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Friday, November 6, 2015

Halloween fun, outings, appointments and IEP/placement!

Things have been busy since my last post, we did several fun things for fall/Halloween.  We took the kids to the zoo, the dinosaur museum in Ogden for their Halloween night which included games with prizes, and accompanied Carter on a field trip with his school to Black Hills Farm and went to our ward's trunk or treat.  The kids had a fun Halloween night trick-or-treating at my parent's house in South Jordan with the rest of their cousins.
Dinosaur Museum

 The kids got their flu shots, and Carter had his yearly eye appointment at Primary Children's.  It was a little crazy taking all three kids with me, but the doctor said he was the most attentive he had been for him yet and had excellent vision.  Carter also got fitted for new braces for his feet/ankles since they're too small.  His wheelchair is also going to be adjusted for his growth.  We also had to go back early morning to Primary Children's for more dental restoration.  Carter managed to get his spacer out with his tongue, which he could have choked on, so we had to go back in for them to put in a silver crown with the spacer attached.  This will stay in better and will help guide in the adult tooth once it comes in.  With Carter having a smaller mouth and getting lots of adult teeth fast (6 so far), and not being able to tolerate braces in the future, we'll have to keep a close eye on his teeth and how they come in.  He didn't like the effects of the anaesthesia, but as last time, as soon as we got home he was happy again.

I love this picture of Keaton, so happy!  He was even sick that day.  Keaton had his 15 month appointment and was 55% for height, 60% for weight and 50% for head.  He is still receiving physical therapy once a month and is doing great!  He just had his 6 month review and met every goal but one, and we made new ones.  Every time his therapist sees him he is improving rapidly.  Keaton is pulling up to stand at many surfaces and tall kneeling and transitioning in and out of all different positions, and feeding himself small finger foods.  The pediatrician was concerned with a few things:  that he doesn't point or wave which is a pre-language skill, and that he isn't talking other than babbling.  So we are going to have the family development specialist start coming out as well, to help Keaton with his language and even some feeding therapy.  Keaton is behind, but not that bad.  We want to work on him side-walking by furniture and even with a walking toy that's weighed down so it's slower.  He loves playing ball, tossing it back and forth with you.  He loves to crawl everywhere and is getting faster and better form.  The stinker is getting teeth so he still isn't sleeping all night.  He loves his milk and eating most things and watching his sister play and imitate him and definitely still a momma's boy and loves to cuddle!  He has quite a pair of lungs on him and screeches when he wants your attention and loves to imitate noises.  Carter and Keaton often fight over the same toy which is funny.  I love my little but big Keaton boy!

So, I had Carter's big IEP today and his 3-year placement meeting.  It was three hours long!!  Intense.  Their paperwork is now mostly online and his teacher is still new, so I think it made things take a little longer than usual.  The speech therapist and child psychologist weren't present, and over speaker phone was his physical therapist and a school representative.  Present were myself, his teacher, occupational therapist, school nurse who feeds him and another school representative.  We went over Carter's progress and testing in every area, especially vision.  Now that he has such a glowing report from his eye doctor and there was no mention of inattentiveness, they didn't have much to say on his vision.  He does still need time to process what he's looking at, but can see both near and far and to the side and tracks wonderfully.  Being seizure free and seizure med free certainly has helped with his level of awareness.  His scores were highest in social because he loves everybody!  So cute.  Sometimes it's hard to hear how low he actually is on his skills, but to me he's doing excellent!  You learn to appreciate every achievement, no matter how minor.  His physical therapist was most pleased with him, because overall he had made 11% improvement.  He's pulling up to stand, loves to walk with his push walker at school, he's all over the place!

We also had to discuss goals in each area:  pre-academics/vision, gross motor, fine motor, speech and social skills.  There has to be a math and language goal which the math is covered in fine motor and language in speech.  A few examples of his goals in vision; he will recognize his name in big-sized print when given 4-5 options with 90% accuracy, and that he'll independently pick an object out of 5 choices.  In social skills, that he'll learn to take turns playing with peers and even learn to play with them.  So far he mostly plays with adults or by himself.  In gross motor, they want him to lower himself to the floor independently 4 out of 5 times, take 3 steps between furniture, and continue to work in his gait trainer.  While he is great at standing, he has trouble getting down safely on his own.  In fine motor, that he will place 3 items into a container (also a math goal, can count as you do so) and learn to help put on his coat or shoes while using both hands.  These goals are because he is great at taking objects out of things, but not back in.  And he is good at using one hand, mostly his left, but needs to learn to use both together.  His thumb is also extended and he doesn't use it to pick things up, instead using a raking motion, so the OT suggested a splint for his thumb to pull it in to help him learn to use it.

Finally, speech/communication goals.  Since the speech therapist was absent, I talked to him over the phone to go over his goals.  Carter is showing interest in imitating noises and being so aware and interested in what's going on around him, that we want to explore his communication to help him be successful in life and school.  Obviously so far, his communication has been sorely lacking because he is non-verbal and doesn't sign or point.  So, we want to work on using pictures more for communication.  They've already done this some, but we want him to do it more consistently.  We want to find 10 words or sounds that Carter can use as approximations so he can request a desired item.  For example, if he can say 'ba' we can use that as bottle whenever we feed him, for him to identify the action.  Or 'ma' for mom, etc.  He can't say actual words yet, but we'll start with whatever noise he can say.  Then, we want him to be able to make a choice out of 4 pictures for what activity or object he wants.  Then, following reading a book or an activity, have pictures that represent that activity and ask him questions and have him answer by selecting the picture that goes with the answer.  We may look at using a communication device as well.  A lot of kiddos end up with pictures all over the house to represent an activity or object, so their non-verbal child can make choices.

The last part of the meeting was to discuss placement.  It's been three years since it was discussed, and with his vision not being a huge issue, there was really not a need for him to stay at a school that focuses primarily on vision.  Their goal is to educate the child in the least restricted environment possible, while still making sure the child is receiving what they need.  I knew this was coming, but was still sad because he's grown so much and done so well at the school for the deaf and blind.  The district doesn't like you "shopping around", so they're sending his file to the Davis district, then they'll see which school can meet his needs and let me know.  I will also likely contact our neighborhood principal to get a feel for the Kindergarten special ed program there.  They call it a functional skills class rather than special ed class.  He would go from full days to half, but they can still meet his IEP goals and speech and therapy needs there.  Of course any change this big is scary, so we'll see what happens.  They want to transition him at the beginning of the new year.  The plus side, is Carter will be able to focus more on education and not so much on vision as he has in the past few years, and he'll have more interaction with his peers.  They say it's sad to let a kid go, but great because it means they are growing and ready to move on.  We love our Carter and his wonderful progress and are so thankful for all the teachers he's had to help him along the way!