Services/ New beginnings

Cole has a list of services that we have elected to have on top of what the school provides. The list always seems like its never ending and I wonder sometimes when Cole gets to be a boy. There is a fine line between getting the help and letting him enjoy his childhood.  With that said I'm still trying to see where that line is. With that said lets talk services.
For school Cole has the basics: Physical Therapy 1 time a week, Occupational Therapy I believe 2 times a week and Speech Therapy 4 times a week. Cole is also on a trial for his Augmentative Communication Device. Right now he has an IPad with the Lamp program on it. We are 2 weeks in and I'm not sure what the trial will bring at the end. We started the process because Cole has had some self aggression and the Behaviorist at the school believe that this along with meds would help this aggression. It seems that now its more for function of Cole being able to get help if he is ever lost.  in this process Cole has had some aggression towards the tablet and that's what we are hoping to lesson. With all this going on PT has now told me that Cole needs outside PT and possible leg braces from his toe walking. It seems he is losing his endurance and that is now an issue. We are now working on getting into PT but its amazing how the waitlist for everything.  That sums up the school services
Home Services are different. We are currently involved with CMO (no clue what that stands for right now) which is working on providing at home ABA and we have Nurturing Parent (family counsuling) I am also part of the PPP (Public Partnership) program and home respite. Its amazing how many programs are out there that you don't know about unless you are connected with people who know these stuff. Once again when it comes to home programs its amazing how many hoops you have to jump through along with the lack of workers they have.  Currently ABA is waiting on techs so once Cole is approved we need to have that happen. PPP program was almost a year wait and a lot of messed up paperwork. Apply for that was a job within its self. Thankfully I refuse to give up on something that would help Cole. The PPP allows me to hire or provide service myself on helping Cole learn skills he will need for life. It was worth the wait but my hope when I actually write about it in a separate post that maybe it will help other parents apply to not lose hope.  Last service is respite and probably my favorite. This allows me to have a much needed break from life. It allows me to go out alone or maybe with friends. Without having CMO in the house I would have never known about the PPP program but am so thankful that they shared. I know being part of Preform care has other benefits but the important one for me right now is respite.  I'm pretty sure I went over all services Cole has. I know that that ABA is a new chapter along with this communication device. I cant wait to see what Cole takes too.
What programs do you have for your child?  When you tell other parents are they surprised about the program?  I've had mostly good feedback on the programs when talking to people. Of course there is always one who overhears and tries to spin it in a negative way. Remember to not listen to them, you know what's best for your child and what needs to be done.  

Return

It's been a long time since I wrote. I'm not even sure what my last post was about. I kept trying to get back into this but it's been rough. We had a lot of changes and I think talking about it made me realize we had some regressions. So I'm going to to be honest my goal is really to catch everyone up that checks this blog and then to help with the education on programs that we have.
Catch up time:
I'm now raising not only Cole but his little brother(yes I was crazy enough to have another) as a single mom. Dad is in and out and we are at the point of only video chatting for now. Cole is now 9years old and in 4th grade. He is in an autism class but goes to mainstream for elective classes.
I've jumped on the CBD oil for Cole and has helped so much with the migraines he gets. Oh yes cole has been getting migraines. The CBD oil has been keeping his migraines at bay and we are lucky for that. I will do a CBD post soon.
Cole has started having self aggression of hitting himself or punching his legs, or scratching. We called CMO which is a division of Preform Care (NJ Division of Developmental disability). We have had In House Support, Nurturing Parent and a advocate for mom (not sure what the real title is for this person).  I am so thankful for this support.  We currently are in the process of ABA therapy through CMO for home.
With that the two month we also have done the evaluation for a communication device and are now on our 4 week trial to see how cole does with it. I will be posting about this process in a seperate post. Along with Coles school PT talking about Cole starting outside therapy for PT due to toe walking. She has talked about foot braces and that it may be something we need to look into.
With all this I think I gave the cliff notes or quick notes on what ibe lacked on bloging over times.  I am going to try and do at least one blog a week with everything we currently have going on and the process we went through.

Cole is amazingly strong and has continues to show me how strong we are.
I look forward to growing this blog and helping as many special needs parents as I can.

♡♡ I am his voice, He is my heart ♡♡

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.

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. 

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.

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?

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?