Month: May 2014

School days…school days…dear old golden rule days…Part 1

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Picking up where I left off from last night…

The fall after J turned 3, we decided to start doing home school for preschool.  We were successful for a while, but then so many things started happening. There was a mold issue in the bathroom upstairs, which meant that we were down to just one bathroom…no shower…for two weeks…right before Christmas.  Our landlord wasn’t very nice to us during the whole process, not that it was our fault.  We were just the victims of a leaking bathroom upstairs from our neighbors. Two days after Christmas I found out I was pregnant with A. Life happened…home school suffered and became non existent. I just couldn’t take the chance of trying to walk down the very steep steps into our basement (my home school room) while carrying C and feeling nauseous from the pregnancy.  As it was, J wasn’t very good at going down the stairs without having issues. Sigh, it was a tough time for us.

I learned for probably the millionth time about the preschool in our school district.  So, finally I decided to take the jump and get J evaluated for it.  Granted, I didn’t actually make the call until after he turned 4. This was brought on by our Children’s pastor at church bringing up to both James and me that he was concerned about J and his development and social interaction with the other kids in his Sunday School class. Fortunately, we have a lot of friends at our church, including the Children’s pastor, and the gal who did an observation on J a couple of Sundays later. What’s great about her is that she works as part of the evaluation team at the preschool J was evaluated at. She could tell that he would most definitely benefit from the program at the school.  So, finally I made the call.

We were not able to get him evaluated until the fall, which could have very much complicated things. A was born on August 27th, and fortunately J wasn’t evaluated until mid-end of September. Fortunately I was able to heal up before having to take him. We had to wait until the end of October to hear how his evaluation went, and if he would be qualified to go to the school.  During the evaluation though, it became obvious that although he could say his entire alphabet, and say it well, that he needed help for speech.  They also saw that he needed help occupationally, but that’s not what this evaluation was about. It was kind of like they were on the fence about letting him in though.  He needed help, but he was SO smart. sigh. I didn’t know what was going to happen.

October rolled around and we finally got word.  He was accepted and would be given an IEP (individualized education plan) for speech.  He would receive 40 minutes a week, in two 20 minute sessions. They said NOTHING about his delays at all occupationally.  When I asked about it, they said they would want him to adjust to classroom learning before they evaluate him for that. One part of me was okay with that.  The other part of me was outraged.  It was obvious that he needed help.  It was so so clear to me that my FOUR YEAR OLD couldn’t jump with both feet off the ground at the same time, and that something wasn’t right. Especially when his brother, who was almost 3, could.

So, just before Thanksgiving, we started J in preschool. He LOVED it.  His teachers were fantastic and he started to become much easier to understand. It was awesome!  I found out that his class went down to the Large Motor room once a week on Tuesdays. It was awesome.  The OT (occupational therapist) could see that J needed help, so finally at the end of March (yes, March) we were asked to give permission to have him evaluated.  Seriously…I had been giving my permission for about 6 months at this point, and even asking for him to get evaluated. Sigh.

Just about the end of the school year last year, I had a meeting to get the results of  the evaluation. J qualified! Yeah!  I was excited.  I was told that he would be given 15 minutes a week of OT. Then my excitement faded…seriously, only 15 minutes a week?  Sigh…I guess it’s better than nothing…so we’ll take it.  It wouldn’t start until this school year.  We had been praying about what to do for him for this current (well, almost past) school year. We applied for a pilot program called Extended Day Kindergarten…and by God’s grace, J’s name was drawn and accepted for the program! This was huge. When you add it up, 55 minutes a week of being pulled out of class for a half day kiddo is not the best. That’s a lot of instructional time that he would be missing each week, especially when half day kindergarten is 2 1/2 hours a day.  So, you can imagine my elation when he was accepted.

 

Stay tuned for school days part 2.

Congratulations! You’ve given birth to a toddler!

