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.

Week of Ups and Downs

What a week we have just been through at the Brunetti week!

The week started so nicely with Easter. We had such a lovely day with our family.

Tuesday was Tony’s birthday. I had to take Tyler to a GI check up that went quite nicely. She gave him the green light to get off the Prevacid. This made us happy as he does not like Tony in the mornings when he has to take it. The day was capped off with me cooking Tony’s new favorite dinner Parmesan Crusted Chicken Tenders and Yukon Gold Potatoes. A girlfriend of mine made a FABULOUS coconut cake as a surprise. Tony had a great day and we were gearing up for Kindergarten Orientation the next day.

Wednesday morning, Tony woke up at 5:30 to take a shower. He screamed at me to get into Tyler’s room. Tyler was face down on his pillow, which is normal, but he was breathing very strangely, had saliva and blood coming from his mouth, looked like he was trying to throw up, and he was as limp as could be. I insisted Tony call 911 as I knew this was a seizure but he wouldn’t do it. He claimed he sounded congested. I asked him to call again as I was now cradling my sweet baby and he wouldn’t do it. This episode lasted all of 2 minutes, if that, and then Tyler was sleeping like a baby which I know you are supposed to let them do that. So we let him sleep and I went to orientation extremely upset that we can’t be on the same page when it comes to Tyler.

Orientation was ok. A lot of it I knew already since Tyler is already at the school. I went with my neighbor, who’s son is in Tyler’s class. When we went to pick him up, I lost it. I started to cry. These new moms must have thought I was nuts. But the key there is NEW moms. For the last 3 years we have been in the safe haven of preschool. Many of the moms have been there 2 years with us. The class size has been small and the kids are ok with Tyler. Well since prescshool is an option in our town and Kindergarten is not, we have about 70 new children coming to school. That’s 70 more parents to get looks from. That’s 70 more parents that may or may not talk to their children about Tyler and why he is different. That is 70 more children who may or may not have been exposed to special needs kids.  But what really hit me is he is starting Kindergarten in the fall. He is growing up so quickly. He has come so far but when I looked around and listened to all that would be happening during this milestone year, I realized that he wouldnt’ truly be one of those kids. It was another reality slap for sure and after the morning we had, I just couldn’t hold myself together. Thank goodness I was able to be in that safe haven of preschool to compose myself. I am not sure I am ready for this.

Tyler ended up being perfectly fine the rest of Wednesday. I had taken the day off as a vacaiton day and I was able to spend a lot of time outside with him as the weather was perfect. We went on the swing, played with bubbles, played with a ball.  It was wonderful. 

Thursday morning came without any issues with Tyler. I kept him in our bed as I wanted to monitor every move he made during the night. I am nuts I know. I just needed that comfort. Tony and I headed to school for an IEP meeting to discuss summer programming. I was ready to  yell, fight,s cream, whatever I needed to do to ensure they put him in 5 days. The past 2 summers he has only attended 3 days a week for 2.5 hours which isn’t enough. So we sit down, the team starts raving about how well he is doing now that he is on the new medication. They love how he is willing to participate, play with children, eat and drink. They, and us, were thrilled. So it came time to decide the days and the team said if he wasn’t there for 4 days that he would suffer significant regression. So it was decided that he will go 4 days. We were thrilled. AND, AND he will be getting music therapy every Monday during the summer for 1 hour. Why his other meeting couldn’t go this smoothly, I am not sure. But we were so happy when we left there!

Friday and Saturday were pretty uneventful. We played outside and Tyler was great. We had lots of fun together.

Sunday, yesterday, we needed to be up bright and early for our March of Dimes walk. The weather was very chilly so we decided to not take Tyler since he has been so sick most of this year, we didn’t want him out in that possibly coming down with something else. Well he wasn’t himself in the morning. He wouldn’t eat breakfast. He was miserable. He didn’t even want to walk to the car. So we drop him off with my Dad and go to the walk. We are 3/4 of the way through and my Dad calls on the cell that Tyler had another one of those episodes where he was listless, and saliva coming out of his mouth and then all he wanted to do was sleep. And that kid slept most of the day away.

