School

Well Cole will be attending school for the first time this year. I am amazed at how fast the time has gone. I feel like it was the other day when Cole was being evaluated by Early Intervention. I thought the day would never come when we would say bye to his therapist from EI and we would be preparing for school. Cole's EI therapist have been such a big part of our lives and not having them here has felt like we are missing family. Thankfully I have cell numbers and Facebook pages for some of them and we can stay in touch.

As for the start of school I am almost ready with his belongings but emotionally I am far from it. I know that he is going to thrive in school once he gives it a chance but it will be a big change in life. We had our first IEP meeting which was not at all what I thought it would be like. We were in and out of the school within a half hour. Of course missing from his IEP is the OT that I was told they will be doing so I will now have to call the child study team this week. Also while i read over the IEP I noticed that its seems like Cole will be pulled out of class for a lot of things. I wonder if they really plan to pull him out or they just put that on there to remind them of what extra things he needs. I plan to make a list of questions I have for the child study team and ask when I call them. I also wanted to make a list of some questions I have for his teacher. We are suppose to actually meet with his teacher this week sometime. Of course I have no clue when since the teacher is suppose to call us. Hopefully I hear from her tomorrow. We also have a dry bus run on Friday since our school district buses the children. I was not going to put Cole on the bus but I know it will be a lot harder to drive him in and drop him off. He is very attached to me to say the least and I already know I will be crying his first day. My only concern is because is no verbal I will have no clue what is happening on the bus. My greatest fear is that something will happen and I will have no clue that something bad is happening. I have yet to hear anything bad in my district but still worry. I am hoping to find comfort when I meet his teacher and we do a dry bus run. I am also hoping that with school Cole will communicate more words, follow directions better and be able to sign, point or communicate when he wants something. I really have basic goals for him where the school has a lot of other great ones. My hope is we can handle this transition with no regression but my gut feeling is that we will regress before it gets better.  So how many people thought their first IEP meeting would be longer then it was? Did you feel all the goal set were all good goals? How do you feel about your child starting school and are you ready?

AEEG, VEEG, MRI, OT fight, Birthday

Things have been busy on and off since my last blog. I seem to have taken a break from blogging and just from everything it seemed except Cole. Since my last blog Cole has graduated out of the EI program, had an AEEG, VEEG, MRI, fighting insurance to pay for OT and most important Cole's 3rd birthday. As I look at the list ir doesnt seem like that much but the last few months have been so stressful.

First I would like to say that Cole's MRI has no change once again. We will still have to moniter the cyst and white matter but because there has been no change we will only do an MRI now every year.  My hope is that this is never an issue and we can hopefully only have to do an MRI if Cole is having any effects from the white matter or cyst.

Finishing EI was very sad. It didn't hit me until after his birthday. The last week of EI we had his 3day VEEG and were in the hospital for the begining of the week. By the end of the week he had only one appointment left and unfortunatly Melissa was sick. Had i known that the week before was our last week I might have tried to add more time. I know Cole misses it a lot and his days even though I keep him busy its not the same. EI was such a big part of our life and now its like an empty spot in our life. How many other people feel this way about their EI group? We were so lucky to have such a wonderful supportive group of woman from EI. I would like to thank Lauren (case manager), Noreen (DI), Melissa (DI) and Becky (OT) for all the help and support they gave us since COle was 15months.

As for the EEGs Cole had gone through, I hope I never have to do that again. We started with an AEEG which is a 24hr ambultory EEG. His neurologist wanted to do this so that she can make sure the regression Cole has was not from a seizure. We went through a problem with the hook up since the EEG depeartment thought it would only be a 40 min. EEG. Thankfully i fought long and hard and got him to have it for 24hours. I didn't want to have to repeat the test or have him hooked up while awake. I was able to have him hooked up for this one while he was sedated from his MRI. it worked out so much better.  After getting the results which showed a small discharge we had to go for a 3 day VEEG.  His doctor wanted to find out why Cole had the discharged and make sure we were not having seizures.  It was hard enough spending time wondering if Cole had seizures but then his insurance company messed up and put it in as outpaitant. We spent 4 days fighting to get him in for monday and for the insurance to fix their mistake. It was a long and stressful week. One i can say is finally behind us. As far as the VEEG it was a long 3 days at the hospital. Cole set the alamr off 2 times but thankfully it was only from the way he was pushing on a lead on his head.  I spent the 3 days with Cole while my husband stayed home and cleaned for me. Unfortuantly only one parent is allowed to stay and the hospital is over an hour away. SO the end report was Cole is still to be watched but she believes the discharge was from him pushing on the lead. I took it as good news and we now dont have to follow up until Dec.

