manage his body, and all the wiggles he has, in order to have a good day at school. By November he had already hit end of school year benchmarks in Math. (As a side note I am always completely amazed that my children are so good in Math, since I hate it so much!). In first grade, Josiah was still learning how to sit in class in class with peers let alone reading or math. Do you remember that it was first grade that Josiah ran way from school and the school lost him in the maze of tall downtown buildings? Yeah, that really happened.
One thing that I find solace in is how much love and empathy Jacob has for Josiah. Jacob and I had a very sweet talk this morning about how Josiah tried to talk to him about a problem he's having with a friend at school. Jacob feels bad that his brother struggles with his friends and at school so much, he said he wishes that Josiah could just be happy all the time and not feel so bad about himself.
I love my children so much and realize every single day how much of a blessings each are to me but also how important they are to each other. My heart is full and today, and this Christmas season, I will try my hardest to focus on how blessed we are to be together and really, truly love each other!
Oregon Coast
Wednesday, December 18, 2013
Wednesday, October 30, 2013
Challenging times
Life can simply be called challenging by anyone at certain points in their lives. I think we have been in that phase more times than I can count since we first became parents. This summer that just got over was fun and we had some crazy times, but the kids simply drove me insane! The boys have reached an all time high in sibling rivalry. I can see that this will ebb & flow over time in their relationship, and we will learn new ways to deal with it over time.
As I sat in my 10 yr old sons yearly checkup, I found myself wondering where the time went. Wasn't it just yesterday that I was sitting there with my infant son? As we then went over the list of medications and list of different medical specialists that he now sees, I remember the years of challenges this boy has faced. I know where that time went, sometimes it went excruciatingly slow, and other times flew by just as fast as his little mind thinks. Currently, his health is in a pretty good spot. His body is still healing from surgery, and he suffers daily with nerve pain in his back. He will be starting some physical therapy soon, just as soon as insurance approves. Emotionally, he struggles, but each day is different. Growing up just sucks sometimes, and other times I think he likes it. Educationally he continues to amaze us. He reads chapter books to me at night, and he actually likes it! That is so incredibly awesome! Just a year ago he was still struggling learning to sound out difficult words and hear we are reading chapter books now! Each day has it's own challenges and we learn new ways to help him through those.
My youngest son has an amazingly huge heart and can be incredibly tender and sweet one moment and the next moment be screaming at his brother. Such is life as little brother of special needs brother. Unfortunately, he learns some bad ways of coping with life from his brother, and most unfortunately, I don't think he yet understands that his brother doesn't get it half the time. My little Jacob has been struggling with school this year, and it's mainly working on behavior management and controlling how fast his body wants to go. Educationally, he is amazingly smart, he reads me books every night, and other subjects he excels greatly in as well. I think next year we will have him tested for the TAG program in school. He needs to learn to manage his body this year and next year I think he will ready for the excellerated education. He has made so many friends this year, and has learned good ways to show his love for his friends without being able to hug them. (Seriously what is wrong with our schools that they have to make rules against children hugging other children! What the heck!). We are very proud of the success he has made in behavior management so far but we still have a ways to go. I am learning right along with him, and that is where my challenge lies with him. I almost feel I have to be more patient with him than I do with Josiah.
Jonny continues to go to PSU this year, as well as continuing his sub-contract work. It is a considerable challenge for him to juggle college, studying, work, and family life! There are only so many hours in a day and one can only function on 4 hrs of sleep for a short amount of time. We will continue to walk this path until he achieves his goal of a degree and I support him whole- heartedly!
Thanks for hanging in there with me, even through my long absences at times.
As I sat in my 10 yr old sons yearly checkup, I found myself wondering where the time went. Wasn't it just yesterday that I was sitting there with my infant son? As we then went over the list of medications and list of different medical specialists that he now sees, I remember the years of challenges this boy has faced. I know where that time went, sometimes it went excruciatingly slow, and other times flew by just as fast as his little mind thinks. Currently, his health is in a pretty good spot. His body is still healing from surgery, and he suffers daily with nerve pain in his back. He will be starting some physical therapy soon, just as soon as insurance approves. Emotionally, he struggles, but each day is different. Growing up just sucks sometimes, and other times I think he likes it. Educationally he continues to amaze us. He reads chapter books to me at night, and he actually likes it! That is so incredibly awesome! Just a year ago he was still struggling learning to sound out difficult words and hear we are reading chapter books now! Each day has it's own challenges and we learn new ways to help him through those.
My youngest son has an amazingly huge heart and can be incredibly tender and sweet one moment and the next moment be screaming at his brother. Such is life as little brother of special needs brother. Unfortunately, he learns some bad ways of coping with life from his brother, and most unfortunately, I don't think he yet understands that his brother doesn't get it half the time. My little Jacob has been struggling with school this year, and it's mainly working on behavior management and controlling how fast his body wants to go. Educationally, he is amazingly smart, he reads me books every night, and other subjects he excels greatly in as well. I think next year we will have him tested for the TAG program in school. He needs to learn to manage his body this year and next year I think he will ready for the excellerated education. He has made so many friends this year, and has learned good ways to show his love for his friends without being able to hug them. (Seriously what is wrong with our schools that they have to make rules against children hugging other children! What the heck!). We are very proud of the success he has made in behavior management so far but we still have a ways to go. I am learning right along with him, and that is where my challenge lies with him. I almost feel I have to be more patient with him than I do with Josiah.