Now one of the things we are unsure about is if stopping the Prevacid had anything to do with him throwing up yesterday and not wanting to eat. That prevents reflux. Tuesday was his last dose. This happened to us the week he had the flu. We had stopped it then 3 days later he threw up then was fine. Which today, he is PERFECT as we gave him the Prevacid again and he ate like a champ. So looks like we may have to stay on this medicine.

I am going to call the neurosurgeon to see what he may recommend we do for these episodes since the neurologist told us they definitely aren’t seizures but rather behavioral events. Stay tuned!!

Letter drop off

Well, our advocate has reviewed my letter to our team lead requesting clarification on a few items. The letter is 3 pages in length. I will hand deliver the letter tomorrow after I drop Tyler off for school. Should be interesting to see what her response will be to this letter. I am sure I will receive a phone call stating my questions/concerns are just too much and that she won’t be able to provide me answers. I can just hear her now! UGH. So stay tuned. I am sure there will be a good story to share.

Tony and I have actually talked a lot about the possibility of sending him to Perkins next fall. We are going to go check out the school and see what it is like. We have continued to get comments from the therapists that show they just haven’t been listening to us. The latest came from his PT on Thursday. She mentioned she has concerns that he is sitting in his Rifton Gait Trainer instead of standing to walk. We mentioned this concern oh 3 – 4 months ago that we were afraid that is what he would do. She never listened and now suddenly its a problem. Then the whole issue of allowing him to be in the classroom on his birthday with his peers. Its just starting to take its toll. I am sure they will not be sad to hear we want out. We need to do whats best for him. Yes a lot of the fights have been purely based on principle for me. But its not fair to Tyler and he needs to be somewhere where they understand him, where they will work with him, and allow him to grow to his fullest potential. That’s another story to stay tuned for updates on.

IEP saga continues

So, in Massachusetts, the school has 10 days to get the IEP to the family for review. Our IEP was HAND DELIVERED, not mailed, last week on the 10th day. I sent a copy to our advocate so she could review it as well. Let’s just say, as I am writing this post, I am writing a letter to our team lead that is 2 pages in length. I am asking for clarification on a number of items, the most important item being his service delivery grid where the teachers and specialists are really held accountable for their goals. His is completely inaccurate. So I am sure my good friend will not be pleased to receive my letter on Wednesday when I drop it off. There is no way I am signing off on this IEP. It is such a disgrace. UUUGGHHHHH!!!!!!

And we survived the meeting…

The meeting, to give you an idea, lasted 4 hours! We couldn’t believe it. There were times we battled back and forth but I was set in what we wanted and wouldn’t budge. Here are some highlights of the meeting as overall, I think it went well:

            ~ He is staying in preschool for the rest of this year. There is no longer any talk about outside placement.

            ~ He is being removed from the preschool room when he is happy, around 9:15 to go to his quiet room to work 1 on 1 with his aide. They are hoping to get back to keeping him in the preschool room until 9:45 and then transition him to his therapies.

            ~ We are going to extend his days, starting in January, as he seems to be craving more input and things to do.

            ~ We are creating, this weekend, a communication grid that is to be used consistently with all of us, my parents, Tony’s aunt, and the school. If we add a tactile symbol, we will let school know and vice versa. It was determined we should all be presenting items to Tyler in the same manner.

            ~ We are going to work on getting him back to using and recognizing 2 different communication switches.

            ~ We are going to be having monthly team meetings to make sure we are all on the same page and that his goals are being worked on.

            ~ We are going to focus on one strength a month to build on (hold a crayon, using the switches, using a different tactile symbol, etc.) so we aren’t throwing too much at him.

            ~ All the services providers requested an additional ½ hour with him as they want to do some cross over work with one another. This too was granted.

            ~ He looks to be going into a more life skills based program for Kindergarten. It’s a specific classroom with all special need kids, each one has their own 1 – 1 aide. They do get to participate in activities with their typical peers but its more geared toward the kids and their disabilities. I am going to check it out next week. It sounds like what he needs to be honest.

            ~ Lastly, we need to reconvene in March to determine what his summer schedule will be like. I asked if he could attend 5 days, to teach him consistency, and was told by the team chair that was impossible but the other members of the team thought it was a good idea.

