Catch Up

I know I said after Christmas I was going to make this post but once again life got in the way. So in November Cole went for his 6 month MRI to look at the white matter again. My husband and I were hoping to get the news that it had improved and it was no longer a worry that Cole could have White Matter Disease. Unfortunately right before Thanksgiving we were told that there was no change in the MRI. Since we have a great neurologist she wanted us to send her the MRI to have the hospital she works at look at them again. Since there was no change I didn't rush this time to send the scans. Looking back I wish i did rush them out. We had our appointment in December to evaluate Cole's autism and I was also hoping to go over the scans and to see when his next MRI would be. Well at the appointment the doctor proceeded to tell us that she would be looking at his MRI that Friday and that she wanted to see where the cyst was. Apparently the report stated no change in MRI with cyst on brain. Cole's first MRI didn't show a cyst so this was just heart breaking to us. It meant that I had one more thing to add to my list of worries and things to watch out for. I still don't understand why the hospital Cole had the MRI at had not red flagged this so that his neurologist would look at this first. Thankfully the news came back that the cyst is not pushing on anything in his brain right now and that we would monitor it. His next MRI will be in a year but as I right now I am thinking of asking to have one done at the age of 3 for Cole which will be in 6 months. I wish I could blog and say the appointment went great and we got great news but it seems that we keep getting bad news or I should say undesirable news. The up side to the appointment is that Cole showed better eye contact and responded to his name the first time the doctor called it. I was so proud at that moment with him. We are also saying mama and dada a lot now. So that is the MRI update that i promised I would write. I remain positive that this will  all work out but I know that as a mommy I will continue to worry. Just a heads up for my readers Cole has an OT evaluation through EI on 16th of January. I am hoping to blog that day about it but if not the next day. I also plan to blog more for the new year. I connected this blog to a facebook page that I hope to add pictures of procedures and evaluations. My hope is that one day I will have helped another family that struggled to find answers. So my New Years resolution is to stay positive, blog more and try to appreciate the smaller things in life. What are your New Years resolution? Do you plan to make any this year?

After Christmas Math

Well as much as I tried to get online t post it didn't work. We spent the day redoing Cole's room to fit his new toys. Cole could care less that he had presents under the tree. I pretty much had to force him to sit with me to open gifts. We took no pictures because it took over an hour for a few gifts. My goal with the Christmas gifts was to get him things that were fun that could also help with his therapies. His gifts were puzzles, Mr Potato head accessories, bouncy ball pit, some books and play dough. So yesterday was a day of cleaning his room and going through clothes so we could fit the bouncy house. Cole also got a train set from my sister which came with the table so we had that to put together. After all day and a few stops at the store Cole has his dream room it seems. He actually napped in his room which he hasn't done in awhile and he was in and out playing all day. My hope is to actually get him to sleep in there soon. I figure one step at a time. Now if only I could get the rest of this place clean I could be happy.  Cole has a week off from EI which means that I have a week of trying to work with Cole. I can safely say I did nothing with his therapies yesterday. With all the work I do and the also working with Cole I decide its time to go back to school and possibly get certified or a degree to help other autistic children and their parents. I learned this Christmas that everything I did was more for me and not for Cole. I loved Christmas and wanted Cole to love it too but truthfully he really just wanted to follow his normal day. So I decide next year that I will not work so hard to make tradition but to just enjoy my day with him. I plan to take every holiday this way now. So how many parents tried to make Christmas more for their child(ren) and you were more excited?

Merry Christmas

Its been awhile since I have been on to blog. My new years goal is to actually blog more and to try and slow down a little. It seems that since I can control how much I work i have become a little obsessed with it and have been working a lot more hours. Which is also the reason I haven't blogged. Also a lot has happened since my last blog which is Cole had his MRI, we found a preschool he loves but isn't accepting until Sept. and the holidays are here. I promise I will blog tomorrow on all of the business we have had in our life the last couple of weeks and also how this holiday has gone.
So to anyone and all that read this blog....Merry Christmas and Happy Holidays.

Meltdowns with change

It seems lately Cole has either been testing people to see what he can get away with or we have had major meltdowns. This last week I was kicked out of the EI session because Cole was using me to not have to do his work. I was more then happy to walk away since I know that after the session they will inform me of everything they did. It was hard listening to him cry but I knew he was crying to get his way. Recently I went back to work and the started a second job which is suppose to be per diem. The per diem job has me training so I am putting in 2 or 3 days with them and then working my full time job. I don;t know if things changed to fast for Cole and he is having a hard time adjusting to it or if he is just being a 2 year old. What I do know is last night he had one of his worst  meltdowns. It happened when he woke up and it lasted about 40 mins. I tried everything from making him a milk cup, changing his diaper, giving him a snack and trying to turn on a show he likes. It felt like it was never going to end and when it did i think Cole and myself were drained. I plan to really look into different things that might help with meltdowns along with reducing my schedule at my per diem job until Cole is well adjusted. So my question to everyone is have you dealt with meltdowns? Do you have any suggestions on how to handle the meltdowns or make it pass faster?

MRI Results

We it has taken me a few days to actually blog the results of Cole's MRI. Although it was not horrible it was still not the results I had prayed for. His MRI shows no change which means we are still at risk for the White Matter Disease. Although the results were not bad and it was better then them giving him the diagnoses of white matter disease I still broke down. I am at a point in my life where I am wondering how much more Cole has to go through.  I know that their are other children in this world that have to go through worse, but as Cole's mom I never thought this is what our life would be. I want the best for my child like most parents do and sometimes wonder why Cole. I have to say the support of friends and family was great and although I am still sad I am trying to just not think about it too much. Of course in December I will have to speak to his doctor and decide with her when we will repeat the MRI and pray until then that we can finally rule this out. I want to end this blog with the chores of Rascal Flatt song My Wish:
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

MRI

On Monday Cole went for his 6 month MRI to rule out White Matter Disease. White Matter Disease effects your muscles and speech and so on. When he had his MRI to rule out autism they listed it as a possibility that he could have it or it could be his age. We are hoping its his age and that this one will show that everything is fine. We are awaiting the results very patiently but I am hoping I get them today. I was hoping to write on Monday about the process and how great Monmouth Pediatric Day Stay unit in NJ was.

MRI Day: Cole was due at the hospital at 9am and had to stop eating at midnight the night before. He was allowed to have some water or apple juice before 7am but Cole is never really up that early. Cole did wake up at 7:30am and was looking for food and his milk but he was easy to distract. We got out of the house at 8 and was at the hospital by 9am. I believe we had the same nurse as the last time we were there. As soon as they had to start taking vitals and listen to his chest Cole flipped out. Ever since his EEG and being in the hospital he just doesn't like any medical people touching him. I was able to ask the nurse for the oral med that helps kids relax and they don;t remember the procedure they are having. I don;t know the name but if you have a verbal child they might start slurring their words and walk funny. I am hoping this helps with Cole getting over his fear of medical personal. Next was IV time. Since he had to get an MRI with and with contrast he needed this plus his sedation was going to be given through this. Once the IV was in the nurse let me carry him to the MRI room. The technicians were great there. The one told us his child had to go through this and told us what we could expect when the sedation was given. Cole was put on the MRI table and the sedation process started. For anyone who has not had a child IV sedated let me say you want to cry and are happy they wont remember anything all at once. I was able to hold his hand while they put him out and got him set up for the MRI. He had to be monitored by an EKG and they had to put the bars up for him to be set up in the MRI machine. Once they were set up it was time for us parents to leave the room. The one technician told us he would keep us posted on how he was doing and how much time was left. It felt like hours had gone by when really it was 45min. I was told by the doctor, nurses and technician that Cole did great. they also were able to take his IV out before he woke up so he really wouldn't remember it at all. I was so thankful for this.  Since Cole was not still coming out of sedation the nurse let me carry him back to the day stay unit. All seemed like it was going well he was slowly coming out of sedation and was really thirsty. We had 4 small containers of apple juice probably before we actually made it out of the hospital parking lot. I of course stopped to get him something else to drink and we made it home. Of course looking back I wish I would have slowed him down on his drinking because when we got home all the juice came back up. Not only did we have that but we also had a diaper explode because he had diarrhea.  Once that was through his system it seemed like he was back on track. He did crawl for most of the day because when he walked he looked like he was drunk. All in all I think the day wasn't horrible. Even though the day was not horrible I am hoping this is our last MRI until Cole can understand what an MRI is. I have to say thank you to the wonderful nurses, technicians and doctor from Monmouth hospital. They really helped us a lot with making this the best trip that it could be.

