Monday, February 14, 2011

February 14, 2010 - Happy Valentine's Day

Conner was struck with the stomach flu for the second time in 2 months. He handled it well, although he still isn't eating great. It seems like he can't kick this cold that he has had for a while already. He has been on antibiotics for weeks and they just aren't doing the trick. The pediatrician tested him for strep throat, just in case (because it seems like his throat is hurting) but it was negative. So we are waiting it out. When we had Conner's adenoids out, we thought it would cut down on these constant sinus infections and colds. I guess we aren't that lucky, especially this winter.

Other than the sicknesses, things have been going okay. To be honest, we have been having some challenges in many different areas. As much as we try to stay positive, it sometimes seems like things are just piling up. Today, I honestly just want to cry. I have had a terrible cold (on and off for 9 months, but really terrible right at this moment) and haven't been able to sleep. On top of that, I am having some terrible hip/leg pain that is making it hard to walk. So, while I have a ton of things I would love to accomplish in the next 3 weeks, it doesn't seem like any of it is possible. I think I am just so exhausted that I can't even think straight. I would love to have a babysitter, just for one night so that David and I could get some much needed time out together. I'm a mess. I'm sure it's obvious to anyone who knows us.

Besides me feeling like crap these last few weeks, Conner has entered a very challenging phase. He has always been such a good boy but these days he has been getting a little more difficult. He is still so cute that it's hard to get mad, and he says funny things when he knows he is doing something wrong, or when he wants something. It's hard to not crack up laughing. I think we are sort of stuck between him wanting to communicate and getting much better at it, but at the same time, he wants what he wants when he wants it and won't take no for an answer. So there have been a LOT of tantrums lately. On the positive side to all of this is that Conner's speech has changed drastically over the last few months and more people other than David and me are able to understand what he is saying. He is a long way from catching up to his peers, but he is doing so much better. At home, he talks in full sentences and can have a full conversation. I say "at home" because apparently he is not talking as much at school.

Which leads to another huge We have had frustrations all year at school. About 2 months ago, we had a meeting with Conner's teacher, the director and a few other people. They told us Conner was doing great, he had friends, he was social, he was happy, etc. We, once again, asked if he would benefit from having a "shadow" for a few weeks to help him and they told us it was not necessary. So here we are two months later. A few weeks ago, we had Conner's parent-teacher conference. It was not positive. In fact, the teacher seemed to have a hard time coming up with anything positive to say about Conner. It seemed that she couldn't recognize any growth he has made all year and she certainly gave him no leeway for his developmental challenges that he has and will most likely continue to have for years to come. The thing is, Conner has cerebral palsy, and although it is mild and he is doing fantastically well and better than we ever imagined, there are things that he struggles with. He may not jump or hold a pencil correctly for years to come, if ever. That is why he continues to be in PT, OT, speech, hippotherapy, etc, and will most likely continue in these therapies for a long time. But to say that he should not move on to the next year of preschool because he can't do certain things seems like discrimination to me. What if he could never walk, would we keep him in a baby class his whole life? These are things which I feel like we have been dealing with for Conners' whole life. The thing about Conner is that he is a sponge. He learns by seeing other kids. Being with kids his age has proven to be very beneficial for him. He has obviously picked up a TON of language and is learning new things every day. He definitely has challenges and much of his behavior at home, we believe he has learned by picking it up at school. At this point, Conner doesn't understand that some of those behaviors are not appropriate and so we are working on it at home and one would hope that they have been working on it at school. However, the teacher telling Conner to "use his own brain" does not seem to be a tactic that works well for him. I'm wondering if my language and speech delayed 3 year old really understands what that means. In any case, this is obviously a hot topic for us and I didn't write about it sooner because frankly I was very upset about the whole thing. I have not been thrilled with the school all year but now I have such regret about sending him there. I wish he had been in a class that would love him and encourage him and not act like he is such a burden.

The good things that have come out of this are that we have once again asked for a shadow for Conner (the director actually said she had no idea that we wanted one, even though I have specifically asked for one on more than one occasion) and he will be getting one beginning at the end of the month. I'm hoping that she will be able to give us some insight as to what is going on at school. I am hoping that she will also help with some of the behaviors that Conner is struggling with at school. She will be with Conner for 6 weeks and by the end of it, they will have a 2 week break and then just about a month left of school. Another good thing is that this has really given us the motivation to go out and find a different, better suited school for Conner. We put him in this school because he knew several kids from last year. He loves playing with those kids and we have made some good friends. I am sad that he won't be with them next year and we will be the new guys somewhere else, but think this is the right thing for us. We are planning to find a school that is a little more caring and loving, with smaller class sizes, that is willing to work with Conner where he is at and recognize his progress. On top of that, we are very seriously considering starting Conner in a speech/language preschool in April for at least one day a week if we can get his therapy schedule rearranged. The speech therapist that evaluated him thought the program would be good for him. She thinks he might not be talking as much in school because he lacks confidence or there are just too many kids for him to get a word in. This speech program will hopefully help him with conversation skills and comfort level with talking. We hope to do this program through the rest of the school year and then hopefully over the summer too. After that, we will see.

So this has us also thinking about what we will do for the summer. We have applied for the lottery for an inclusion program at a camp which would give Conner a one on one aide for one session of camp. There are not many spots for Conner's age group, so we don't have much hope of getting in but we wanted to try. We will find out on Wednesday if he got a spot. It would be great for him. He would get swim lessons (with the aide helping) and be at a "normal" camp. If not this year, there is always next year. If we don't get in to this program, we will probably send him where he went last year. He loved it and they seemed to love him so it was a good fit...we think.

Anyway, there is so much more going on...and I would love to update some photos, but my computer battery is almost done so I'm going to sign off for now. There are good things happening...just having a rough day I guess...and this was really frazzled... I will post some more positives tonight and try to get my thoughts organized.