Back to School and Advocacy

First Day Back at School 4-8-14

To blog or not to blog.....that is the question. I guess the answer is....to blog. It has been a bit since my last David update, so I guess it is time.

David is doing very well. He got back to school last Tuesday and he seems to be progressing nicely. I did however, keep David home yesterday and today as we had another cold snap which dropped the temps into the high 20's to low 30's. He is currently having some circulation issues that seem to be exasperated by the cold, so I made the executive decision to keep him home and warm. Tomorrow, spring is suppose to show itself again, so at least he will get a couple of school days in before the Easter break.

Since last I blogged, David has ended up in the ER twice. Both times blessedly we were sent home within a couple of hours. The key to being sent home I have learned, is to come prepared to stay. Had I not come prepared to stay, you can better bet we would likely still be there. At any rate the first ER trip was the same day he stood for the first time (a week ago last Thursday). By afternoon his feet were turning purple and black if not elevated. Dr. K wanted him taken to the ER and after thorough examination and having his feet elevated for awhile, the color, warmth and strong pulses came back to them. Dr. K was relieved and said this was not uncommon after all he had been through, but that she wanted them checked to make sure the circulation would return. The next day we made a return trip to the ER, because he laid down for a nap and when he woke up, his knee on the broken leg had swollen to the size of a softball. I was just sure he had broken that leg again, however after a dozen or so x-rays to get a view around all the hardware, they said his knee and leg were fine and that they thought it was just him trying to stand that made it swell. They said to keep trying to stand and then to ice it, so that is now our daily routine.

I also learned a lesson that weekend into the following Monday. Thursday, at the meeting at school I was led to believe that all was right with the world as far as school and David were concerned. Friday evening I learned it was not and that Monday afternoon, I learned that although the school system and specifically the Special Education Dept. tell us parents that we are our child's biggest advocates and that we MUST advocate for them....it is pretty much just lip service. Decisions can be and are made about our kids without a parents consent and not always in the best interest of the child. If you are the parent of a special needs child and you are reading this, I encourage you to be on top of both teachers and the special ed department of your school. NO ONE knows your child better than you do and you should have a say and at the very least, prior notification of any changes being made to your child's schedule, personnel and/or educational goals. Also as a parent, it is up to us to not only sit in on IEP's but to have an agency advocate there (if possible) as a second set of eyes and ears. It is also up to us to make sure that what is written in the IEP is carried out. Finally, it is imperative that we know how much time the Sped teacher spends with our child, how much time the para is with him, how much socialization he gets and just how well all involved know the child. If you find any of these things lacking, then yes, you MUST advocate in anyway possible to make sure your voice is heard because you are the voice of your child. It isn't easy. It's not always pleasant and in fact it can be down right exhausting as there are those with the power to make a decision but will put so-called rules and regulations above the best interest of the child. Is it any wonder that so many choose to homeschool?

In time I will write more on the subject of advocating for your child, but for now I am learning just where my rights as David's parent will lead me. Many special needs parents do not have the luxury of their child coming home and telling them if something isn't right at school, so we have to be ever vigilant and know everyone that is around our child and everything that goes on when they are not with us. If this means having regular meetings with your child's team outside of IEP's or frequent visits to your child's classroom, then do it! You have to be informed. If you think that something isn't right or at the very least, not a good fit for your child....it is up to you to speak out. Change can not be made if the need to change is not fully recognized.

At any rate, David is back in school and slowly we are looking for our new normal. I think for the most part we are beyond him having much pain other than sore, weak muscles and going back full days has not exhausted him like I thought is might. He is loving the freedom of his world not being confined to just a few hundred square feet of moving space and when he went  back to school on Tuesday, the kids were so excited to see him and they all lined the hall to tell him so. I know that made him very happy.

So David's life is moving towards our goal of him walking. I know he wants to....probably even more than "we" want him to. He is so proud of himself each time he stands. The drive is definitely there. And as always, there will be speed bumps along the road and ever-so-often a dragon to slay, but in the end....I truly believe......David will walk!