My Preschool Graduate

It is with mixed emotions that I post this blog today. Yesterday my baby graduated preschool! 2.5 years ago we were scared to death putting him in the public school. We had so many fears: would he be able to nap, will they know what he wants, will children play with him, will adults accept him for who he is, will he be snuggled if he cries, will he learn things like communication and motor skills, will be be accepted? Well we can whole heartidly answer “YES” to all of those questions. We couldn’t have been more fortunate to have found this teacher and this school system. Granted, we have had a number of disagreements but all in all, it has been a wonderful experience.

And now I sit here facing the same anxiety for the upcoming school year. Tyler will be secluded as mainstream Kindergarten just isn’t what he needs or will excel in. So now my fears are, will he realize he is alone, will he have the opportunity to play with typical peers, will he continue to grow and learn, will he still be accepted for who he is, will he resent us for not mixing him in with typical kids, is this the right program or should we be exploring other options? These are all things that I will have to stew over until he starts this program and we see how he handles it. Until then, I am glowing in the fact that my baby graduated preschool. My baby who wasn’t supposed to talk, walk, eat, roll over, survive really, has a diploma hanging on his wall. My baby has proved so many people wrong and continues to do so. My baby, walked to “Pomp and Circumstance” to receive his diploma. My baby is heading into Kindergarten. Where in the world has time gone?? I couldn’t be any more proud than I am today!

Before heading to school

Performance

Marching to "Pomp and Circumstance"

Receiving his diploma

Proud Mumma

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!!

Picture Day

Today was picture day at school for the preschoolers. This is always a chore for Tyler as he can’t look at the camera when the photographer asks him too. We always tell the teacher to have them flash the flash a few times as that gets him smiling. So I bring him to school to be greeted by the disgust of the teacher that I wasn’t staying. I said there was no need for me to stay, as I cramped is style 2 weeks ago by being there. I told her we don’t expect these pictures to be perfect. We know that its not going to be, though the last 2 years have been GREAT! She said that they would just have to try their best! Why they keep wanting to push him away is beyond me.

When I went to pick him up, his aide said it took quite a few tries but they think they got a great one. They must be able to preview them before taking the next child’s photo. I thanked her, as I always do for her patience and hard work with Tyler. The teacher came out to the hall, chasing after another child, and made a point of saying how many times they tried and how she even had to help but that they got a good shot. I smiled and said thank you. I can’t wait to see what these look like. I am sure they will be just as precious as always.  Ahhh, the drama!

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!!!!

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

And the battle rages on.

So Monday I was a basket case all day knowing they put Tyler in his safe room after I pointed it out to them. I couldn’t stop crying all day. My heart was breaking for him, and for all the other children that parents don’t fight for. For all the little children that fall through the cracks. I can’t imagine how many parents would have just accepted the message that we got since “the team” made a decision. I was literally sick all day because of this. I lost my will to fight.

Then came yesterday. I dropped him off and the teacher was pleasant to me, more so than on Monday. When I went to pick him up, a different aide had him. She is one who has had him before so no big deal. She tells me that his current aide “threw her back out” and had to go home. I said I hoped she was ok but really was more concerned about Tyler. He had a good day. Even participated in the class. They still took him to the quiet room, why I still don’t really know other than trying to prove a point, and he really didn’t settle down in the room. I was proud of him for that

Today we drop him off and the teacher is ALL in a tizzy. His aide indeed pulled her back trying to reposition him and is out of work for a week as she can’t lift. So of course we are wondering if this really happened or if its just a coincidence. It is possible that she could have hurt herself as he is quite fidgety and if you move the wrong way, yes it could happen. But his meeting is next week!

And since we are a member of the community and people talk, we found out that it one parent that has caused all this! One parent is complaining that his screaming, which last from 2 – 6 minutes that’s it, is causing her daughter stress. Its an INTEGRATED PRESCHOOL!!! This woman knew exactly what she was getting into. It amazes me that in this day and age that people are still so ignorant and rude.

Worried sick***Updated***

 

 

As I thought, Tyler was removed from the classroom at 9AM this morning and brought to his quiet room. So coincidental don’t you think?? Friday I remind the team that he has yet to be pulled out and placed there like we discussed in June. And the day he was supposed to be removed from the room and we protest, he is conveniently sent down there!!!! My heart aches for not only Tyler but the other special needs children in that school that they just don’t give a damn about. I am on a tear now. This isn’t going to be pretty! 

Well no one from Tyler’s team responded to my email from Thursday night. We walked into school today like nothing happened. All the while, I have worried myself sick, literally so I stayed home today. I am on eggshells right now waiting for him to come home. I want to read his sheets and see what happened today. As usual, he was happy to be at school. Should be interesting!!

On a side note, I spoke with the advocate this morning and she told me to forward the email along to the SPED (special education) director and request all reports and assessments that were conducted on Tyler that would have lead the team to that decision. Unfortunately I received an out of office reply from him. I am hoping where ever he is that he is checking email! 

The saga continues. I need a big bottle of TUMS to get me through the next week!