Friday, May 13, 2011

School of emotions

I have mixed emotions today which may be hard to explain. We had Jude's meeting with his potential school today. We all got up and ready this morning to take Jude to "his first day at school". The wonderful teacher met us outside to guide us into the school. It was field day and they were concerned about the level of noise so they took us in a back entrance. I was impressed at their level of consideration. They led us back to a room where there were four other therapists/teachers waiting on us. I felt a bit flush as I walked in.....I am not sure why.  I wasn't aware they were going to do an entire assesment on Jude today. There was an occupational therapist, a physical therapist, a speech therapist, and a teacher. They all had their notebooks and all began asking questions. They were sweet to Jude and talked to him very nicely. Then they started asking about his skills......and this always gets us down.

Teacher: Does he roll over
 Me: No, but he did several times before his seizures started a little after three months of age
Teacher: Oh dear, yes that happens
Teacher: Does he grasp objects
Me: No
Teacher: Does he talk
Me: well he makes vowel sounds
Teacher: Does he sit on his own
Me: No

It went on like this for awhile. Charlotte and Mike answered many questions too. Charlotte was wonderful as usual and she made sure they knew Jude had a routine throughout the day. They laid Jude on his tummy and boy he got SO mad. They saw a full on Jude temper tantrum. Once we got him calmed down they put some objects in front of him. They had a Mickey Mouse Mirror that played music and I heard the PT exclaim, "Look he looked RIGHT at it! That's great". Jude then started moving his left arm trying to bat the mirror. Then the PT mentioned how she disagrees with the other therapist and thinks someday Jude will have better neck control. After they finished their assessment he was marked the way we figured. 0-3 months on everything but social behavior which is always higher. We then moved to where Jude's classroom would be.......and I just looked around. I felt tears welling up in my eyes and I swallowed hard to push them back down. I didn't want anyone to see I was upset. I looked at the little place cards on the desks and I realized Jude won't sit at their chairs. They explained how they have the children move their place cards up on their "chart" near the board to know what time of day it is. How will Jude even know what a place card is? It made me wonder if Jude is to special even for the special needs class. They did confirm that Charlotte would be allowed to be with Jude 100% of the time.

I bounced between emotions. One minute I felt like the teachers only have Jude's best interest at heart and the next minute I wondered what they could really do for him. Mike has also been on a tangent that "Jude doesn't want to go to school mommy". He also feels they may not be able to do much and is worried about waking Jude up so early to get him to class by 7:45. I am holding out hope that the Keto diet is going to work for Jude and therefore we can lower his seizure medications. Without the medications I am hoping Jude will be able to do much more than he can now. It was a bit overwhelming this morning.....honestly I still am. 

When we got home Charlotte placed a sleeping Jude in his snug bed. I went over and kissed him. I felt safe again that he was back in his familiar enviroment. I felt a bit teary again. Ashamed of myself that I felt robbed of a normal child while I was at the school. I love my Jude and I am very comfortable with who he is.


Maren said...

Hugs to you, just think school might be what Jude needs to shine :)

Anonymous said...

Dont worry I was told my son never gonna hold his head up, and he newer talks ,he is 10 now and boy his head is strait up and he talks more and more ,I wish I can bring his team up and show them how they been wrong , you have to belive in your son he is the cutes boy out there

Kim C. said...

This post really brings back alot of old feelings for me. It used to be so difficult for me when Ashley was assesed in school, especially those initial evaluations. I, too, became very sad when it seemed there was so much focus on what she couldn't do. Then came the final blow of hearing some one tell you your child, who you love dearly, is, developmentally, on the level of a small baby, devastating! I teared up every time. Looking back, there were so many things Ashley was able to do that just weren't recognized, or that she just didn't get credit for. I began to lose hope for her and myself. I eventually regained hope and tried very hard to be a better advocate for my daughter. It is wonderful that Charlotte will be able to stay with Jude. Oh, I wish Ashley could have had that kind of opportunity. As you know, it is so difficult to qualify for nursing services. She did attend school for several years, and the staff was wonderful with her, but the funding was limited, and the school was a bit run down. That, too, used to break my heart, because our children deserve the same priviledges and opportunities other children are given. We did the best we could at the time. She gained alot from her time there. It sounds like this could be a great opportunity for Jude, I say give it a chance. Jude has alot of potential, I can see that in his determined little face. If you later decide you are uncomfortable with this, there are other options. Just follow your heart and listen to your mother's instinct. Continued prayers.

Our Journey said...

follow your heart!! you can always change your mind later, you can put him in and take him out.. he qualifies for school until age 21!

Anonymous said...

All of those questions were unnecessary.

Probably good that you acknowledge all your emotions, and then you can decide what you want for him.