Tuesday, December 9, 2014

Communication

Well this post took longer to write because I was not sure where I wanted to go with my post.  I finally decided to wait until after Coles parent teacher conference to write.  SO we have made big strides in this household.  Cole is finally talking!!!!  I am so proud of him.  His teachers, aides and therapist have made this all possible.  I work with Cole often but it seems that the techniques that his team has given us has finally started working.  Cole can say, spell and write his name. He can say Dan(his brother), milk, phone, please, and a few more words. He will try to say any word you ask. Sometimes its perfect other times its not even close. No matter what we tell him "Good Job Cole" which he has learned to say.  After talking to his teacher she is so impressed with how Cole has improved.  I spent years working on language with Cole.  We did sign language, PECS and also trying to help him sound out letters.  Its almost like a switch clicked on and he started talking more.  I can only imagine what doors this will open for us with Cole.  He might actually be able to tell me what's bothering him one day.  I know I am getting ahead of myself but I waited 5 long years for this and plan to enjoy every day. I am sorry this is short post but I will try to keep updating as changes come a long.

Thursday, October 23, 2014

Starting again

Hello
I spent a lot of time not blogging like I wanted to. We have had a lot of changes in the house and improvements.  Cole is a big brother which is first and most important.  He wasn't sure about it in the beginning but actually loves his brother more then anything.  We learned that Cole has migraines which stinks but we started meds. The meds have been a big help and Cole only has one migraine since the meds. We started getting Coles diapers paid for by the insurance. This is a big help to our family. We also got Cole a handicap plaque and it wasn't as hard as I thought it would be. Cole has learned to say his name and is trying to talk. His teacher this year has been amazing and I don't know how I was lucky to have 2 amazing teachers. Last but not least Cole seems to be learning to express himself a little better. He knows how to give kiss to mommy if sad and to get a parent when brother is crying. I can finally say things are going awesome with Cole.  Life is still busier then ever but we have managed to continue to work and adjust out house to try and help Cole communicate. I have a lot of different items to write about but figured I would start with an update about life. I am sure I missed somthings but will hopefully be able to remember while blogging. My goal is to blog weekly and see how it goes from there. I hope that who ever reads this enjoys and will ask any questions that you might have. 

Saturday, October 26, 2013

Start Again

Its been a long time since I blogged. My original plan was to blog daily or at least weekly but life is crazy for me and well I always put so much on my plate. SO I am back and hoping to blog as much as possible but I don't plan to set a goal for it yet.

So new things in Cole's life: We moved to Forked River and started a new preschool. Its so much better then his last school and the only complaint i have is that its part time. He seems to love his teacher and aids. My mom is now living with us. Cole is now on yearly MRI's which could change to 2 yrs if next yr we have no change. We got to skip the VEEG this year which was great.We started sign language since he is still nonverbal and doing great. Cole started potty training which is one of the biggest news we have. I am just so proud of him. Also come this December he Cole will be a Big Brother. YAY.

Its amazing at how much Cole has grown this year and also how much he has accomplished that has made me so proud. Since moving we are now finally getting on a schedule which is making life a little easier for Cole and actually me too. He has therapy 3 times a week. He goes to OT, PT and Speech. All of his therapist are on board and are signing to Cole in hopes to get him to sign the words and communicate with all of us. We have about 10 signs right now and can put together 2 words so far. This was picked up in a matter of 2 weeks which amazed me. Soon he will out sign me if I don't keep practicing.  Its amazing at what a child can pick up when he is eager to communicate. I just hope he is getting all the signs he needs to get his communication out. I still speak as I sign to him but all i get from Cole is his sign and sometimes some sounds. I have hope he will talk but just think he needs more time.

Cole's new school now has ABA, he is getting speech, was evaluated for PT and will get evaluated for OT next week. I went to his first IEP and got everything I asked for and more and on;y had to spend 10 mins with the team. I guess my only other complaint would be that I am still trying to figure out his speech therapist at school. She seems great when speaking to her but worry that its taking Cole so long to accept her. When he likes you he accepts you pretty fast so I am wondering what could be holding this relationship up. So hopefully I will get good progress soon from speech at school.