If I don;t blog on Happy Thanksgiving To Everyone.

Rough Spot

I feel like every so often I hit a rough spot and need to get renewed in the dedication I have to help Cole.  Don't get me wrong I am always doing something to help Cole but I do have days where I want to curl up in bed and cry still. It always starts with will Cole ever really talk and then I start thinking about his future and what will happen. I just want Cole to have a life he can enjoy and where he doesn't get picked for being autistic. Every day you can see this light for loving life in his eyes. I always hear what a happy child he is and I just want that to continue through his life.  I want to keep the hurt and nasty people away from him as long as I can. I know that he will have to deal with it one day in life but the longer I can protect him the better I will feel that I did a good parenting job. I want Cole's life to be as perfect as I can provide for him. I want him to experience the joy of holidays and family traditions. My wish for Cole is that I give him the best childhood he could ever ask for and that one day he will be able to tell me that. I found this autism awareness video that actually expressed how I felt and how even though I have mourned the fact that Cole has autism its an ongoing battle for me. I accepted who Cole is and that autism is just a  piece of his character but it still upsets me to think of his struggles in life. So I wanted to share this little video and ask how many other parents could relate to this?

http://www.youtube.com/watch?v=x6Nm2ECx_nw&feature=player_embedded

Eye Doctor Appointment

I was hoping to actually blog about this on Monday night or Tuesday the latest but its been a busy week.  So we arrived on time to the eye appointment and the office was just wonderful. It was filled with toys and the staff was great.  The doctor actually on did 2 test on his eyes. The first is to just look at his eye like most of our pediatricians do. The nice part to this was he had a little fan with lights on it to have Cole follow and actually be able to look at his eyes. The next step was to actually dilate his eyes. I was not looking for ward to this but the nurse was quick and he cried for a split second. Once the drops were done it was time to wait and they let him back into the waiting room to play. We were in the waiting room for about 15 minutes and then time to go back in. They actually had Cole sit on my lap so that they could use this machine to take picture of the vessels of the eyes. This was a little hard because we had to hold his head into the notched area so they could take the picture. He did rather well for this process and stunned the doctor with the pictures they got. Once again he looked at his eyes again with another instrument and then the diagnoses came. He is perfect! It was so nice to hear good news. I actually responded with "someone who actually feels the same way I do about Cole."   Cole's eyes were dilated the whole day and kind of funny. It didn't seem to bother him and I can say that this visit to the doctors was not bad. I need to thank Dr. Engel and his staff for making this such a great trip.

10/30/11

I wanted to update on how things have been with Cole since the Mommy/Cole meltdown.  It seems that we are back on track with life. He is signing for what he wants if its a sign he knows. He is still doing the open sign but not always at the right times. So we are still working on that with him. After speaking to Cole's EI ladies the frustration might have come out of the drama weekend we had. Mommy started a new job along with some family issues that finally erupted. So we think Cole's meltdown might have been the fact that he had no way of expressing how he felt during this time. So I am now working on keeping family issues away from Cole and reducing the stress. Until Cole can express himself they way he needs too with out meltdowns our house will be as stress free as I can make it. 

Tomorrow Cole goes for his eye appointment.  I just filled out the 3 pages of new patient paperwork in hopes that we wont have to be there 15 minutes earlier. I am curious to see how this appointment goes since we don;t do good sitting for long periods of time. He seems to sit well during EI but he is still fidgeting a little. I hope that this goes smoothly and it doesn't set Cole back any further with health care providers. After having his EEG done Cole prefers to not be around doctors or nurses and if they touch him he starts to cry. I am trying to help him get over this but its a slow process. I will try to post tomorrow about the process and maybe even get some pictures up too.

To everyone who lives in Toms River,NJ Have a happy and Safe Trick or treat day and for everyone else have a safe and Happy Halloween.

Mommy Meltdown

I started this post last night but due to Cole's and my meltdown I was unable to finish. I love Cole more then words could ever explain and feel like God put me on earth to be his mommy. With that being said last night was horrible. For probably the past 3 days it seems Cole has had a meltdown trying to communicate with me at night. He seems to be using the sign language open or just holding my hands to try and tell me something. I acknowledge him when he dopes this and I try to help figure it out. I don't know if this issue is from the changes we have had the last week or just another bump in the road of life.  after about a half hour of him trying to communicate he got upset which in turned made me upset. I know that this is a process in life but I don;t want to see my son upset because he can't tell me what he needs or wants.  My husband tried everything including changing him for bed in hopes that is what he wanted. Needless to say after and hour I decide we would lay down and see what happens. I spent another half hour with him crying and me too before the calm down happened. He was laying in bed next to me trying hold my hands while also trying to get comfortable. I don;t know why he needs to hold my hands while trying to go to bed lately. I think my crying had to do with not only the issue at hand but the future of Cole. It makes me said to think he could be nonverbal the rest of his life. It also makes me wonder what his future will be like and if he will do anything that my husband or I did as kids growing up.  Last night made me realize that I need to find a group gathering with other parents going through the same thing. I need hope and guidance for the future of Cole. Last night as I was laying in bed I wanted so much to call my grandma and say " Please tell me what to do to help Cole." I just wanted someone to say do this and everything would be fine. I didn't call her because I knew it would upset her too and that was the last thing we needed. I need to add the goal of finding a group meeting for autism soon. Maybe then I will have some comfort or maybe just less mommy meltdowns. Please tell me how you hand your mommy meltdowns and what triggers them?

Another proud moment/Doctors

After a long weekend, it was refreshing to see Cole has picked up a new skill.  Cole decided that he didn't want his socks off an was able to put one of his sock back on.  I knew that Cole could put on mommy and daddy's socks but struggled with his. I am hoping to try and get him to repeat this task but only time will tell if he will. Cole will pick what he wants to do.

Well I started the task of making all of Cole's appointments. So far he has a PT appointment for Nov., OT is not until March and I called to make his MRI but didn't hear back yet. I also called Cole's neurologist to get his script for his MRI changed a little.  His script is for and MRI with IV sedation and I would prefer oral sedation. Every since Cole's EEG he seems to cry every time he sees a doctor or nurse.  So I prefer to do the less invasive sedation. I hope that tomorrow the day stay unit calls me to get the appointment process started.  Well I don;t have much since I am still glowing from my proud moment....

Goals for November and Recaps

So as October ends and a new month will begin I figured its a great time to make a to do list of upcoming things that need to get done and also make some goals for November. Since EI has entered our lives we have had 2 meetings regarding Cole and setting goal for him. I figured its time i start setting goals for myself even if its a goal to help Cole achieve his goals. So My goals for November are:
Try and make a poster board with Cole's day schedule maybe even get pictures up for him to see.
Start packing ( I have been looking at houses to rent and am hoping to find one by the end of the week)
Have Cole's MRI appointment and leave with a copy of the scans
Try to cut more coupons so that my food bill is lower
Manage my sleep better with my new job hours
Try to get Cole to sit in the tub or at least enjoy shower time
Not cry at Cole's EI meeting this month when we talk about school for him.
Try to budget 2 half days in daycare for Cole to build on social skills.
I think I will stick to these goals and hopefully I can get some of them done for November.

