Advocate. Advocate. Advocate!

Tyler had his IEP in November and it do NOT go well. Especially since we didn’t bring an advocate. He was doing really well and we thought we were in a good place with the team. We had another meeting today because we had rejected portions of his IEP. Here is an update. I actually posted this on Facebook earlier.

I know a lot of you care about our little guy so I will share the update. Brief background is we asked in November at his IEP meeting, to start lengthening his day at school to prepare him for the fall when he will be a first grader and expected to be there all day. He has been going to school for only 2.5 hours a day, 5 days a week for the last 3 years. We were denied this as we were told his needs were being met in that time.

I contacted my friend Amy, who is an advocate and asked her what to do. She enlisted her advocate friend Beth and together formed a great team! Beth drafted a wonderful letter that I turned in with his rejected IEP and addressed a lot of our questions but using language that schools do not like to see like laws, and placement rights, etc.

So we met today and low and behold Tyler has a completed updated IEP that included a plan to start lengthening his time. Granted we still are not starting it now but its a plan. There are definite pros and cons to starting him now as opposed to the fall. The summer really throws this off and everyone is concerned that would confuse him. We have 2 plans that will be stated in the IEP. We will either start him off in September staying an extra hour and then build it up another hour in October and then full day by November 1st OR just put him in all day the first day of school and just have him realize this is what is expected and deal with his behaviors as they happen. We have the luxury of deciding so that is nice.

While we are satisfied with the outcome, it still pains me that families have to go through this. Just because Beth typed this letter and was there today we had a lot of questions miraculously answered. While, in November, while Tony and I were there alone, we felt completely isolated and alone and that we had no rights. Its so disheartening to know families take the team word and don’t fight for what they are entitled too. Its not fair that we as parents of special needs children have to fight. We fight every day for these kids, emotionally and physically. We shouldn’t have to fight for a fair education when that is what they are entitled too! Its not fair that things can’t be communicated entirely to the parents when an advocate isn’t present as opposed to when one is.

My gut is telling me something that I don’t like…

As you know, Tyler was diagnosed with partial seizure disorder last February. We put him on Trileptal and that really helped. Well around Christmas he started having more episodes and I called the doctor as I was sure he just needed his med increased, as he has grown and it hadn’t been increased in 10 months. He agreed so we increased it. Well then he started having these more severe type episodes first thing in the morning during breakfast. But my little tiger would sign “more eat” as soon as it was done as he knew where he was and what he was doing before it happened.

So again, I called the doctor to see if we should increase just his nighttime dose. Again he agreed, so we did that. That didn’t change anything. This brings us to last week. So I called again and he said to increase both dosages. So I did. Nothing changed over the weekend but he also came down with a nasty cold and I know seizures increase during the on slot of illness. He went 1 day with nothing, next day with multiple, 1 day with nothing, next day with a couple. This morning he had a terrible episode in bed, went back to bed. Was eating breakfast, had another one, then had another one while playing on the floor. His teacher just emailed to let me know she had sen my note and to know that he had a very small episode at 8:30.

We have an appointment on February 11th. I have done research on this and I have this sinking feeling that what he suffers from cannot be treated with medication. While that is good because I hate to be giving him something unnecessarily, it breaks my heart to think we have to watch him go through this for the rest of his life. I do not know what it feels like to go through this. And just so you know, the longest one of these has lasted was 20 seconds. So we aren’t talking minutes, its just seconds. But when your child clenches your hands, has his eyes wide open and is looking at you, and is shaking, I know my heart and body ache. These next two weeks are going to be the longest 2 weeks of my life. I just want answers. But my gut is already telling me the answer. I guess I just need to hear it for myself……

Calling all Facebook users…

I know some of you who follow this blog are friends of mine on Facebook so this will be a repeat message. But for those of you who are not, won’t you consider posting this as your status update today:

“My wish for 2010 is that people will understand that children with disabilities do not have a disease; children with disabilities are not looking for a cure but ACCEPTANCE, they are so incredibly DESERVING and full of LOVE……..Copy and paste this to your status.”