Jonny continues to go to PSU this year, as well as continuing his sub-contract work. It is a considerable challenge for him to juggle college, studying, work, and family life! There are only so many hours in a day and one can only function on 4 hrs of sleep for a short amount of time. We will continue to walk this path until he achieves his goal of a degree and I support him whole- heartedly!
Thanks for hanging in there with me, even through my long absences at times.
Thursday, April 18, 2013
A year later
Amazing how time keeps moving on when you don't realize it. It's been a year since I updated my blog about our lives. We have moved into our own place (almost a year ago now) since last checking in here, which really may explain my absence. Jacob started kindergarten at our local school, and is learning by leaps and bounds! Josiah started 3rd grade in a special classroom in NW Portland this school year. It has proven to be the best placement for him...ever! He has actually learned how to read just this year! Both boys have made such strides in learning this year that it literally blows my mind and has been hard to keep up with. I'm so proud of my boys!
This last year has brought new challenges for Josiah as well. On top of dealing with emotional, social, and relational challenges; he now has to deal with physical challenges as well. Over several months of changing bladder and bowel habits, we sought out medical help, which led us to see a few new specialists. The urologist actually found that Josiah has a birth defect called Spina Bifida. A complication of spina bifida is Tethered Spinal Cord, of which Josiah has, which led us to see the Nuerosurgeon. This new Dr told us about the surgery to "fix" this problem, but also about yet another finding in the MRI, that Josiah has Syringomyelia. Basically this is a cyst in the middle of Josiah's spinal cord, and is located in the middle of his back, between his shoulder blades, and it's quite long. On March 21st of this year, Josiah endured a couple hr long surgery to sever the tethered cord, as well as repair the nerves that attach to his bladder and bowel. It has been one month since surgery and we finally see our Josiah returning to us, and looking more like normal! HOORAY! He still has a long road of recovering normal bladder habits and dealing with nerve pain, but for a 9 year old boy, he is doing considerably well! We will be going back to see the Neurosurgeon in July to check up on the recovery progress and schedule another MRI to monitor the progress of the cyst. We are hoping for the best, of course, and hoping and praying that he will not have to endure another surgery to repair the syringomyelia, however, that is not out of the question.
As a mom, I cannot explain how I have felt over the last few months. It's been extremely frustrating, scary, chaotic, and just saddening. Nobody wants to see their child in pain, and this was not something that I could fix, nor take his place. Lord knows I would have gladly taken his place on the surgery table in an instant! However, that was not possible and I had to step back and trust in the surgeons hands not to "nick" a nerve wrong and put my baby back together perfectly. Trust and patience is clearly not a strong suit of mine, contrary to what many of you may think; I was going crazy! This was a whole new test on my trust in God. One that I am simply still struggling with. Why this dear child has to continue to endure not only his already multiple emotional issues but physical ones too? I may never understand why, but I have to step past this, and move on into a future still unknown. A step that I take each day, sometimes in fear and sometimes in peace, but yet I take it anyway, along with him.
This last year has brought new challenges for Josiah as well. On top of dealing with emotional, social, and relational challenges; he now has to deal with physical challenges as well. Over several months of changing bladder and bowel habits, we sought out medical help, which led us to see a few new specialists. The urologist actually found that Josiah has a birth defect called Spina Bifida. A complication of spina bifida is Tethered Spinal Cord, of which Josiah has, which led us to see the Nuerosurgeon. This new Dr told us about the surgery to "fix" this problem, but also about yet another finding in the MRI, that Josiah has Syringomyelia. Basically this is a cyst in the middle of Josiah's spinal cord, and is located in the middle of his back, between his shoulder blades, and it's quite long. On March 21st of this year, Josiah endured a couple hr long surgery to sever the tethered cord, as well as repair the nerves that attach to his bladder and bowel. It has been one month since surgery and we finally see our Josiah returning to us, and looking more like normal! HOORAY! He still has a long road of recovering normal bladder habits and dealing with nerve pain, but for a 9 year old boy, he is doing considerably well! We will be going back to see the Neurosurgeon in July to check up on the recovery progress and schedule another MRI to monitor the progress of the cyst. We are hoping for the best, of course, and hoping and praying that he will not have to endure another surgery to repair the syringomyelia, however, that is not out of the question.
As a mom, I cannot explain how I have felt over the last few months. It's been extremely frustrating, scary, chaotic, and just saddening. Nobody wants to see their child in pain, and this was not something that I could fix, nor take his place. Lord knows I would have gladly taken his place on the surgery table in an instant! However, that was not possible and I had to step back and trust in the surgeons hands not to "nick" a nerve wrong and put my baby back together perfectly. Trust and patience is clearly not a strong suit of mine, contrary to what many of you may think; I was going crazy! This was a whole new test on my trust in God. One that I am simply still struggling with. Why this dear child has to continue to endure not only his already multiple emotional issues but physical ones too? I may never understand why, but I have to step past this, and move on into a future still unknown. A step that I take each day, sometimes in fear and sometimes in peace, but yet I take it anyway, along with him.
My baby boy resting up after surgery.
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