So the recap part of this is really updates on what has been happening with Cole.  He is now saying baby. I don't think he knows what it means but at least we have 2 words now. The bath is still a struggle. He likes to play standing up and is ok when you start to wash him but hates his hair being washed and wont sit in the tub. We bought a new shower head but Cole is not a fan of that either.  For EI Cole has gone up 2 points in 2 months from his last mini evaluation. As soon as I have a date for Cole's MRI i will post that and I will blog the day of it and hopefully have a picture to go with the blog.  Cole is on his strict diet that he has picked. It consist of chicken nuggets, cereal, hot dogs,scrambled eggs, chocolate milk and juice. Remember be thankful for the little things in life because they could add up to the big event.

As the month comes to a close

Well October was here and will be gone in a blink of an eye as far as I am concerned. New changes have taken place in my house and it seems like we are playing catch with everything going on. I have yet to just take a breath of fresh air.  The new things are: Mommy is now working mommy, Cole said baby, EI is now in the am, Cole has an ophthalmology appointment and of course Halloween is coming

Lets start with I am now a working mommy. Although I loved being a stay at home mom and well if we could afford it that's what I would still be. I found a job that allows me to work overnights so I miss nothing with Cole during the day. Although it is only my second day the job is going good but my body is taking it bad it seems. After working a 10 hour shift I found it hard to nap at all before starting my 11 hour shift the next night. Since i can't sleep I am extremely tired and well its making my stomach upset too. I am sure in time as I adjusts will pass. My body needs time to adjust to the new hours.

Next Cole's EI are now all in the am. We have worked it to Cole only has EI 3 days a week but still has 4 sessions. He has a double session on Friday which I am hoping he adjust too. I wanted to try and start to give Cole a routine and possible me too. I feel like now we can set up play dates with friends and maybe do some activities at the library.  We have yet to get Cole on a bedtime schedule yet but I hope to try and start that soon too.

We also started looking into preschools or daycare. We need to find on that fitsCole's needs as well we as our wallet.  We did find a decent one so I am thinking as soon as we can get him in we will or maybe we will continue to look. I know that Cole needs social skills and to start preparing for when he goes to school but its so hard to let go.  I don;t know if its because he does have some special needs or just because its the mommy insecurity.  I guess time will only tell with this and I will blog about it.

Lets talk about the magical moment when we realized that Cole is now saying baby. Rob(my husband) and I thought we heard it but it was in with all of Cole's babble so it wasn't until today when he said it in EI that we knew he said baby. I am not sure if he know what a baby is or who he is calling baby but a word is a word and I will take the improvement.

Its that time again where Cole has his doctors appointments. This month we have ophthalmology to check the retinas in his eyes. This will help us get an idea if we have a problem with the brain. For anyone who doesn't read all of my blogs we are looking into White Matter Disease. Its most likely he doesn't have it but we need to take caution and still spend the time to investigate this.  I also have to make an appointment for Cole to have another MRI done. Hopefully this will be the last one we need done. I don;t want to have to sedate Cole again after this MRI. So hopefully November will bring the end of us wondering if Cole has White Matter Disease along with Autism.

The last topic was its Halloween this month. My child has decide to to not like any costume this year. Thankfully we are not really doing too much trick or treating. Its my best friend's daughter's birthday so we will actually be celebrating that on Halloween. So i bought Cole a shirt that says Future Prom King......Place votes with mommy. I figure I still have some years to actually get him to enjoy Halloween and trick or treating.

So how many people have had change in their life this month?  How many people are actually taking their kids trick or treating? If your child is dressing up what are they going to be?

Lately I feel like I should be blogging more but not sure what topics to write on. Its been a long week at this household with a longer week to come. I would love to post helpful ideas for parents with special need children. I just don;t have much information to blog about. I've taken a break from all the autism books I have been reading and have just been focusing on what is going on in Cole's life.  So this is what is happening in our life:
Since the pacifier was taken away we have had numerous meltdowns during the day. It makes me miss the pacifier which I never thought I would say.  I know that it is gone for a good reason but miss the child who had less meltdowns. We have also ran into the problem of when Cole gets up from nap its right into meltdown mode. Unfortunately I have yet to find a way to help reduce any of these meltdowns. What i do know is that quiting the pacifier cold turkey was the best way for Cole. He still would take a pacifier if there was one around but we try to avoid him finding any. We are actually still locating the ones he has hidden in this apartment.
I start a new job next week and I am hoping that maybe in my training i will learn some new things about people with special needs. Maybe I will have a topic to blog about or helpful hints.
We are also looking into preschools/daycare for Cole. Although he wont need childcare since I will be working overnights I think its important that he have social interaction. I also think that it will help not only Cole but mommy get ready for when Cole goes to school when he turns 3. I dread the day he goes but know that its the best thing for him. I also don't want to lose services because I couldn't let go. With that being said I am looking for a daycare for 2 half days a week. This will help get him started and me to let go a little.  Hopefully I find one that will be a good fit for Cole and a good fit for my wallet.
We also will be making an appointment for Cole to hopefully have his last MRI in November. I am not looking forward to this but know that it could give me some peace when we get the results. I will blog about the process and also the results when we get closer.
That would be the end of the issues we are dealing with in this household. So i will continue to post on topics I have and hopefully it will be steady soon. I am also hoping to increase my followers. My goal of this post is and will always be a way to help other parents. I want to make sure I don;t lose sight of it and the people who do read this realize that they can ask me anything. So please feel free to comment or even email me.

New Month

As we enter into a new month it seems life has new challenges. This month I will go from being a stay at home mom to a working mom, Cole has given up his pacifier and I plan to get Cole into more social activities. I know Cole misses his pacifier because he is chewing on his blanket now. I think he misses the fact that it helped him soothe himself. With the pacifier being gone we also have seen more meltdown. I am by far the wrong person to ask what to do about the meltdowns. So far I try to ignore them and if it goes for too long I will try to help him to understand what is going on. So I am opened to any other suggestions anyone has out there for meltdowns.

As far as social interacting for Cole I am hoping to be able to plan an activity a week for him.  My husband and I had a chance to look at a daycare today. I was originally thinking of putting Cole in one for 2 half days for social interaction. I want him to be prepared for when he actually goes to school at age 3 and also work on his social skills. I realized that even putting him in for the little bit of time might be hard to do. The price was more then we could afford so instead I started looking at local libraries. We have 3 in close range of us and the classes are normally free. So I plan to work around his EI so that we can now do that too.

Hopefully the last change will be me going back to work. I actually found a job that will hopefully not interrupt Cole's day. I will be working overnights so that I only miss Cole sleeping.  My goal was to be able to be as hands on with EI as I am now and also not miss any of Cole's first that he still has. New Jersey is a 2 income to live state so I knew this day would come soon. I wanted to school for a career that I would be able to work overnight. So I am hoping I can adjust to the knew schedule for Cole's sake.

