Tuesday, October 25, 2011

October 13, 2011 - School, Speech and Stuff (finished 10/25)

Well, it is already October and I have yet to write anything about Conner's new school (which started at the end of August). I don't know why. I'm not sure why I have been holding back! There has just been so much going on, I have been feeling so much stress related to school and therapy for Conner and I know he has too. Maybe I'm waiting to figure out what I want to say. I don't know why I care, but I care how my words come out. I don't want anyone to think that we are anything but so proud of Conner and how much progress he has made over his life and over the last few months. But it has been a rough few months. Honestly, with his sleep problems, it has been a rough (almost) year and we are no closer to reaching a solution. So, here I am, today, sitting here in Starbucks all by myself (B is home with David because she was sleeping and neither of us wanted to wake her up) thinking that I should really do a good post.  I'm sure it won't happen over this little time I have...it will be a process of getting the information out of my head...

Okay, so it's been 2 weeks since I started this post. Ironically (or not!), I am sitting in Starbucks again and Brennan is home again with David. This time she is home because she is sick. She has been sick for 2 weeks straight and it is so frustrating. She can't seem to kick whatever this is (terrible cough and runny nose) and she isn't sleeping great or feeling great, so David is taking her back to the pediatrician (we were there 2 weeks ago and they said it will go away on it's own, then I talked to the peds office a week ago and got the same response...frustrating).

So, back to Conner. Here is how the school situation went...
At the end of last school year, we had decided Conner would go to a new school. In case you weren't following, the school wasn't really that exciting about accommodating Conner. He doesn't have a ton of special needs at school, but anything seemed to be too much. So since they weren't excited about Conner and how much progress he is making on a daily basis, we weren't all that excited about keeping him there. When we had Conner's IEP at the public school at the end of last school year, we thought we had come up with a great plan. It was for Conner to be in the regular preschool class from 9-1 and then in the special education preschool class (PAL) from 1-3:20. Our biggest concern about putting him in that class was that he learns by modeling behaviors/speech, etc and we were concerned because the majority of the class needed help with speech. But we thought if he was in general ed all morning, the extra help and therapy would be great in the afternoon. The only problem is that it is 5 days a week and we really didn't want Conner in school 5 full days and if we put in him 3 full and 2 half days, the half would be in the afternoon and get in the way of us really doing anything fun or relaxing. It didn't turn out to matter because we never got off the waiting list for the 3 day general ed class.

So with about a week before camp was over and a few weeks before schools started, we were scrambling to find something appropriate for Conner. Well, we lucked out (at least I feel that way!). Conner went to a fully inclusive camp and they have a full inclusion program in their preschool. Conner gets to go to typical school with "typical" kids and he has an "advocate" who spends the day looking after him. She doesn't go with him to everything, but does help him with things that he needs help with (i.e. going to the bathroom, fine motor skills - art projects, writing, drawing, cutting, etc.). She also goes in the pool for swimming (they get swim lessons once a week) which takes a lot of worry off of my mind. We signed Conner up for school on a Friday and the school started the following Wednesday. We are very happy with our decision and thankfully it has turned out great so far. It's not perfect, but I don't think anything would be perfect for any child, but it's as good as I think it's going to get. My only regret...we didn't know about it sooner.

The things that we really LOVE about the school: Conner's teachers. They are fantastic and I am SO appreciative of how they are with Conner. They actually really like him, really want him to learn, and don't see him as "unteachable" which is how we felt last year. They care about him. They make a ton of effort to help him even though it's not always easy. There are a lot of kids in the class, but Conner is not just an extra kid in the room, they really include him in all the activities and want him to succeed. It is night and day from how we felt last year. Conner seems happy in his classroom. He has had a few bad days when he didn't listen or didn't participate in everything, but overall, he has had mostly good days. He is slowly making some new friends. This has been the hardest part for all of us. He loved some of the boys he has been in class with for the last 2 years and now he is with all new kids. It's so different this year because he has had so many boys in his previous classes and this year it is primarily girls. He likes to play with a few of the boys but when I ask him who he played with, he always tells me a name from his class last year. I'm hoping over the year, it will get better. We have already been invited to 2 school birthday parties this year and Conner played with a bunch of the kids, so I am hopeful. He still is happy and easy-going, just not having any playdates with any of them just yet.