I couldn’t have said it ANY better myself.

Through my child’s eyes

Each month, Tyler’s teacher sends home a sheet that she entitles “Proud Parents” and there is a topic on the sheet that she wants us to write about. She puts these in books and at the end of the year, I guess we get to take them home and keep them. It is to let the kids know how very proud we are of our special kids. This month’s topic I felt hit home, as most of the do, because this was something I think about daily… “Through your child’s eyes”… I thought I would share what I wrote :

“Since Tyler cannot see, we have learned to see the world in a whole different way. We have learned to appreciate all the little things. It brings us such joy to see a smile on Tyler’s face when he discovers something new or when he finds his favorite toy(s) and starts to play. We know that he appreciates everything life offers him every day. He doesn’t take a single thing for granted. One cannot truly appreciate life until they have a child like Tyler touch them in some way. We know our lives have forever been changed, and for the better.”

A story about a boy and his chair.

We bought this Rifton chair just about a year ago for Tyler. He used it daily at school and didn’t mind it at all. We thought it would be great to have at home to try and have snack in, play in, watch tv in, etc. Well, as you can imagine, in pure Tyler sense, he hated. Screamed every time he went into it. Would bang his head on the tray. He really wanted no part in it. We tried for months to put him in it and teach him it was ok to use it at home as well as school. We even brought him outside on our deck in it one sunny day. Nope. Still hated it. So we tucked it away and piled things on top of it thinking how much of a waste that was.

Well the 3 of us were home this year between Christmas and New Year’s and one of Tony’s goals was to get Tyler back into this chair and doing stuff. As they say, pictures speak 1,000 words:

*** Pardon the dirty shirt. This was right after lunch

Needless to say, this is now part of our daily routine. Since it is on wheels, we have even brought it with us over to our family’s house so he has something to do. Great job Tony!

From my house to yours

I want to wish each and every one of you a very happy HEALTHY holiday!!!!

I am grateful for….

I am thanful each year for a variety of things. This year I am most grateful for the fact that I have a wonderful family, a loving and supportive husband, a son that inspires me every day, and a host of amazing friends.

Wishing all of you a very Happy Thanksgiving!!!

My birthday wish

My birthday is on Monday but I don’t think it’s too early to have a wish…

To my sweet little man. I say that with a tear in my eye as your 6th birthday approaches on Tuesday. It can’t possibly be true that 6 years have passed that you came into this world, and almost left us all in the same day. And it can’t be 6 years already that you almost lost me as well. But we Scorpio’s are tough Peanut. We are tough, strong, and to the dismay of a lot of people, stubborn. And that stubbornness gets us through the tough times. And it has gotten you through 6 years of your life.

So on Monday, though I know it’s not good luck to say your wish out loud, my birthday wish is this:

~ may you continue to be strong and hold your head high.

~ may you continue to show people that there is nothing wrong with being different.

~ may you continue to teach me and all of us to appreciate each and every day and each and every moment.

~ may you continue to teach me and everyone else around you to love the little things and life. Stop and smell the roses isn’t just a phrase for you. I have learned to appreciate these little moments so much more since I have to describe them all to you since you can’t see them for yourself.

~ may you know that no matter what, I love you more than I could ever tell you or show you. I may get upset sometime but it’s because I am still angry that this happened to you. You should be able to get excited about having a birthday party, you should get excited about having a play date, you should get excited about going trick or treating, and you should get excited about the magic of Christmas. And it makes me so sad that you aren’t. You were robbed of these childhood rights of passage for some reason.

But I am so proud of you and so honored to be your mother. I know I don’t slow down to appreciate things as much as you want me to. But I am working on it. Together, you, me, Daddy, and the rest of us will slow down and appreciate everything around us. We are still learning and still trying our hardest to do our very best by you. So please be patient. We will get there.