I wanted to end with what most parents feel at one point or another. I spoke to a friend tonight and said i just wish Cole could talk. I wish when I went to the daycare that I didn't have to focus on if they could meet his special needs he has.  I also hate the fact that after leaving as much as they tried to make me comfortable that is there anyone I can trust to care for Cole. I know by age 3 Cole will be in the school district because EI ends at 3 but how do I know its right. So I started wondering will I trust someone with Cole , when will he really talk and communicate what he wants, how much longer do I have to wait? I wish there was a fast fix to this in life but I have yet to hear or find about one. So I am closing with the Serenity Prayer tonight:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Bath Time

In our house bath time use to be fun. Cole loved being in the water and loved having bath time. I would say a few months ago Cole decide that he was not sitting in the bath and we would cry.  I have asked for advice on what I could do for bath time to make it easier.
Things we have tried: getting new bath toys that he liked in the water table, wearing his swim trunks and water shoes, filling the tub and emptying it when he is not in the room, filling it while he is in the tub and emptying it and recently i bought a new shower head that I could give him a shower. 
Tonight I decide I needed to try something new. I picked his cups to play with and I added the epsom salt with lavender scent. I started using the epsom salt after reading that it release some toxins from your body and helps some children who are special. When I started using this Cole had already hated the bath so I was really hoping to possibly seeing if this worked for Cole. I let Cole watch the tub fill and help me get everything we needed for the tub. After all this he was a little upset when I put him in the tub but I was able to calm him down fast by talking to him. We played with his cups for a while and I started to splash him. It amazes me that he laughed at being splashed but cries when you put him in the tub. So after being in the tub for 10 min I had him squat in the tub to see if I can at least get his butt to touch the water. We were successful in this and I continued to do this a few more times. So although we are not sitting in the tub he didn't cry except when he was first put in the tub. So I plan to try and do a bath each night to try and get him sitting in the bath soon.

Bath Night

Tonight was bath night and its the nights that I hate the most. Cole refuses to sit in the tub and everything I have tired is not not working. He cries when in the tub and makes it hard to wash him. At first I thought it was the bubbles he didn't like the feel of them so we stopped bubble baths. Then i thought he didn't like the feel of the tub so we got a cushion bath mat. The mat didn't work at all and actually made things worse. So we got rid of the mat. Next we tried a stool in the tub. Since working with EI he sits on a stool to do his puzzles and though that maybe it could work. Well tonight was try the stool night and it was a big failure. Well it started with the stool floating in the tub. As I was trying to holding the stool down and sit Cole down he started crying like I was killing him. So I I let him stand again and washed him real quick so that at least he was clean. Normally after a bath I would give him a pacifier but we are trying to take that away. Day one without was horrible. I am hoping it gets better as the days pass. But that is for another blog. So tomorrow I am going shopping for a shower head that you can remove to be able to give him a shower with out having to be in the shower with him. This is my next attempt to make bath time better. I would just like to have bath time without tears and a meltdown.  So how many parents have a child that hates the bath? What do you do to make it less of a traumatic experience for the both of you?

Books that have been a help

I figured today i would write about the books and blogs/websites that have been a big help to me. Lets start with books:

The first book i read was The Late Talker: What To Do If Your Child Is Not Talking Yet by Dr. Marilyn Agin, Lisa Geng, and Malcolm Nicholl.  This was the book I read when I was trying to figure out why Cole was not speaking. It gave insight into Early Intervention, the different types of services such as speech therapy, ect, and what types of doctors that would evaluate your child. It also gave you the rights you have to a child who may have special need. It also spoke of the different reasons your child may not be speaking.

The next book I read was Could It Be Autism? By Nancy D. Wiseman. I picked this book up when the neurologist started speaking about Cole possibly having Autism.  It went over different test they do with children, it gives little inserts from different parents that relate to the chapter. It helps you with how do deal with the diagnoses. It goes into what rights you have as a parent with a child with autism and the meetings you will have with the schools. All in all it gives you a little heads up on what you will be in for with the getting your child help.

Book 3 is Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. This book helped me understand why Cole does some of the things he does. It went over being patient with your child and the difference between wont and can't.  the book talked about sensory perception and how autism children interpret language literally. It also went over other issues and was an easy book to read. Being able to understand what Cole may be going through really made me think about is it a meltdown or an overload.

After book 3 I decide to take a break from serious book and read : Shut Up About Your Perfect Kid A Survival guide for Ordinary Parents of Special Children by Gina Gallagher & Patricia Konjoian.  This book is about 2 sisters who have child Autism and the other with Bipolar. I don;t remember how I found this book but felt like I needed to read it. I am surrounded by parents who have normal or advanced children. They always ask about Cole and never make me feel like Cole is slow. I just have my own insecurities about it and its nice to see how other women dealt with it. I am still in the process of reading this book so I can't give too much info on it but they also have a blog. I will be blogging about websites and blogs that have been a help soon.
Well I hope that this list helps some parents and until the next blog enjoy the special child that you have.

Mama

Last night was one of the best nights ever for me. Cole finally said Mama. The last time I heard that was one he was one I think. It feels like we are finally going in the right direction again. After he said mama last night I couldn't wait for him to say it again and hoped it would be soon. Thankfully it was this morning he said it again.  I have had a lot of people tell me that once he starts talking I will want him to stop. I can truly say that even when he is babbling I can't get enough. I just wish i knew what he was saying.  Having a normal speaking child is different but when you put so much work into a child to talk anything you get is great. We have spent 4 days a week with EI and a few months in speech twice a week at our local hospital. So as much as I was hoping to make this a longer post I am going to enjoy listening to my son say mama. So my question to everyone is: When did your child start talking? How much work have you put into getting them to talk?

Research

Today I decide to blog about research. How many people when getting a diagnoses go to their computer and start googling away? I am at fault for this and then get myself worked up without taking in the whole article. From the time the neurologist spoke the word autism I had a bad feeling in my stomach. Everyone i spoke to told me he is fine and that nothing was wrong with him. As much as I wanted to believe it, my gut said different. My goal during this time was to actually find articles that pretty much told me that Cole didn't have any signs of autism and this doctor was wrong. I heard that a lot of doctors were quick to diagnose a child who had poor eye contact and didn't respond to his name with autism. As I read article after article that gave red flags for autism it became painfully true that my son had a lot of red flags. I went through the stages and felt alone during this time. My husband at the time didn't want to believe anything could be wrong. He thought that Cole would talk when he wanted and that he just had selective hearing. Up to this point I don't know what my husband thinks and I hope that this is his own way of coping with this. I think that to a certain point I haven't dealt with it either. I thought that I had gone through the grieving process as they call it but really haven't told many family or friends. It took me writing my blog today to realize this. But back to the the topic at hand, I still research and look up things. I look for new treatments and look into different diets and doctors. I would like to think in all the reading I do that maybe one day I will find something that would cure Cole.  In all reality I think Cole and I were meant to be together. I live my life to better his which is what most parents do for there child(ren) but I have this connection with Cole that I don't think could ever be broken. A lot of people may say he is a mama's boy but I am starting to think that Cole knows that no matter what is going on that I will be the one to know his needs. He knows that I will never do anything that would hurt him and that I will study and research everything available to make life a little easier. Even though I started this blog to help other parents, I believe it is helping me too. I hope that even though I don't have any responses that it is helping someone out there. So my question tonight is what have you done to make things better for your child(ren) and you?  How much research or google have you done to figure out why your child(ren) do what they do?

Getting Back on Track

So as the summer is slowly coming to an end our family is trying to get back on track. In the past few weeks Cole has had company(actually family which we enjoyed), was sick and then had sick parents. During this time we had only a little to no EI. During this time I realized how much Cole counts on EI and enjoys having the structure they give him. It inspired me to actually start trying to schedule our day a little. I want Cole  to have the structure he seems to be longing. I have never been a schedule or on time person and I married a man who is also not that good at this. So this is a new challenge for us as well. My first goal is to get a bed schedule together so that he knows what time is bed time. Once this is done I can start to plan more of his day. I also spoke with both of his EI teachers to change his EI times to morning time. I want Cole to have the afternoon to make plans with friends or have some social interaction. So how many parents are more structured out there?

