A bittersweet day

Today was the last day of OT for Sebastian. You would think I would be so excited and in a way I am because Sebastian has made so many strides since we started with Joanne almost a year and a half ago. But it's actually pretty bitter sweet. I told her today that without her I'm not sure where I would be and I'm scared to even think about where Sebastian would be. When we started with Joanne, he wasn't really talking, he couldn't jump, kick a ball or ride a bike. Now he cracks us up with his comments and the questions he asks us. He also can kick a ball, ride a bike and we have to ask him to stop jumping so hard on the floor around the house. I'm not sure where I would be because I think the therapy was more for me than Sebastian. I pelted her with questions ever week. Like, "this is what he is doing in this situation, what can I do for that?". She would give me very practical ideas on how to work those things into our routine. She helped me to unlock Sebastian for me. I will be forever grateful!

A Normal Question

"Can he put on his shoes?" Pretty normal question right? Can your three year old boy put on his shoes? It was followed by can he dress himself? With a glazed over look, I answered "No, he can't?" I didn't know that my three year old was suppose to be able to put on his shoes. I didn't know he should be able to pull his shirt over his head or pull up his pants. The question was asked by a social worker at our first evaluation with the PET program. I felt so uninformed. The team that day told me that putting on shoes and clothes is tied into his gross and fine motor skills, two areas he's struggled with. They also shared with me that kids should be putting on their shoes and clothes around 2 years old. I had no idea but I'm never one to back down from a fight or a struggle so I was gonna work on him getting those shoes and clothes on. That question was asked about 3 months ago and I'm happy to report that Sebastian can put his shoes and clothes on all by himself. It took a lot of tears, screams, pleads and encouraging words but he can do it. This post is a part of the Scribbit Write-away contest. You can check it out here.

Sebastian's skills

Boy does Sebastian have some verbal skills. Tonight when we were putting the kids to bed, Alexandra had baby lion because it was her turn. Sebastian had her princess watch and was conversing with us about it. Paul started to try to get the kids to trade so that Alexandra could get her watch. His words to Alexandra were "If you give Sebastian baby lion, he'll give you the watch. That'll be a good trade." Sebastian says, "That is not a good trade.". We laughed so hard. You would think he would be just repeating what Paul said but he's putting his own words in with what Paul said. He's also doing really well with prepositions which is cool. Tonight he said the watch was on his arm and sleeping beauty was on the watch. The OT has asked us to work on that so it's really cool to see our work is paying off, again!

Crazy Time

Our OT , Joann has recommended that we do some things to help reset Sebastian's vestibular system. I have called this crazy time in our house. The kids get to jump on the bed and run around and be "crazy". The physical activity stimulates Sebastian's large muscle groups and it also helps all the kids to let off some steam. As you can see from the pics, they are having a good time.

Sebastian Update

We had Sebastian's IEP on Friday. I was on my own, other than the prayers of faithful friends and family. Joann couldn't make it. I met with the school psychologist and the teacher for the ECDD class. Joann had given me a list of questions specifically about the OT and the training the teachers had. Sebastian's sensory issues have flared up quite a bit in the last week. He's telling me more and more that things are too loud like music and TV. Joann wants us to start what they call "Theraputic Listening". It's where we put headphones on with his favorite song or my voice and set it at a level where it's comfortable for him. Then we do that for a few days and then take it up a level and see how he responds. We are also going to be starting the "brushing technique" to help with the touch sensitivity. Joann wanted to make sure that if we put him in the classroom, they would continue to help me with those things. Joann will train me as well so that I can do those things at home. The teacher assured me that if that's what he needs, they will be trained and will do what the OT in the classroom suggests. They will also allow activities every day he's there that will help stimulate his vestibular system. We are also asking the dr. to refer us to a audiologist to determine whether or not there is anything physically wrong wit his inner ear since he does have balance problems. I decided to sign the agreement to put him in the afternoon classroom starting March 25th. He'll be going 3 1/2 days which is better than the 4 I thought. On a good note, his gross motor skills are improving and his speech is so much better. He continues to amaze me with the things he says. He's also learning more and more about sharing and caring. He accidentally kicked me in the face the other day on the swing. I said to him that he hurt me. He said, oh mama, I'm so sorry! I'm very thankful for the help we are receiving and I hope that by the fall he'll be ready for a mainstream 2 day preschool.

The process

Although I'm in Gr right now helping out with WaYfm's sharathon, I'm also still processing what happened yesterday when we visited the ECDD classroom. Sebastian didn't really engage with the kids when the music was playing and they were dancing around. Now that I look back, he had his fingers in his ears. He usually dances around when we play music at home. I talked to Joann today and she said it seems his auditory issues are really progressing. He started to tell me when I rip the sides of his pull up to change him, that its too loud. I think as we continue to progress with him, other issues are rearing their heads. Joann will advocate for him on Friday that maybe the classroom isn't the best thing for him that maybe one on one therapy. I think the socialization and the extra work would be really good for him but I don't want him to be overwhelmed with all the noise. Oh, I have so much on my mind but I am having a great time on the radio. I'm on between 3 and 5 PM. And then 6 to 8 PM. Listen live now at Way.fm

It's a wonder what a few days can do

Thanks to all who have called and emailed to check on me after my post about Sebastian. I needed to process and pray and have a great conversation with our OT Joann. She has been a gift from God for me. She's acquainted with the system and what options I have. She also told me that she thinks they are pushing him through to the ECDD class so that he does get more help not because he's really as bad as they say. As we've done more self help things over the last few days, I see that he struggles but he's working on it. He can get his pants up part way but can't get them all the way up. He can sometimes get his boots on and can always get them off. He can put his own socks on. He's getting there. I also have been thinking also about the end of the conversation I had with Joann. I mentioned to her that I feel too emotional to be Sebastian's mom. She said, "Oh Heather, you are so much stronger than you feel right now. There are no mistakes Heather you are meant to be his mom." I feel my emotions, after I get through them, spur me on to make things better for him. If I didn't care so much for him, I wouldn't be going through this. As I've talked to some people about what's been going on with Sebastian, I've heard of so many moms who are living in denial that there's anything going on with their child. I can't do that. I love him too much to let these things go. Although, it will be tough emotionally for me, we'll keep working at this for him. Our long term goal is that he starts kindergarten with no seen problems. I guess this isn't just Sebastian's journey, It's my journey too!

Another blow to Sebastian's development

On Wednesday we had our final evaluation with the Kalamazoo County Early on program. Although Sebastian has made great strides in the areas of speech and emotional development, he is still struggling with his gross motor skills and his fine motor skills. He's also having trouble with what they call motor mapping, pretty much where you give him a task, and he can't complete it without you showing him how to do it. Also, he's still having trouble eating and trying new foods. They are recommending he get a new evaluation with the next program for his age called the PET program. I thought we were making good progress and although we are in some areas he's still struggling with the physical stuff. We have many options as to what kind of treatment to proceed with. I'll keep updating you on his progress. My goal right now is to work really hard in the next 2 1/2 years so that when he starts school no one will ever know what kind of struggles he's had.

Sebatian's OT appointment

Yesterday we had another OT yesterday with "Dr. Joann". He now gets really excited to go see her because it's so much fun. He was very focused which was good she got to see the lack of dominance in his sides. He doesn't cross over his body to color or to do anything. She gave me some tips on how to help us establish his right side as his dominant side. He's starting to jump from an inch of the ground. He's kicking better and communicating so much better. She says as we start to meet his sensory issues he'll develop physically and verbally. As I've said before it's like he's come alive. It's very cool. So needless to say the appointments are going really good.