The biggest difficulty with all this new stuff is that as of the first day of school, August 23 (the date is burned in to my brain), Conner started stuttering terribly. He has stuttered on and off before but it was very mild and usually came when he was learning something new and left in a week or so. This time, it came on strong and seemed very uncomfortable for him. It caused many tears for us (not for Conner) because it lasted for so long. Last week, it seemed to disappear as quickly as it appeared and this week it has come back. It's funny because for so long (3 years), Conner hardly made a peep, never made words and I was worried about it. But I'm not sure if I was ever so upset about it like I am with the stuttering. I think it's because when Conner didn't talk, he just wasn't talking. He wasn't struggling to find a word, he just couldn't make any words. The stuttering is a struggle for him. He's uncomfortable, the veins pop out of his neck, and he can't get the thought out of his mouth. So there are a lot of theories about this (Conner has a private speech therapist, a speech therapist at speech preschool and speech therapist at the public school). The therapists (his 3, plus he was evaluated by a stutter specialist) believe that the stuttering could have been triggered by a stressful situation (i.e. starting a new school) or that he is just learning so many things that all these new thoughts are trying to come out all at once and he can't them out fast enough. I think it's probably a combination of the two things. The stutter specialist was great and if it continues to be a problem, we will try to get in to see him. He thought Conner sounded great (it was during that week that the stuttering magically disappeared) but we are going to keep an eye (ear) on things and reevaluate in January. Some of the therapists want us to ignore the stuttering, which as a parent is very difficult (how do I hide/explain the tears in my eyes?). Some of the therapists want us to try to help him pace himself when he talks (smooth, bumpy, etc.). My conclusion, too many therapists, too many techniques, too confusing for me, so how should I expect my 4 year old with special needs to handle it?

The solution...scale it back. Conner very rarely gets to participate in fun activities. He doesn't get to take soccer or karate or swim lessons because he is busy with OT, speech and horseback riding. Not only does it take up every minute of his day, it also adds up financially too. So 2012 is going to be a year of change (at least that is the goal). We are almost done with our 60 visits of allotted therapy. We have about 5 sessions of speech and OT left and then we plan to take the rest of the year off. Then, in 2012, we are going to try to do private therapy just one day a week. Conner will continue to get speech at the public school (it's inconsistent, but we love the therapist) and he may also continue to go to speech preschool. Another change we are planning is to streamline things. If Conner continues at speech preschool, we will do all of his therapy in the same building so that they are all on the same page, using the same techniques and not confusing Conner, David and me with all these different methods of therapy. Conner has also had some challenges with his occupational therapist. He has some great days, but he also has some not so great days and the therapist has some not so great days too. Maybe it's just time for a change. We also want to eliminate all of the crazy driving and rushing that we do on a regular basis and try to just do more fun stuff. Conner's therapy has been VERY inconsistent lately with absences, vacations, sicknesses from his therapists and so we hope these changes will make things more consistent too. We have high hopes for 2012!!

Conner has also been doing hippotherapy on the weekends. The problem has been that Conner's therapist has had a lot of health problems over the last year and a half. She had breast cancer and was out for a long time recovering. Thank goodness she is okay. We absolutely love her and all that she has done for Conner. Conner LOVES going to the barn, riding the horses and cleaning poop! But after she came back, she broke her ankle and needed surgery and she is still recovering. This time she has someone helping her out. She does sessions every other weekend which is okay, but we don't really care for the therapist. She has not challenged Conner at all and it's not that fun for him. The reason why we drive an hour each way and pay so much money is for the therapist. So we have also decided that until she comes back, we are taking another break from hippotherapy. Lots of changes, hopefully for good for the little man.

Overall, Conner is doing great. We find ourselves in a position that we never expected to be in. Conner is doing awesome and doing things we never expected him to do. But that doesn't mean that we stop here. We keep raising our expectations of what he will do and what he can accomplish. We hope that he will be able to keep making progress in the right direction and that some day, he will come close to "catching up" (a phrase I hate). It's hard because when strangers meet Conner (before he talks) they don't think that anything is "wrong" with him. We met a woman this weekend whose child has cerebral palsy. She is a Zumba instructor and was doing a demonstration class and Conner absolutely LOVED it. She could not believe that Conner has cerebral palsy too, that he was born at 23 weeks, that we were told he would never walk. Disabilities have a lot of different faces.  Even when he talks, people look at me as if I'm a bad parent because my 4 year old doesn't talk like a 4 year old. I want to speak up and say something but then why do I have to explain to every stranger that I come across that my incredible miracle child has come so far and he is talking, which to me is a miracle in itself. I wonder if I will ever feel like I don't have to explain.  I had a teenager suggest "early intervention" to me. Ummmm...yeah, we are doing that already. The same teenager asked me "What does he have?" as if having a disability is like having a cold. We do everything for our children. It's exhausting and sometimes seems like it isn't helping, but we continue to try to get Conner to do everything that is possible.

Okay, well enough deep thoughts for me for today. I'm tired, mentally and physically. David is tired mentally and physically. We are all feeling a little less than 100%. We are drained. We need a vacation. We need to win the lottery. We need so many things. At the same time, we know we are beyond lucky. We are blessed. Whatever word you can use to describe lucky, we are it. Conner is alive. He is walking and talking. He was born 17 weeks early. He had a bleed in his brain. His MRI looks like crap, but he is defying the odds. He is doing things the doctors said he would never do and hopefully will keep doing. We will just keep searching for the right things for him and surround him with the best things possible.