I am also working on increasing my sign language vocabulary. During all the family visit I chaos also had  of other things which of course made me question a lot of things. One being while Cole be a nonverbal child?  If he does become verbal will it be minimum or could we finally have a child that just talks from wake up to bed time.  Of course thinking Cole could be nonverbal makes me upset and then makes me wonder what the future will be like. It made me start thinking that once Cole is on a schedule or as close as I can get him to that maybe I should plan for the future. I need to have a game plan with Cole for the future and what goals we will have. DO you have plans or goals for your child(ren)?

Huricane

So I know I haven't posted in awhile but hearing about the hurricane coming inspired me to post. Seeing everyone panic and buying stores out of supplies makes me wonder what major supplies did everyone get for the store? I bought the basics for the house like most people do like bread, milk, and eggs. I also made sure I had Cole's favorite snacks in the house. There is nothing worse then having a child who doesn't understand why the power is out and not having treats for them. Since we are at the Jersey Shore we have had friends and family offer to have us stay there if we are evacuated. My hopes is that the storm is not so bad that we would have to leave our home. As thankful as I am for the invites I know it would be harder on Cole. The last time we did a sleepover was when he was an infant. I have no clue how he would handle a sleepover now. I have been told by a few people that children with autism like routine. I am by far the worst person for routine. I plan for major things but not for daily life.  So with our diagnose of autism I know that routine will soon come into my life. So I have to wonder if it does get bad here how will Cole handle a sleepover. I also wonder what toys and snacks would I pack for him. Keeping things as normal for him is always my top priority. SO my goals for the weekend are to make sure I have plenty of flashlights and candles along with Cole's snacks and favorite toys ready to go. SO the question comes up what have you done to get ready for the hurricane? Do you make sure that you have special things in the house for your child(ren) when you have a storm headed your way?

End Results of EEG

So I am sorry for the people who have been reading for not updating sooner. The hospital had us on minimum cell phone and laptop usage. So as much as I wanted to post the whole time I was there I was unable to.

Day 2 of the EEG was long. Cole's first night in the hospital he only got 4 hours of sleep. It seemed like every noise made in the hospital woke Cole up. He didn't bother pulling at the cap or anything that they had on him. The doctor came in to give us and update on the reports as of 9am the Cole had no seizures. His brain activity was registering at an 8 when children his age normally register at a 6. Cole is registering at a higher age group. That was the best news I could get that day.  Since Cole had not slept well he took a 4 hour nap while my family visited.  I am so thankful for the visitors we had, it made the day pass a little faster. Cole was such a trooper through this whole process.  By night time Cole and I were both tired of being in the room. Because the were videoing the EEG Cole was stuck either in the crib or on my lap. He had to stay in the camera area. The wanted to make sure if he had a seizure that they knew what he was doing and could see if that was a trigger.

Day 2 night: Cole didn't go to sleep until 11pm. He was tired, bored and just wanted to run. I hoped and prayed that the doctor would come in early and we would be discharged by noon on our 3rd day.  Sleep went a little better but not great. He still woke up through the night but not as much. Waking up in the middle of the night was also when Cole was done having the electrodes on his head and decided to start itching and pulling at the cap.

Day 3: I worked hard trying to get Cole to sleep in. I knew he would start attacking the cap as soon as he was up. He was up at 5:30 am since our roommate was up because he needed meds. We really had a great roommate the whole time we were in the hospital. Cole was able to sleep a little more and was up again at 7 and then back at 8:30am.  By 9am in the morning I decide that Cole needed to run and actually let him out of view of the video camera. He loved that time he had. The doctor came in at 9:45 and told us that Cole was seizure free. Thank God for no seizures. She asked to follow up with Cole in a week to be able to give us all the information we would need. She said Cole has regressive autism. She explained it as the autism was the cause of his regression and losing the words he had.  I was happy to finally have a diagnoses. We do have to have one more test which is an MRI in 6months. The doctor wants to rule out white matter disease. Cole did not handle having the electrodes taken off.  He cried like someone was killing him. The process to get them off was not horrible. The first unplug the electrodes from the box. They then take off the cap and cup the gauze off that is wrapped around the child's head. Once that is done the start putting spraying water on the electrode area. They use some kind of stuff that looks like cement to hold the electrodes on. The water helps to loosen it up and then be able to take electrodes off. Once they were finally off I took Cole for a run in the hallway. After that I had to use a wash cloth to get the rest of the stuff off his head. 

I am still processing the diagnoses of Cole. I thought I had accepted autism and was researching different things you can do with a child. Unfortunately as I laid in bed last night I realized that even though this is not the worst thing that could happen why did it have to happen to Cole.  Why does Cole have to have this challenge in life? Did I do something wrong while I was pregnant? Maybe if I had breastfeed longer and not given up so easily this wouldn't be true.  I look and listen to other children making their milestones and wonder how much longer it will take Cole. This is the first time sharing these feelings I know I need to get off the pity train and move on. I know that i will be on the pity train for a while but it will be an inner self fight.  I plan to start looking into things that could help Cole more. Although I don't know know as much as I like about autism my goal in life will be to help Cole and ensure him that he is no different. Autism is a label and that is all it will ever be. It will not define my child.

End of Day one for Cole's EEG

So it wasn't until about 230 that they finally came in to hook Cole up to the EEG machine. I wanted to actually video it but was unable since I was holding Cole down.  I think I am more traumatized then Cole is for this experience. It took about 45 min for them to completely hook him up and most of the time Cole was in tears. The placed a little over 20 small electrodes to the child's head and then place 2 self adhesive electrodes to the forehead above each eye. They also attach 2 heart leads and once this is done they then wrap the head up in gauze. They then add this sock looking thing over the wires and place it on the child's head. I thought when we came that Cole would at least be allowed to walk the room but it looks like he is stuck in his crib or on mommy's lap. He can't go to far since his wires attach to the wall to compute to the nurse. As prepared as I thought i was for this trip I was clueless to what I would need. I was successful on videos to watch but we don't have enough toys to keep us busy. I was also very thankful to my sister for keeping Cole company and bringing dinner to me. Tomorrow is day 2 and the doctor should be in and I will hopefully know if we have had any seizure activity since being hooked up. I added a picture of Cole after being hooked up. Until tomorrow......

EEG the first few hours

So we were told last night that we actually had to be at the hospital an hour earlier. I am not sure why we came earlier since its 1pm and we are not hooked up to the EEG machine yet. So here is how our day went:
We checked in with admitting were my adorable son keep flashing the lady with his magnificent smile. Once she put the bracelet on his ankle Cole's feelings were hurt and he decided to show her by crying. Shortly after that and a few laps around the waiting area we were brought up to our room with another family.  Cole will spend the next 3 days with another child who is about a year younger then him.
Next the nurse started her round of questions and getting Cole's vitals. The doctor also came in to speak with us. She gave me the load down on what would be happening and ordered blood work.She said that Cole would not need an IV so they would end a phlebotomist up to take his blood.  While the doctor was in the room we were able to talk about what her diagnose of Cole is. Its official he has Autism we are just trying to see if the regression is from focal seizures. I thought I was prepared to hear those words after all the research I have done but I just want to cry. Enough about me back to who this blog is truly about Cole.  I am hoping to post a video of the EEG process but am not sure if I will be able to. So until the next portion of our day....

June 16,2011

I am sorry for everyone who reads this that I have not blogged lately.  I have spent a lot of time finishing school, extern and taking my national test in hopes to better our family.  My hopes of blogging regularly has been just that a hope.  With that being said I am blogging today to update:

Cole is now saying E-I-E-I-O. For parents of nonspeaking children you can imagine how happy I was. I videoed him and called my grandma to let her hear. It was one of the best days in my life. 

The PECS system is coming along and Cole is now starting to pick between 2 cards. He seems to love to torture Noreen and make her sing the Itsy Bitsy Spider song even though he doesn't like the song.  He smiles every time he picks the card even though he really wants to finish the task he started.

