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!!

Broken Heart…

A fat lip in need of ice…and not understanding that ice helps.

This is the dilemma I just went through. Tyler, in one of his temper tantrums, hit his face on one of his toys and caused a bloody lip. I had to pin him down in order to put ice in a washcloth to stop the bleeding. I walked away with a couple bites as well as bruises. But those don’t hurt as much as my heart. Tyler just doesn’t understand that I was trying to help him and not hurt him. This torture had to last for 5 minutes to get the bleeding to stop. I was afraid it might need stitches but he is ok. Unfortunately now he wants nothing to do with me, even though he did snuggle up on my shoulder. I fear he is scarred. I wish there was a way for him to understand.  

So he moves on and his playing with toys while my heart aches….

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!

And the saga continues…

I keep telling myself that SOMEDAY life will be just a bit easier for us. I left that message 2 days ago for the advocate. Still haven’t heard anything so I am going to call again. And school CONTINUES to be a thorn in my side about daily communication.

They have come up with a spreadsheet for certain activities during the day. They want to monitor the number of head banging incidents, biting incidents, etc that take place and during what activity. Everyone is trying to help him out which is great. What is COMPLETELY frustrating is they are trying to tell me its too hard to write down notes and monitor his behaviors when its one person with him. We like to have small notes if someone plays with him, or if he was particularly good/bad. Just little snip-its of his day so we can talk to him. We are not asking for the moon. I am having the hardest time trying to wrap my brain around their lack of cooperation.

I have said this in previous posts, what if this was their child? They would want the same thing or something similar. They would want to know what was going on with their child daily. Until he can fully communicate with us, we need something to talk to him about. I am not just going to pick him up from school, and not ask how his day was. I am not going to just ignore the fact that he was somewhere away from home for 3 hours. This really isn’t rocket science!!!!!!

I am starting to question whether this is the best place for him. Our other option is Perkins which is well over an hour from our house. This wouldn’t work on so many levels for him. He would have to get up so early to eat breakfast and get ready to get on the bus. Traffic to that school is horrendous and he doesn’t do well in traffic. He would be there much longer than he is currently and would be unproductive after a certain amount of time, especially given how early he would get up. And the list goes on and on. But I don’t know how much more of this daily bantering I can take.

I have to be strong for him and I know it is in his best interest to be there. I know that typically developing children can help him. I know that he isn’t the first nor the last non verbal child to go through an integrated preschool. I know everyone just needs to come to a happy medium and this will all pass. But we really need to find that sooner than later. My patience is running quite thin. And they do not want to see the angry Kelly. I may have a bit of an Irish temper that can get ugly if pushed too far. I am focused on him though and will try my damnedest to not let it get the best of me.

Oh Tyler, if only you knew what Mumma and Dadda go through every day to try and help you. I know how frustrated you get yourself because you can’t do things and you can’t get your point across all the time. My hope is that someday you know that we are trying our very best to make life easier for you. We want you to live up to your fullest potential and prove to everyone that you can. You have endured WAY too much in your 4 years. School and therapies shouldn’t be an added stress for you. We love you sweet pea. We will reach a place where life will be simpler and easier for you. I know we will. Until then, have patience with Mumma as I am frustrated people can’t see how important these little requests are that I am asking of them. I am frustrated that they can’t remove themselves from their jobs and see how these things can only help you. I am frustrated that they can’t see you are making strides slowly but surely. I am frustrated they can’t see how truly wonderful you are and that you aren’t a difficult little boy (all the time ). Keep being you sweet pea. Leave the fighting to Mumma and Dadda as you have fought hard enough.

And so the saga continues…

So we basically received ZERO information on what Tyler did at school yesterday. And yesterday was the day he stays in the room and doesn’t get pulled out. The communication specialist developed a FBA (functional Behavioral Assessment) form that the teachers leave quick notes. There were 2 things written on there and then in the notebook I have for more detailed notes, all that was written was “no services today.” YOU DON’T SAY!! We already are well aware. And since Tyler takes the bus home on Friday’s, no one was there to have a face to face conversation with the teacher and aide! UGH!!

I cannot even tell you home many times we have said we need to know specifics as we talk with Tyler about his day. We ask if he played with certain classmates to try and get a reaction from him. We praise him if it states he did something well. We talk to him about screaming and head banging if that is noted. I am not sure why this is so difficult for them to write down. ESPECIALLY on a Friday when they are not in a hurry to rush him off down the hallway to therapies. They have ample time. 

I wonder what they would do if this was their child? I wonder if they would let these thins just slide or if they would be upset and basically bitchy like I am? To quote one of my friends “FOCUS PEOPLE.” This is a non verbal, non communicative, globally delayed child. He can’t tell us how his day was. 