Tuesday, October 18, 2011

Thursday, October 13, 2011

October 13, 2011

A few weekends ago, we went to a really great kids concert. They had 4 bands playing all for kids and before (and during) the show, they had an instrument "petting zoo" set up. I wasn't sure how Conner would do. He LOVES music, but he HATES loud noises. We got there (early) and he went right for the instruments. He got to try out drums, a xylophone, a bass, cello, and guitar. He absolutely loved it. I don't know if he'll ever have a long enough attention span to play an instrument, take lessons, practice, etc. but I know he loves music. He plays our piano at home all the time. He kept going back to try out something else! I keep asking him what instrument he wants to play and he says guitar...I don't know though, he seems pretty happy playing those drums!

Then the LOUD concert started. First up, Mr. Seley and the Troublemakers. They play great music that is kid friendly, but not annoying to listen too!! We have seen the group a few times at the zoo. I think they were Conner's favorite. He got right out on the dance floor with a bunch of kids he doesn't know and started dancing. He came to get me a few times to dance with him, but most of the time, he was just up there shaking his tushy!! He had a blast.

After Mr. Seley played, a few of Conner's friends came so he got to play with them for a bit. CandyBand was next and then a few other groups (that we didn't like as much). He outlasted everyone! He had such a good time so when we found out that the Laurie Berkner Band will be playing in Grand Rapids in March we decided this is a definite road trip for us! Laurie Berkner has been one of Conner's favorites for a few years already and I'm sure Brennan will love her too.

October 8, 2011 - 7 months

This year is going so fast. Brennan is already 7 months old. She has grown up so fast. She looks like a toddler already (to me anyway!). I'm glad to see her accomplishing milestones because I am always worried about everything (because of our experiences with Conner) but I'm also sad to see how fast she is growing.

Anyway, little girl has been growing and doing so much these days. At 7 months, she crawls all over and sits up most of the time. She gets a little antsy in her carseat (until she falls asleep!) because she is leaned back a little more than she would like. I still have her in her infant carrier, mostly for the convenience. When we are on the go with Conner and she falls asleep and is trying to nap while we are out for the day, it's easier to keep her asleep when I can just bring her in her seat. I know those days are limited. Brennan is pretty long and heavy. Before too long, we will have to switch her in to a bigger seat. That will be a big adjustment and I'm sure I will spend a lot more time sitting in the car waiting for her to wake up!

Brennan has been pulling up for a few weeks now. She loves to stand up and look all around. She falls down a lot still. At first, she was falling pretty quickly and was crying a little, but now she pretty much just plops on to her tush to get down (because she hasn't figured out how to get down gracefully yet!) and get moving again. She is starting to take a few steps (a little cruising) but not too much. She picks up all of Conner's toys now. She's not really interested in all the little baby stuff (except for her play table to pull up on!), mostly she wants whatever Conner is playing with. Conner isn't loving sharing so it has been a little challenging. He is learning and it is getting better about gently taking things instead of snatching them out of her hands. He has definitely changed with her since she was a tiny baby and wants to play with his stuff! He still is a great big brother and now every time they are sitting near each other he asks where the camera is for a picture! The photos never turn out so good though!! She is a moving target these days...hard to catch her on camera sometimes!

B eats very well now. It only took a few weeks on baby food and cereal before she really started to like it. She now is eating oatmeal and stage 2 baby foods twice a day. She has added lots of new stuff to her diet. She likes pretty much everything and opens her mouth wide for food! She is eating mangos, pears, apples, peaches, apricots, peas, squash, spinach, sweet potatoes and carrots. I'm sure there are a few more, but I can't remember. The only food that wasn't great for her was green beans and only because it made her SUPER gassy! I'm sure it will be fine mixed with other stuff, but on it's own...NOT SO MUCH! I can't really remember what we did next with Conner. He ate baby food forever. So I really don't know what to do next with Brennan with food. We are going on vacation soon so I don't want to change too much before then. And she doesn't have any teeth yet, so I'm in no hurry to add anything. She has tried puffs, which she is so-so about. I have to feed them to her, so I'm thinking she isn't ready for them...and she has tried a baby rice cracker thing (can't remember the name) but she wasn't that interested. She picks everything up okay, just won't put it in her mouth! So for now, we are just keeping things how they are because she seems okay with it.

Brennan has been a little more vocal (although I still worry about it). She mostly makes a lot of mouth/nose noises. Raspberries and blowing air out of her nose all the time! She is still a super happy and really good baby. She goes along with our schedule, no matter what it is. Things change on a daily basis and she just goes along with it. She doesn't nap great when we aren't home, but when we are home for a day, she usually takes one good long nap and a few little cat naps. She just crawls up to one of us, gets comfy and falls asleep for a little (maybe 30 minutes or so). She has been waking up super early lately so we are trying to figure out how to get that backed up a little. It's been before 6 on a lot of occasions...too early!

That's about it for this month. We love little B a ton and can't wait to see what she does next!

This is our attempt at 7 month photos...this is what I got, didn't go so well!!