Monday we head up to JFK hospital for Cole's 3 day EEG. My goal is to keep him happy and also try to video the process. I am hoping that we will come out of this experience with a diagnose of no seizures and a video for parents who will go through this. I have googles looking for videos of what I have to expect and have found none on a toddler. I know that they preform these on toddlers but no one has posted them.  The hospital only allows one parent to stay with their child so I will be at the hospital alone. I am hoping to have family and friends who live by the hospital actually come visit us to keep Cole company. So I will keep everyone posted on this fun adventure we have.

So until Monday remember no matter why your child is delayed they will always be perfect in their own special way.

Waiting

Have you ever wondered how long you could wait for an answers?  I have spent the last few days thinking and wondering when the day will come that we will have an official diagnose for Cole.  Its been about 8 months since we talked to Cole's pediatrician and started this long road to a diagnoses.  We had 3 audiologist test, 2 EI evaluations, ENT appointment, Neurologist appointment, Blood work, MRI and 30 min EEG.  We have ruled out a hearing problem and seem to have moved on to autism.  I sit and wonder if Cole has too much EI or if its not enough because he still doesn't have speech.  I have wondered what i can do to help Cole more then what I am doing. I am looking into a gluten/casein free diet but know that it will hard on all of us.  So how much more can I truly do to fix what is going on? I read in the Jenny McCarthy book and she gave me renewed hope to actually be able to fix autism. Although I don't believe vaccines did this to Cole. I do know that I plan to do everything I can to fix this.  I am looking into different doctors, diets and other therapies. The only thing holding me back is the fact that Cole has yet to have a diagnoses of Autism. I don't know if i go forth on the fact that his neurologist is speaking like he has autism or if I wait for her to place the label. SO the question stands what do I do? How do I make the next move? Are there any parents in my area that can guide me through this?  These are just some of the questions that I have that i need to get answers before I move forward.  I guess when we do the 3 day EEG I might get some answers.
On a different note I have decided that I should start my own business of helping parents get answers from their insurance companies. I spent 45 min on the phone to try and figure out if Cole's neuropsych evaluation is cover. I am not even close to the answer after being transferred 4 times. Hopefully tomorrow I will be able to get one step closer to the answer.  Good Luck to all the parents that continue to fight to help their children.

Autism

I wanted to actually wait to post this until Cole actually had the label.  But it seems the last couple of weeks its been used more frequently then before.  When Cole first started EI, Noreen had told me that Cole had a few signs of autism but we didn't think at that time he had it. I did the best I could to keep him away from hospitals that are fast to diagnose a child with autism while we were trying to figure out what was going on.  Cole's main signs that we noticed was poor eye contact and no speech.  Later at the neurologist i found out on the M-CHAT that Cole had about 7 red flags out of 23 questions.   The doctor sad normally 3 red flags leads them to start looking at autism.  The M-CHAT is a test the parents take on their child. Its all yes and no answers that the doctor then grades to see how many warning signs your child has for autism spectrum. Our neurologist spoke about autism with regression and possible seizure. We took Cole for his blood work, MRI and EEG and like every parent we waited.  The blood work was the first to come back since the MRI and EEG appointment felt like we had to jump through hoops for. His blood work came back normal and next was the MRI and EEG.  The EEG came back normal but the MRI showed abnormalities. I immediately panicked and if it wasn't for Melissa ( Cole's EI) I would have kept panicking. I picked up the MRI and couldn't help but look at the results.  The abnormality was that he could possibly have White Matter Disease.  Once again I did the worst thing and googled it. I overnights the MRI to his neurologist and hoped that I was now overreacting.  I spent a whole weekend keeping busy with the help of my car, to not think of what the doctor could tell me. So the call finally came in and she said that it was not a concern the white matter disease now since he was so young but wanted to have a follow up MRI in 6-12months. I know that it will be a worry in the back of my mind but I can't put my focus on it.   So I thought I was in the clear and that we would do Cole's follow up appointment in July like planned and all would be fine. I know that autism still lingered but it was actually something I accepted. But then the words came out of the doctors mouth that we needed to talk about his EEG. She told me it was only 30% accurate as far as telling us if seizures had happened. She now wants Cole to go for a 3 day EEG.  He would be admitted in the hospital and she would monitor him.  She said she needs to be sure that there is no seizure. While she was speaking she was implying Cole was Autistic.  I also went through this while speaking to Cole's peds doctor at his check up.  I started to wonder if they knew but just wasn't labeling him.  While trying to wrap my brain around this EEG , I was also wondering if our next appointment Cole was actually going to have the autism label. So I am now waiting for the day for the label to happen. I still have hope that its not that and of course hope That all of the sudden the light clicks on for Cole and he starts speaking.  But i know that Cole's warning signs are there and it will be hard to change that. I just wish the doctors would tell me what is going on and if I am proceeding the way i should. Its hard to know if all the EI and Speech at the hospital is going on the right track. I know Cole loves all of his therapist but wonder if its too much some weeks. I also want to say that parents who have children with special needs should win a medal. I spent a lot of time trying to make appointments, find the best place to take Cole for his testing and just keep things straight.  It made me realize that parents who have children that have major special needs are truly amazing. So to all those parents who have special needs children: YOU ARE DOING AN AWESOME JOBS AND YOU ARE AN AMAZING PERSON!

Meltdowns

So most parents know the meltdowns that normal kids have. I knew that this would happen but not because Cole was overwhelmed or rejecting a new form of communication.  This week has been a challenge since Cole has had a few meltdowns over different things. He wanted more bubbles but didn't want to have o use the PEC System, it was early and he wasn't use to friends being here, or just because he woke up and was not ready.  So what do you do for meltdowns? I have been working on different methods this week. The one that seems to be working the most is holding the small vibrating massage to his back or side. It either puts him back to sleep or relaxes him enough to overcome the meltdown.  I have tried to work him through the meltdown and a few other methods but the don't seem to work as well.  So my question to everyone is what method seems to work for you?

On another note the PEC System is slowly coming along.  Cole is not focused like we need but we think it might be because he needs his pictures to be of his actually toys and food. So starting next week we plan to use pictures of his toys that I took this wee.  I also plan to make Cole a fabric book for his pictures to go into.  I hope he adapts to the PECS but only time will tell. Until tomorrow.

PECS

So let me explain what the PECS is. Its the Picture Exchange Communication System.  What you do is the child has cards with pictures he uses or foods that he eats. When the child wants something he will hand the card to his parent or therapist and they will hand him the item he is requesting. It helps children who are speech delayed with a form of communication. This system is used a lot with autistic children.

We recently started this system with Cole. I choose to start this after Cole was becoming increasingly frustrated with trying to communicate his needs. We were doing sign language but it is a slow process for him. So the goal was to start by getting him a card and reward with a highly motivating item.  So we started with M&M.  Cole is not motivated by chocolate it seems.  What we worked for was he gave us the card and and he got an M&M. When we realize this wouldn't work we pulled out old faithful...His Bubbles. Cole loves bubbles and was so happy to have that instead of food.  This was started 2 wees ago and we are now moving to the next step. Cole now has 2 cards and he needs to look at the picture. One is a highly motivated item and the other is something less motivated.  This was started today and well lets say he was not happy with the change  I don't know if he was tired or just getting over yesterday.  So we are now going to work on choices with Cole so we can get the next step moving.  I am hoping that this new system works so that Cole has a little more communication.  I still reward or cheer for him if he tries to say what he wants. I would prefer he talk but this is the next best thing. 

So for all the parents with children who are speech delayed you might want to check this system out.  You can google this system and find pictures or use your own pictures that you take.  We tried to use generic pictures but we feel that using actually pictures of his stuff would be better for Cole.  You can also email me for more information on this system if you would like.