Lets move on to the insurance problem that is still ongoing. After Cole started OT and has been going for a couple months we get a call from Children's Specialized Hospital telling us that his insurance no longer covers OT. I was caught off gaurd and was stunned since up to this point Cole's insurance covered almost everything and only problems we had were paper errors.  After a long fight which is still going on i was able to get the Hospital Help program to pay for OT.  The insurance is saying because Cole has Autism that its a chronic condition and that his policy doesnt cover chronic conditions. I am just stunned by this and feel like they are discriminating against children with Autism. Even though Cole has his OT covered i feel its the principal of them covering it that I continue to fight. SO i will try to keep up my blog and let you know the outcome of the fight.

Last topic was the biggest one: Cole's 3rd Birthday. It was wonderful. Not as many people there as the rsvp said was coming but it was nice. We had it at a park were the kids could play and just have fun. We did coldcut platters and salads and ended with cupcakes and rice crisp treats. It was a rough start since I ran lat all day but in the end the party was good and the kids had fun. The best thing about the party was Cole actually played with other kids for a little. He did go off to so his own thing but I was happy just that he had some interaction with other kids. All in all i think his party was a sucess and hope to actually have a smaller one next year for him and at a house that we are leasing with a backyard. The only bad thing about the park was it was not fenced in so i had to elect my sister to keep an eye on Cole while i set up and did stuff like that. I still cant believe that Cole is now 3 years old. The time has pasted so fast and makes me a little said.

I believe that sums up most of what has happened since I last blogged. I know that I didnt blog about the school evaluation but i plan to do that next. We are still in the process with the whole school thing but I would love to let everyone know the process we have been through. I will also update pictures of Cole's party and his EEG.  So what is new with everyone else? Has anyone else gone through the process of any of the above mentioned?

DDD and SSI

Well while on my break from blogging and anything else I could get a break from I started the process for Cole to possibly receive SSI and DDD. For the people who don;t know what they are SSI is Supplemental Security Income and DDD is Division Developmental Disability. My hopes in applying for both of these would be that Cole will be able to get funding to try different therapies like therapeutic horseback riding. I plan to make 2 separate blogs about the process I went through for these services since they were both time consuming and lengthy process. I am actually just passed the paperwork part and am moving on to the interview part.
SO how many have applied for either of these services?  Was there a service you applied for that was time consuming?
Until tonight when I have more time to actually go through the process.

Return

Well I seem to have taken time away from posting and just everything in life. I don;t know if I needed a break or if I just had nothing to say. So since I don;t remember the last thing I posted I figured I would update. Cole has regressed once again. His EI people believe that it was his motor planning that regressed and with that he lost his 2 words. I was sad but not enough to cry. I knew that this could happen but well I just hoped that it wouldn't happen. We went through a rough patch with all his therapy sessions. He would cry as soon as he saw his EI people and the therapy was just sad to sit through. He also became more attached to mommy if that is even possible. We have been able to get Cole in to out patient OT and PT and now we will have speech also. I tell you that every time i do an evaluation with Cole it breaks my heart. I get the reports and he is never close to what his age is. I would like for just one report for it to say he is at his age level or exceeded it. I hold hope for the future to one day get that kind of report. So Cole will finally be ready with outside services for when school starts.  We are also applying for SSI and DDD for help with Cole. It took a little whole for me to actually accept that Cole might need that help. Of course the paperwork is amazing. I feel like I will never get it done. The process just started and I plan to start blogging on that. I don;t know much but I would love to help anyone I can. Well hopefully I get back on to update and also let you know how the DDD paperwork is going. I hope everyone is doing good.