Thank goodness its Saturday and we have the weekend to enjoy our sweet little man.

Caught between a rock and a hard place.

Well it appears we are now in a situation at school that I guess I wanted but now I am not sure. Yesterday Tyler had a so-so day in is OT session. He was great the first half of the day, as that was in the classroom with peers. He worked through his frustrations in OT and managed to play on a computer while in his prone stander. I was so happy to hear that.

Then today comes. He couldn’t have been happier when I dropped him off. When I went to pick him up, I was greeted by his aide, the PT, and our communication coordinator. He was fantastic in the classroom again. He really enjoyed his friends, toys, etc. As soon as he was placed in his stroller for transition down to PT, I guess he lost it and never was able to calm himself down. He hit his head a lot, screamed, tried biting, the whole 9 yards. 

In June, we fought so hard to have the team come to the decision to leave him in the class on Friday’s so he can be a kid. Just so everyone has a better understanding, last year he was only in the class for the first 30 minutes. The other 2.5 hours were out of the classroom, alone with his aide and therapists. He never got close to anyone, the kids in particular, because I think he knew he was just going to be whisked away. Now he is in the classroom Monday – Thursday for an hour and 15 minutes before he has to leave and then all day on Friday’s. He is getting to know his friends and I think now, he really wants to be with them.

I am sick right now as there are so many things going through my head. Do we want to stress the social aspect with him? Do we want to stress the physical aspect with him? Are we asking too much from him? Is he really in the right place? I want nothing more than his world to be as easy as it can be. I don’t know how to do that right now. 

I guess I am a bit of a control freak and Tyler has definitely taught me that I can’t always be in control. Its hard to accept but its true. And when things like this happen, I definitely have a hard time accepting it. I feel like I am failing Tyler. 
I hope that I am  not scaring any new parents. Unfortunately this is reality of having your child in school. Its a constant battle. Its a constant struggle at figuring out what is best for everyone. Its just another harsh reality that things will always be difficult with a special needs child.

I am so glad Tyler is enjoying being with his friends and that they want to play with him. It really warms my heart. Now to try and make peace with the therapists and services that he so desperatly needs….

Where to begin….

The latest saga in fighting for my child happened today. My mother called to let me know how Tyler’s day at school was today, which was great except for one small episode of acting out. Great I thought. I knew he was excited to be dropped off. Then she asks me where he received the cut above his eye. I told her I didn’t know as he didn’t have that when I dropped him off. She said it was mentioned in his daily communication book that he did do a bit of head banging during his brief episode. When Tyler is frustrated, I may have mentioned this, he bangs his head. So he was doing this today. But no where in the book did it mention what he hit it on our how he received this cut. I was more than a little upset. Not only because he hurt himself, but because no one let us know how. And what it more upsetting is that last week, he came home with a huge bruise on the side of his face, from banging and no one let us know. I specifically spelled it on in the book I wanted to know how and on what he is hurting himself.

Last year he was banging his head a lot, especially toward the end of school. And only once or twice did he come home with a very small bruise. Nothing like what is taking place over the last week! So I immediately sent a message to our coordinator letting her know of this new development and how upset I was. She actually replied back less than a half an hour later after she investigated. Apparently he hit his head with one of his plastic toys while he was upset. The OT noted it was red but didn’t pay attention after that. Then she thought his aide had written a comment in the book while the aide thought she had. Apparently neither of them have heard the phrase “Never assume as it makes an ass out of you and me!” UGH.

So here I am, day 12 of the new year, already sending emails and messages to his team members. I am trying to not be over the top but come on now. Its not that hard. What if this was their child? They would want to know!

Again, I cannot stress enough the importance of being on top of everything related to your child. And speak up immediately. I am learning that people speak louder and more frequently than I do so its reassuring. But you have to do it. Is it the weekend yet????

Not starting off great

So here we are, our 2nd official week of school, the first full week, and I get hit with the news that they are switching Tyler’s Integration therapist. SERIOUSLY? It takes him a bit to warm up to someone. He like to get a feel for what he/she is going to to with/to him. So here he has worked with this wonderful woman for 7 days now and they are going to switch. We had no say in this. I am not happy at all. My hope is that this other girl is just as willing to do the things the current Integration therapist has been doing. She has no problems getting on the floor to play with him. She has no problems crawling under tables if that is where he ends up. She has no problem telling him no but not in an upsetting way to him. She has no problems doing the things we ask. So the saga continues. I just don’t understand why people have to make our already difficult lives, even more difficult…..