EEG and MRI

Well today was the big day for Cole. He was scheduled to have an MRI and EEG with IV Sedation.  We had to sleep deprive, stop all food at midnight and get him up before 6am if we wanted him to have a drink before going on.  As most parents know my biggest worry was would I sleep deprive him enough that the sedation would work good. Well I can answer I dd it a little too well.  I spent most of the night worried about the IV while Cole sleep so good. He got up at 5:45am and took only 2 sips of his water. I figured at least he got something.  The trip to the hospital was about 40 min and well It seemed like it was hours.  Cole tried to nap but we were able to keep him up and once we made  it to the hospital he was wide awake and ready to run around again.  Let me just say this Monmouth Pediatric Day Stay Unit was awesome. The nurses were wonderful and if Cole ever has to go for any test I would take him there over any where else. His nurse explained everything and we signed paperwork, and then his doctor came over and it was the moment I dreaded.  I was ready to  hear about the IV but he stunned me by saying that their neurologist didn't want to do an EEG with IV sedation but they would do oral sedation. I thought great no needle this day might go better then I thought but then he said he may not stay asleep long enough to do both test.  If that happened we would have to come back for the other test. My heart dropped. How could I put Cole through this again?  I accepted it and got ready for Cole to get his meds.  He hates taking anything so we had to hold him down while his nurse gave him the meds.  He tried to fight the meds making him tired but finally gave in.  His first test was the MRI and he looked so helpless.  When we got to the MRI I was allowed to stay in the room while they hooked him up but when the test started I had to leave.  The nurse reassured me that she would keep a good eye on him and he would be fine.  Thankfully they put ear plugs in and cover hi ears so that he didn't have the loud sound from the MRI.  It took about 35 mins and thankfully he came out of there still asleep.  So from there we rushed him over to EEG.  This was the test I worried about.  I knew he needed to stay asleep for about and hour and once again i was left in a waiting room.  He nurse once again reassured me that she would take good care of him.  He slept so well that towards the end of his EEG they need him to wake up and they had to use a cold towel to do that.  He came out of the room still sleeping and it took about and hour and another cold towel to wake him up.  We were told to monitor him and to watch his balance. He was a trooper through all of this and woke up a happy child still. My son truly amazes me on how happy he is. He woke up thirsty and hunger.  His nurse gave him juice which it seemed he didn't come up for air until it was done. When we left we had to hold his head since he was almost like a newborn with no head control.  Thankfully that only lasted an hour.  We took Cole to lunch and then he fell back for another 3 hours.  When he woke up from his nap he tried walking for the first time and well lets just say he looked like he was drunk. It now almost bed time again for us and he is ready for bed and is close to back to normal.  Now the waiting game begins for the test results.  I tried blogging in the hospital but it seems i messed up on the set up for mobile blogging. Well until his next appointment or achievement.........

Update 5/30/11

Well I start blogging would be so much easier and I would be able to blog everyday. As you can see I haven't blogged in a little but over the next few days I have a lot going on with Cole. Cole's progress has been slow which has lead me to not have much to blog.  He has made progress but its slow progress and well it makes it hard to write anything.
 So we recently had his blood work done and I didn't realize that the blood work takes so long.  Its been over 2 weeks and I have yet to get the results.  I am hoping to get them this week.  I am also hoping that this gives us some insight in to why Cole still has no words. 

Cole also had his 6 month evaluation with EI....Let me say it was like a party here.  We had Noreen, Melissa, his speech therapist and then his social director.  Cole made a couple moths progress in most of his categorize but he is still below his age.  So we keep his goals that we started with since he is still working on them and then we also add a little to it. So needless to say we are still at 4 times a week with EI and 2 days at the hospital with his speech therapist. 

So this Tuesday Cole will be going for his EEG and MRI with sedation.  I am extremely worried about him and sorry that he has to go through this.  The hospital told us we had to sleep deprive him, no food after midnight and that he can have some water or apple juice until 6am.  Did I mention Cole goes to bed late and get up late.  He normally sleeps until 9am and well we have to be at the hospital at 8:15.  So needless to say he is already getting up earlier then normal. I am wondering how I am going to keep him up later and get him up before 6am so he could have a drink before he goes to the hospital.

These test are suppose to rule out autism and give us insight to see what it could be.  My biggest fear of all these test are not the autism but that he could be having seizures.  I have come to grips that it could be autistic.  It took a lot to get myself to the point of accepting and not blame myself so much.  I still have those days where I wonder if it was something I did.  I will never know who made Cole be speech delayed, I just know that I am doing everything in my power to help him.

Tomorrow I will try to actually post from my phone on my blog to keep my blog going and give parents who are going through the same thing some idea of what happens.  I might even start tweeting about Cole but first lets get the blog back on track.  I truly hope I am helping some parent out there and would love to hear from everyone. I hope that everyone is having a safe holiday.

Early Intervention

I was not familiar with Early Intervention until it was time to call them for Cole.  I knew his speech was delay but never realized what other areas he was delayed in.  I worried that Cole wouldn't get help with speech because he didn't qualify.  According to EI you need to be delayed 33% in one area or 25% in 2 areas.  I thought Cole was only delayed in speech.  I found out he was delayed in 3 areas at least 25%. I was so upset and felt that this was all my fault.  I still feel that guilt but tend to push it to side because focusing on helping him is more important.  After reading a couple books on speech delay and also autism I realized had I picked up a book I would have learned about EI sooner.  I am glad my pediatric doctor  recommended EI to us.Not only has Noreen and Melissa from EI helped Cole they have been a great support group for me.  They prepare me for all Cole's appointments and just help me realize that no matter what I am doing the best for Cole.  They have become a part of our family.  On the down side of EI they only work with your children until 3 and then they transition them into the school system.  I still have time for that but still worry about it for Cole when his time comes. My advice is that if you have a child who is delayed and you are worried EI is a great help.

Return to Speech

So many people know I gave Cole a spring break from Speech at the hospital and from EI.  Until Cole has been diagnosed I figure he deserves a break.  He enjoyed going to BounceU, shopping, having lunch with mommy and daddy and playing with friends.  I worried that today he would not adapt well to returning to speech but he had no problem.  He actually got upset that the learning toys had to go away because our session was over.  He is not babbling as much as I would like to the speech therapist.  He seems to do more at home then out at speech.  My goal is going to work on that with him and hopefully get back into the swing of our sessions.
I am also waiting to hear from CHOP.  I am really hoping to hear from them before Tuesday but am starting to think I will have to call them.  My hope is to make sure Cole is receiving the proper therapy before I actually graduate from school.  I want to know that when I start work that Cole is getting the help that is needed to get him to speak,respond to his name and interact with other children.
I don't know who reads this blog but i know that it at least gives me an outlet to express what Cole is doing and how I feel.  I hope that one day this blog helps someone else to.

4/26/11

Cole has had a week and half off from all sessions.  He seems to be trying to say ma but not there yet.  We went through a time where Cole would not take his Omega-3.  I noticed that the babbling had slowed down and we are hoping to be able to start this back up this week and see progress.  I am also waiting on a call From CHOP who will hopefully give us a second opinion.  I also have started doing research on autism.  I am no longer upset about this being a possibility but still wish that I have been over reacting.  I notice myself feeling bad when Cole is around other children who can talk and he can't. I also worry about teaching him sign language when the children he is around don't know sign language.  He tried signing to another child and they had no clue what he was doing.  So I still feel upset and wish that there was something more I could do or wonder why Cole is having this problem.  I wonder what I could have done different and how it might have helped him now.  Thankfully my husband keeps reminding me that things will get better and that we will get Cole to where he needs to be.  So I will continue to pray, research and work on his therapy even if I don't have EI or speech at the hospital.
So if I have anything to offer another mother dealing with a speech delay child it would be to keep your head up.  Things will get better and as frustrated as you are so is your child.  I would also hope that parents will find someone to talk to even if you need to email me. So my hope is to start blogging everyday again and to make sure I write about the progress, test and doctors we visit. Tomorrow starts the beginning of speech again.....