The Break is Over

I wanted to start by saying I took a break the last few weeks in hope to regroup from the home front issues. We spent a few weeks wondering what was going on with Cole along with having a bunch of testing done. Its funny how I will look at everything else that could be bothering Cole before looking at the problem of Autism. Well we finally got our answer which is that Cole has regressed. When y husband gave me the new I wanted to cry but my brain keep saying "You knew this would happen."  The day I found out I was at the dentist. I had planned to speak to his EI lady but had to leave in the middle of session for my dentist appointment. I figured I would speak to her the next day about it but she beat me to the punch. After the news I knew I had to take a closer look at what was going on at home and what I could do that might help Cole more. I tend to find ways to make my days busier then they need to be. I will pick up extra projects, do a million errors or just spend the day running. I decide that i needed to step back from almost everything. I knew i couldn't step back from work and Cole;s therapy but everything else would wait. So that's why I took a break from the blog and also from my social meet up group. My family is finally in a better spot as fair as getting back in the step with therapy and just having some down time with Cole. We changed our therapy sessions to involve my husband or myself to help Cole with demands. We finally had his OT appointment and we started the school meetings. My hope is to actually get Cole prepared for school with no more regression. So that is the update and although my hope was to blog more I feel like I might only be able to blog once a week. If i can do more I plan to but first will be trying to get Cole back to where he was. So how is everyone else doing? Is everyone ready for Easter?

Update of the past few weeks.

I am not sure when my last post was but things have been so crazy. I have been picking up some extra hours at work and trying to keep life straight at home. Over the past few weeks Cole has been off his game. He has been acting abnormal and started to worry me. We had times where he wanted no one but mommy to touch him, he wants to be held and not walk like normal, we haven;t heard mama or dada from him in about a month and his sleep has been off. We were able to get him in the doctors last Monday to discuss our concerns and hope for an insight of what might be going on. We agreed to try an antibiotic since 2 weeks before his appointment he had a fever for 2 days and that was it. His doctor wanted to make sure that the infection didn't linger. We agreed to give the meds 5 days and we would see if that helped. Unfortunately it seemed that nothing changed and then next thing I know he is holding his head and putting his fingers in his ears for long periods of time. This was unlike him and started to make me wonder if he was getting headaches from the cyst on his brain. Well Friday of that week came and I explained what new stuff was happening and to be on the safe side she admitted us through the ER for a CAT Scan. Thankfully the hospital visit wasn't horrible expect that we did the CAT Scan without sedation. I was good not to have to sedate Cole but was hard holding him while he cried so much.  The CAT Scan came out fine and we were off from there. I was glad that I no longer had to worry about the cyst but wonder what could have him acting weird. I continued keeping his schedule since we don't have a great one but wanted him to have some normal in his life as possible.  Come Sunday night after having a play date it seemed Cole had a stomach virus. So I know why Sunday he was not himself but we still haven't had any success with anything else. I did put a call into his neuro doctor. Hopefully she will shed some light onto what is going on. Has anyone else been through this? Do you tend to blame something in else in life before looking at the real problem?

Update March 2012

Well its seems impossible for me to be able to blog lately. I am either working or running around doing a million things and have yet to figure out how to blog on the tablet we got. Maybe its just that I don't type as fast as I would like too. The last couple of weeks have been like most therapy for Cole, work for me and just family drama along with trying to get Cole some play dates. We did do storytime at the library for kids with special needs. Cole loved the fact that the room was big and he could run laps. I did get him to draw a picture with the other kids so I guess I should feel lucky. Cole has also had some off days where he is sleeping a lot more almost like when he is sick and it seems like he is running a fever but not running one. I am not sure what is going and if it continues I plan to take him to the doctor. I just hate to take him since he is not a fan of the doctors since his EEG.  We also had a speech consult for this month and we plan on signing a lot more with Cole which means I need to start learning more sign language. I rented some DVDs from the library and need to try and make some time to watch and learn. Has anyone had to learn sign language for their little one? What does you days normally look like? Do you ever feel like you need more time in your day? I know this last question almost everyone feels whether you have a special needs child or not. I wish I had a better scheduled day so that I have time to do everything. Maybe one day I will figure that out. Also how did you get yourself on a schedule with your child if they need it?