So for you my baby, and I only have 3 more days to really call you that, on Monday my birthday wish to you for your birthday, is to keep being who you are. You are the strongest, bravest, most amazing person I have ever met. I am honored to be your Mumma. I want you to keep proving everyone wrong. And even if you don’t accomplish all that I hope you will, because again Scorpios are stubborn and DON’T give up, I am so proud of you and how far you have come. I love you handsome. I can’t believe I am saying this already but Happy 6th Birthday. All my love.

Mumma.

 

Tyler at 4 months old with his “Mommy’s Little Tiger” overalls. I thought those were quite fitting for him as I call him my tiger. I still have these tucked away in my clothes bin and get to see them twice a year when I change out my clothes for the change of seasons.

 

Almost a bad day…

But not with Tyler. With the most important thing to start my day.

 

 

Yesterday I had trouble pushing the on button to get the wonder pot of coffee under way. I thought it was a fluke but was happy once it got going. This morning, I poured the water in, measured out the grinds, closed the lid and hit on. And hit on again. And hit on again. I repeated this step a half a dozen times. I was ready to cry. I must have a cup of nice warm coffee to get me going. This could not be happening I thought. Not on a day when I didn’t have time to stop for a cup on my way into work. So, I thought of plan B. I grabbed a knife and pressed the button. And viola, the air was filled with fresh brewed coffee. All was right in my world. And the best part is, I get to go shopping tonight for a new coffee maker. Stay tuned to see what I get

I’m Back

I cannot believe that 3 months since I last wrote. Where has the time gone???? Let me give a quick recap of all that has taken place.

School started in September and much to our hesitancy, it has gone terrific! He absolutely LOVES to go to school. He is so happy and so excited when I pull into the driveway. He is so bored ont he weekends with us, which makes me sad but happy at the same time. I am so glad he adjusted so nicely to the new surroundings. He is in the same school but now spends most of his time with strictly the special needs kids. This is where we were concerned but the change in him is so dramatic. I think he was actually overstimulated with the typical kids. The kids now, granted a lot cannot talk to him as they are non verbal,s till touch him and play with him and interact with him. There are 12 kids in the class and each child has a 1 on 1 aide. It’s so great. He is doing art projects now, and sitting for stories, he makes weather charts, he really is excelling in his therapies. I cannot talk enough about it.

Of course on the flip side is the struggles that we still have. Very little communication coming home so we know what he did during the day. We were only finding things out when we went to pick him up. So those issues just never seem to go away. And we STILL have issue with ST. She is supposed to see him 3 times a week for 30 minutes each session. She decided to piggy back on his OT time which is unacceptable. She claimed she didn’t have any other time in her schedule.

Next Friday, the 13th how ironic, is his IEP. We are calling her out that she needs her own time with him. His aide, lead teacher and our communication’s coordinator all agree. And I have it in an email that they agree so if someone says otherwise next week, I have proof of them agreeing with me.

But despite that, we are so happy and relieved to have him in the program that he is in. You can’t imagine the stress I had every day dropping him off. I would get sick to my stomach because of the tantrum he would throw. It pained me to leave him. But now, we sing, we laugh, he pushes me away when he is ready (which is fine as I know he is so happy). And his smile that he has when I leave just makes the whole morning happy!

Healthwise, he has been ok. He has suffered from a few colds since the start of school but nothing super serious. unfortunately yesterday it was announced that swine flu is in the building and I think particularly his class. When you have a room full of children sneezing and coughing and don’t understand at all to cover their mouths and noses, its bound to happen. So I am scrubbing everything daily and making him change his clothes as soon as he comes home. My parents are doing this as well. He cannot get the H1N1 shot due to his egg allergy. The shot is made with an egg base, similar to the regular flu shot, and he can’t get that. Not that we are able to get either shots right now with the shortages here. My mother, who is an RN, cannot even get it and she was supposed to. They only have enough to give to pregnant RN’s. She explained how she takes care of a high risk child and that still didn’t qualify her. It’s pretty scary. I am holding my breath but I don’t think we are going to escape it.

Other than that, things are ok. No major accomplishments but no major set backs. All is right in the Brunetti house.