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Yes, those were the words that my OB said upon pulling J out during my c-section.  Well, it’s something that has stuck with me every since…I birth toddlers. Crazy sounding, right?  Well, at birth J was 9 lbs 13 oz and 22 in long.  He was a big boy!  As our time in the hospital came to a close, little “birthmarks” started showing up on his skin.  We didn’t think anything of them at the time.

At 6 weeks old, J had to have a procedure done to close up the bilateral hernias he had.  It was minor, but as a mom, it was tough on me.  A week-ish later we went back to see the surgeon for a follow-up.  He looked at J and said something to the effect of, “oh yes, the little guy with the spots.  You’ll need to keep an eye on those.”  Um, ok.  We brought it up to our pediatrician at our next visit and she said, “oh…hang on, let me get my book.” flips pages…. “yes, these are cafe au lait spots.  You might want to consider getting genetic counseling about these.  And that was it. She never mentioned anything else about them for the next FOUR years.

In the mean time, J was showing significant delays in his gross motor skills especially.  He didn’t really start rolling over until about 5-6 months old (somewhat typical…maybe…except that he didn’t roll…at all during this time…just spun in a circle).  Once he mastered that, it took him a while to even army crawl.  That started at 9 months, which we were elated! He finally got up on his hands and knees to really crawl at 13 months old.  Even during this time, I felt like something was not quite right with him.  The thing is, any time I would bring it up, other mom’s would tell me over and over again the age old “every child is different”, “he’ll get there”,”he was a big baby, sometimes it takes them longer to do things”, “you can’t compare him to other kids his age”…on and on.  The truth is, I believed it.  I went into a happy little place of ignorance and tried to ignore the feeling I felt that something wasn’t right.

By 15 months old, J was pulling himself up on things and cruising the furniture.  He finally started to walk on his own, granted only 5-6 steps at a time before falling down, six days before he turned 19 months old.  At this point our pediatrician was concerned, but again, only said it once and didn’t ever mention it again.  J started “talking”…as in one word at a time by a year…which was typical.  Finally something normal, but that went down hill fast. He continued to only talk one word at a time until he was 2-2 1/2.  It was ridiculous. He understood much, and his vocabulary was expanding, so staying in my ignorant box I did.

Through this all to this point, I didn’t know any better.  I thought I was doing what was best for him.  I realize now that I wasn’t giving him my total best. I know now that I should have been a better advocate for him. I just didn’t know how to be a better advocate.  I also didn’t want to “go against the tide”.  I didn’t want to “rock the boat.”  sigh…I needed to learn how to rock the boat long ago and how to swing against the tide. It’s not been an easy road, but we are slowly getting there. It wasn’t until just recently that I effectively “grew a set” and started to be a better advocate and mom for J.

I know, it sounds sad, pathetic, whatever. I don’t really need sympathy about not doing what was really best for my son.  Honestly, I just need encouragement that despite what we are now going though, that there really was nothing else I could have done at that point, other than try to get my pediatrician to be wiser and not go back and forth on how she felt about things at each visit. I do wish that I had done early intervention with him.  It would have helped him out.  But, alas, you can’t change the past…well, unless you’re The Doctor and you have the Tardis. 😉

Getting started

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Figuring out that the need to write a blog is a good thing.  At least I think it is.  I just feel like there’s not a lot of people out there, aside from the NF Midwest group that I’m apart of, that talk about Neurofibromatosis (NF).  Honestly, I am still learning so much. I feel like I don’t really know anything about it at this point, but as I learn things, I’m going to be sharing here. I will start sharing our journey so far very soon. 

As for me, I just hope that this blog can serve as an outlet for me to share my fears, concerns and joys.  I also hope that I can help to inform more people about what NF is. I’m finding that learning to stand up for your child, not letting people tell you that he’ll be fine, is difficult. It’s draining and exhaustive…but necessary.

So, tune in again soon, I’ll start sharing things from back when J was born until now, and how we didn’t realize that we were already on the NF walk until today.

~Sam