Yesterday we met with Joshua's team of teachers at his school to discuss his progress and the plan for next year. It was a full room with his teacher, speech therapist, occupational therapist, physical therapist and school psychologist.
The good news is that they have graduated Joshua from physical therapy and speech therapy so he will no longer receive those services at school. On his testing he scored within the "normal" range and has met all of his IEP goals for the year in those two areas. This is consistent with the reports we have received from him private speech and physical therapists so I'm glad to see everyone is on the same page.
He will still qualify for services next year for cognitive, adaptive, reading, math, and fine motor skills. He still has a lot of short term memory and expressive skills issues that are making school difficult for him. He can only identify 1 letter of the alphabet and 1 number despite working on it all year. He cannot identify the letters in his name, not even the "J" after repeatedly working on it. In addition, he cannot follow directions from his teachers without being shown the activity and be given a lot of visual cues and help. Once he is shown how to do something a few times and witnesses it, he can then usually do the activity. However, for simple tasks the expectation in Kindergarten is that he can be told to do something and he can follow the directions - unfortunately he is not there yet. In addition, he still sometimes shuts down in class, refusing to participate or sits out by himself. He also still has low energy days at school where he won't engage.
Based on all of the above (and a few other things) they have recommended that Joshua attend Developmental Kindergarten instead of General Education Kindergarten. Although this was exactly what I expected based on earlier discussions with his teacher, it is still hard to hear the difficulties he continues to have at school when it is read aloud to you. I'm glad of the recommendation though because he does need the extra help and I think General Ed Kindergarten would have been way too difficult and stressful for him. He will be going to another new school next year as the program is in a different school with a different teacher. This will be a very difficult transition for him and I'm not looking forward to making the change either. He absolutely loves his teacher (Ms. Janet) and we do too so it will be hard to leave her. She has been so amazing to our Joshua and I'll be sad she won't be teaching him anymore. Ms. Janet will be setting up a time to take us to the new school to meet the new teacher and see his new classroom which will be great. I have a lot to update his new teacher on regarding the diet and his condition. I'm happy though that her classroom size will be very small (approx. 9 kids), she will have a para educator and she has a special education degree just like his current teacher.
I'm glad we had the meeting and that we now have the plan for next year as it has been weighing heavily on me. I'm a planner so I feel better just having a plan and knowing where he will be at next year. I'm extremely thankful for the great programs in our school district and that Joshua is able to get the help he needs.
Friday, April 26, 2013
Cheating..........and Seizures (we made it to 50 days)
We have been having a hard time lately keeping Joshua from cheating. He has been getting up very early in the morning before Chip and I are awake and getting into the refrigerator and eating whatever he can find. It is so unbelievably frustrating when we try so hard all day to keep him on his diet foods. We try to explain "why" he is on the diet, but I really don't think he understands. Since his seizures have only been in his sleep for so long I don't think he even knows he has them so he probably doesn't think anything bad happens if he cheats. It is weird because sometimes he can be so good and will find a piece of food on the floor and pick it up and hand it to me and say "I can't eat that", but then he will turn around and try to take food off of one of our plates.
I can't fully explain the heartache it causes to deny your own child food or to physically wrestle food they cannot have out of their hands, even when you know it is for their own health benefit. I often don't talk about it because I am so thankful for the diet and I KNOW it is saving him, but sometimes it is difficult. I think about what it will be like in the future (someday) to let him eat anything he wants and be able to take him out for ice cream. I know that sounds like stupid things, but when you cannot do it anymore, it is hard. I don't think anyone can fully grasp a change like this until they are faced with it and deal with it every day.
Although Joshua is 5 we have to treat him like a baby and not let him out of our sight. We can't even go to the restroom without making sure someone can watch him because he may try to sneak food. The minute I hear a bedroom door close I go running because usually that means Joshua has gotten into something and is hiding. It is a strange fear to live with, I have to say. Our cupboards are locked so he cannot get into the food and that has worked well. However, the refrigerator has not been as successful (Joshua has broken off two sets of locks already). We are now contemplating getting a bike lock and putting that on the fridge at night so he cannot get into food while we are sleeping. These are not thoughts that most parents have, but it is a reality in our house.