Cole's MRI this year showed no change and I have been assured that the White Matter Disease is really not a worry any more. Cole did great for his MRI and even seems happy when he was leaving the hospital. We spent a half a day and everything seemed to go fast. I am hoping that Cole will one day not have to get these done unless he has a problem that he can communicate to us.

Potty training was one of my happiest moments this year. I changed Cole's diaper and put him on the potty and seemed to take to it from there. We are still in pull ups but he will pull me to the bathroom to pee. He went from not interested at all to wanting to potty. I wish I could say we tried this or that but really it happened when Cole was ready. I am hoping to continue and by Christmas have him in underwear. That's actually a gift we are asking Santa for. I know its not fun but its something that he concord and I want him to get a gift for it.

Last but not least we are preparing Cole to be a big brother. I am not sure if he fully gets it yet but I am trying. This pregnancy has been harder then Cole's but this baby is acting like Cole did in womb. We are having a boy and Cole will have a playmate one day. I hope that he will love having a little brother. I often wonder how other autism parents handle having another baby. I know we decide to go for it because I didn't want Cole to be an only child. I was surprised to find out that we only have a 22% chance of this baby having Autism. I know people would wonder why I would take that chance but in all honest i love Cole autism and all. He has taught me to appreciate the small things in life.  Something i wasn't doing.  No matter what this baby ends up as I will love him just as much as Cole.

With that note until my next post. Enjoy life and appreciate the small things in life. Even small things should be celebrated.

Monday, October 15, 2012

School Year in full swing

Since my last post things have been so busy I haven't done much but make adjustments to life and just keep running. I am amazed at how well Cole adjusted to his first day of school and also proud. I worried about Cole going to school and in the end he loves it. Everyday daddy gets Cole on the bus with no fighting. He seems to like both his bus aids and we are getting great notes home.  He seems to be sitting more for class now and its following into home life. I have noticed great improvements. He follows direction better, listens most of the time, and overall looking for structure school offers. After the first 3 weeks of school I noticed his weekends were not structured enough and that he was looking for it so I am no in the process of giving him more structure. I am not a structured person so this is an adjustment for me but anything to make Cole's days better are what I will do.

I also noticed that since school went well and we had no regression that some behaviors have come back. He is back to chewing on everything. We found something like the zvibe for Cole to use but he seems to not want it. I plan to see what his OT recommends since we are back with this. He comes home with a wet blanket piece or his jacket is wet from him chewing on it. Hopefully we can get this back under control. Any suggestions are welcomed.

I also had a I hate autism moment this weekend. Cole and I spent most of Sat. visiting family. We started at one members house and ended at anthers. Normally Cole is pretty good with this arrangement since most of our family is an hour away. On our last visit Cole just seemed to be out of control and since my son is the first child in the family who has autism its a learning process for everyone. I try my best to educate and most of my family try to work with it. I have over the last few years to get parent advice or been told I have been a bad parent by people and I think with Sat. all those feelings came back up. I was offered advice and by no means was the person mean about giving it. They actually took the time to say that if they are doing something wrong to let them know. Unfortunately I am still learning what works and what doesn't. I value this person opinion in my life greatly and at that point just felt horrible. I wished Cole could have that normal childhood with out having to have me explain or educate. I started questioning my parenting skill and everything I do for Cole. I know by no means do I let him get away with being bad and try to discipline to the best of my abilities. I also know that if this person knew I was upset they would have never let me leave the house. I think it was just my weekend to be mad at the autism and needed the time to maybe find new methods with Cole. As i was writing this I started getting upset again. I know that i read about parents going through a morning period and then after that its goes from there but I think there will always be these days where i still get upset. Like everyone else he is my baby and i want nothing but the best for him.n Have you had an i hate autism moment?

Monday, September 3, 2012

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?

Tuesday, August 21, 2012

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?

Thursday, June 7, 2012

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.