 

So it was a lot, and I am sure I left some stuff out, but it went well. They were pretty defensive when we first arrived but by the end, definitely had a different tune. Now we see if they actually do what they said. Here’s hoping!!!!

Tomorrow is the big day…

Well the time has come, IEP Day, is tomorrow. Please keep us all in your thoughts and prayers as it is a very stressful day for everyone. I will be sure to post a recap after we are through.

Vision Statement

I wanted to share with everyone how a vision statement should read for your child’s IEP. This was taught to me by our advocate that we just recently hired. Last year, our vision statement for Tyler read as follows:

                                 “We would like to enhance Tyler’s communication and have Tyler live up to the best of his ability.”

Sounds good. We thought that was kind of spot on as we are really trying to work on his communication skill. Well this is what his vision statement is for this year’s IEP:

“We look forward to Tyler’s continued progress over the next year as well as his transition to Kindergarten. Goals that we would love to see Tyler accomplish over the next year include:

• Communication: We would like to see Tyler develop skills to both initiate and reciprocate exchange of conversation. This will be accomplished through sign language, visual cues, and his communication switches. The ultimate goal, of course, would be verbal communication.
• Behaviors: Tyler will be more responsive to requests placed on him by parents and caregivers. The ability to express needs and desires will assist in lessening Tyler’s frustrations when he doesn’t understand or want to comply with requests.
• Walking: We would like to see Tyler get to the point of walking with his walker in the classroom setting under his own power.
• Social Skills: We would like to see Tyler continue to increase successful friendships with classmates and neighborhood children. This has been a joy to watch develop over the last year.
• Fine Motor: We would like to see Tyler return to using utensils during mealtime. We would also like to see Tyler independently hold a crayon and/or paintbrush.”

Quite a difference no??? The advocate explained to us that the vision statement and the list of parent concerns is what really drives the IEP. Can’t wait to drop this off at school tomorrow for them to see

Not going to know what hit them.

Tony and I had the most AMAZING meeting with our advocate yesterday. She was at our house for 5 HOURS!!! She reviewed all of Tyler’s paperwork from the last 2 years at school and gave us hints on how to prep for Thursday’s meeting. I will post our vision statement from last year and our new vision statement for this year. What a difference. I learned that the vision statement and parent concerns section is what really drives the IEP. Looking at all the information, she reassured us that they didn’t have any reason to be kicking Tyler out of his integrated preschool room. She pointed out how they actually haven’t exhausted all ways to try and work with him. I was not feeling good about our meeting at all last week. Yesterday put a renewed hope in my mind. I am now anxious for Thursday to not only see their reaction but to see if we do come to an agreement on Tyler’s IEP. Stay tuned

Just when we thought things were fine….

Tony and I get home from work last night to a MESSAGE on our answering machine from our case coordinator. She leaves this total BS message that the team met on Tyler and have decided that is behaviors are becoming intolerable for class. WHAT?? Where is this coming from?? Our daily communications sheets have said nothing of the sort! On the contrary, he is showing improvement. He is getting settled back into his routine and is doing well. Does he have his moments, sure. But don’t all 4 year olds????

So I proceeded to write a very detailed message back saying we didn’t agree with their decision and we will not be doing any of the suggestions until we meet as a team. Our meeting is scheduled for October 16th. I let them know that I will speak with the Director of Special Education if I have to. Which I honestly think I just might do. This is complete and utter BS!!!

They don’t want him there because he is more challenging than other kids. Please. They get paid to think, so what if it has to be outside of the box at times. I am just not able to wrap my head around why they would be so judgemental and unpassionate about this.

We are blessed to have a wonderful network of parents and our family to support us through this. I will certainly be calling on a few of them to attend our meeting in 2 weeks. Plus we will now have the suport of the advocate to help us out. They have honestly messed with the wrong girl. They have pushed me as far as I can be pushed. They will be getting push back in a MAJOR way.

I haven’t heard anything back from my email. I have a feeling they are all trying to figure out what to do. Right now, they have no choice than to do what he has been doing until we meet. UGH!!!