All of Joshua's cheating caught up with him last night when he had 11 seizures when I put him to bed. I was not surprised at all due to the cheating, but it was still heart-breaking. Our last seizure free stint was 44 days and this one was 50. I hope someday we will have longer stints, but it just did not happen this time. Today we started over. He is in such a better place than he was a year ago so I should be nothing but thankful, but yet, it crushes me every time he breaks his seizure free stints. I cringe knowing that his brain still knows how to seize and that he is not healed yet. I hope that one day his brain will be completely healed and this will all be behind us. I can't describe what it feels like to hold your child in your arms and watch/feel them have continuous seizures - I don't think it is something that will ever leave me.
I don't write this post so that people will feel sorry for us - I do it to bring awareness. Before Joshua I knew NOTHING of seizures or epilepsy and the pain that it causes and the toll it takes on a family. Now that I know I want to make sure I share this with others so people will have empathy and donate money for research and will not treat people with epilepsy differently. I'm appalled by how little research funding epilepsy gets compared to other brain disorders, yet more people are affected by and die from epilepsy every year than those other disorders. I have a lot of friends that I have met on this journey and they are all fighting for their kids, their families and their sanity - I want so badly to help them. If nothing else, help me spread awareness and understanding for those living with epilepsy and their families who live with the struggles every day.
Today we started over. We will continue to fight and hope for a life without seizures, medications and a restrictive diet. We will win.
I can't fully explain the heartache it causes to deny your own child food or to physically wrestle food they cannot have out of their hands, even when you know it is for their own health benefit. I often don't talk about it because I am so thankful for the diet and I KNOW it is saving him, but sometimes it is difficult. I think about what it will be like in the future (someday) to let him eat anything he wants and be able to take him out for ice cream. I know that sounds like stupid things, but when you cannot do it anymore, it is hard. I don't think anyone can fully grasp a change like this until they are faced with it and deal with it every day.
Although Joshua is 5 we have to treat him like a baby and not let him out of our sight. We can't even go to the restroom without making sure someone can watch him because he may try to sneak food. The minute I hear a bedroom door close I go running because usually that means Joshua has gotten into something and is hiding. It is a strange fear to live with, I have to say. Our cupboards are locked so he cannot get into the food and that has worked well. However, the refrigerator has not been as successful (Joshua has broken off two sets of locks already). We are now contemplating getting a bike lock and putting that on the fridge at night so he cannot get into food while we are sleeping. These are not thoughts that most parents have, but it is a reality in our house.
All of Joshua's cheating caught up with him last night when he had 11 seizures when I put him to bed. I was not surprised at all due to the cheating, but it was still heart-breaking. Our last seizure free stint was 44 days and this one was 50. I hope someday we will have longer stints, but it just did not happen this time. Today we started over. He is in such a better place than he was a year ago so I should be nothing but thankful, but yet, it crushes me every time he breaks his seizure free stints. I cringe knowing that his brain still knows how to seize and that he is not healed yet. I hope that one day his brain will be completely healed and this will all be behind us. I can't describe what it feels like to hold your child in your arms and watch/feel them have continuous seizures - I don't think it is something that will ever leave me.
I don't write this post so that people will feel sorry for us - I do it to bring awareness. Before Joshua I knew NOTHING of seizures or epilepsy and the pain that it causes and the toll it takes on a family. Now that I know I want to make sure I share this with others so people will have empathy and donate money for research and will not treat people with epilepsy differently. I'm appalled by how little research funding epilepsy gets compared to other brain disorders, yet more people are affected by and die from epilepsy every year than those other disorders. I have a lot of friends that I have met on this journey and they are all fighting for their kids, their families and their sanity - I want so badly to help them. If nothing else, help me spread awareness and understanding for those living with epilepsy and their families who live with the struggles every day.
Today we started over. We will continue to fight and hope for a life without seizures, medications and a restrictive diet. We will win.
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