Update

So its been a long time since I actually blogged....I got off track with everything going on.  We had the evaluation at the neurologist and well the news was not what I was hoping for.  It seemed like my word came to a stop and I just couldn't deal with the news.  I walked out of the office and tried not to cry.  My grandma had said that the doctors at the hospital were the best and now they were telling me it could be 3 things.  We are now looking at Autism (which I wasn't upset about just the fact she scared me with the seizures he could have), learning disorder that is showing now but we would affect him more when in school, or a problem with his brain.   The doctor gave me scripts for all these different test and told me she would see me in 3 months. All I could think of was I didn't know what was worse the test to see what the problem was or the actually diagnoses I would have to deal with.  So after taking the day of processing it I decide it was best to actually have a second opinion done.  So I am now waiting on CHOP to call me to make this appointment.  This seems to be the hardest thing n the word waiting and seeing what may happen.  I also gave Cole the week off to relax from Speech therapy at the hospital and EI this week.  I figured he works hard and needs a break from all this and I need time to process what we were going to have to deal with next.  I look at Cole and then look at kids around Cole's age and wonder what he would be saying if he was talking.  I guess that's why its best to take one day at a time.  I am so blessed to have a wonderful child and so proud of how strong he is to be able to handle everything he does..

Tomorrow is hopefully the last evaluation

I sat in class today wonder what tomorrows appointment will bring us.  On one side I would love to know if Cole has a speech disorder but on the other I just hope that I am overreacting to this speech delay.  I am preparing for the doctor to say he needs to see Cole again before he will diagnose him. This would leave me with no answers and hoping that what Cole is doing now is enough.  I have so many feelings going through me and I can only imagine how Cole feels.  He has seen and Audiologist, ENT, his pediatric doctor, Speech therapist and evaluated by EI. Now he will see a neurologist and maybe a ped neurodevelopmental doctor if the neurologist feels he needs to.  I pray that tomorrow comes answers and a new goal plan for Cole.  I am not a big fan of the speech therapist we have outside of EI and I am hoping to hopefully get our speech therapist through EI in here at least one extra day a month.  So until tomorrows post and hopefully some answers........

Preparing for neurologist

We spent last week working with the speech therapist and having an mini evaluation done trough EI.  I want to have everything together when we go to the neurologist.  The upside to all this week is that I actually got to see on paper the improvement Cole has made with EI. So something to think about: When preparing for multiply doctors have a binder together.  I made up different tabs that have all of his evaluations, all his EI notes and any information I have like supplements.  Having all his information in one spot helps when going to Cole's different appointments.  I am hoping out of this evaluation to get either a diagnoses or a unofficial diagnoses.  I want to make sure he is receiving the best that he can with his therapy.  I also plan to plead Cole's case to his speech therapist through EI to try and get her in more then once a month.  I am sure that if Cole has made the milestones that he needs that we will get them in more.  As far as his new speech therapist I am out on a verdict with her.  I am going to give her a little more time. So I hope that this next week we will have come a full circle and have answers to why Cole is struggling to talk. 

New Speech Therapist

Today Cole saw his new Speech pathologist.  He is scheduled to go to her twice a wee for a half hour each time.  She didn't really push him today.  She is doing close to the same things that Noreen and Melissa are doing with him.  She did try to do a new activity but Cole wanted nothing to do with it.  She had a paper blender with some paper fruit.  She wanted Cole to say MMMM and Velcro fruit to the blender.  She also did bubbles with Cole.  I wish she would have waited until Cole would make the b sound before blowing the bubbles but like I said hopefully it was because she was getting to know him.  This Friday I will actually be able to see what progress Cole has made in the eyes of EI. Next week we have one more appointment with the neurologist and hopefully we will have come a full circle.  Until tomorrow

Evaluation Day

I don't know if anyone has had to bring their toddler to a hearing test but they are normally not fun.  Cole saw an audiologist and well it always ended up with crying.  This time we had a hearing test done at his ENT and let me say how amazing it was.  It was like night and day with the test.  She was able to get accurate reading and put to rest the fluid that we were told Cole had in his ear.  There is no fluid but a little bite of negative pressure from him being a little congested from allergies.  He was inconsistent in the booth, so they want him to return in 6months.  If you don't know what the booth is what its called with speakers.  They normally will make a sound at different levels and hopefully your child turns their head the was the sound came.  They also have some kind of visual reward with a movable stuffed animal.  Cole sat great in the highchair they put him in.  He unfortunately didn't want to turn his head all the time.  So thy figure in 6 months he will be better to sit through the test.  They did assure me that its not his hearing keeping him from speech.  If any one has to bring their toddler for a hearing test i would recommend Coastal ENT office in Neptune NJ. 

Our next appointment today was for speech.  This didn't go as well as I would like it to have gone.  I addressed my concerns for apraxia and of course was told he does have a lot of signs.  The therapist explained that's he needed more sessions with Cole and while they are this age she doesn't like to label them.  That they need the labels more when they go to school.  So she set Cole up to see her 2 times a week.  So now my poor son has EI here 4 times a week and then 2 days a week he will go to get speech at the hospital.  I did express my concern for a label for the fact that I don't think Cole should have to have 6 therapy sessions a week.  So we will do this a month and reevaluate it again.  I was really hoping to hear that I was just worrying too much and that my son was a late talker.  So I guess now I need to regroup and process what will be happening now.  
I hope that any mother out there with a child that is not speaking get the help they need.  That they know to fight for what they believe is right for their child. 
On a side note Cole started his Omega-3.  I plan to journal how things change with this.  I know that the omega-3 helps support brain function.  Lets hope this helps Cole.

Pre-Evaluation Day

So I skipped blogging yesterday since Cole had me blowing bubbles for over and hour straight.  With his new b sound comes the need for bubbles to be blown since that is what he is trying to say. I love that he has a new sound and hope that this continues.  He can also mouth the word bubble just no sound with it. He is working so hard. 

So tomorrow we see the ENT and the Speech Therapist.  I am excited for the day to come but also nervous.  I feel like I have been waiting for this day to come forever.  I also am worried that if that don't diagnose him that we will be doing the we need to see him back.  I would like this to come to a full circle and have some answers tomorrow. I know that no matter what happens that I am doing the best that I can right now and will continue to do what i need to until Cole is talking. 
So until tomorrow......

A new month

April is here and with warm weather coming, so will advancements with Cole.  Today he was able to mouth bubbles but not get the sound out.  It makes me so happy that he was able to do this but sad that no sound came with it.  He tries so hard on something that comes so natural to most children.  I know that I am not the only mother that feels this way but at times I feel that I am the only mother.  Cole also showed Noreen (from EI) that he can now sign peg with little assistance.  We plan to continue with sign language and also trying to get Cole to speek.  We also worked on his mouth muscles.  We used sour candy spray on the battery operarated toothbrush.  I didn't know if he would like the spray but he really enjoyed it.  I plan to try to do this 3 times a day.  Hopefully this will help. I also plan to research more ideas to use with Cole. If anyone has a suggestion I would  love to hear it.
Tuesday we will start Omega-3 since studies show that it helps children with speech delay.  My Aunt was so nice to send us that and a new multivitamin.  After cafefully looking into different suppliments my husband and I decide that this would be our first suppliment to try.  I also plan to speak to his doctors on anything else he should be taking. 
2 days left until his evaluations.

March 31,2011

I had no title for today because it was just a few different topics that I wanted to cover:

I was so happy to hear today that Melissa who is one of Cole's new DI has seen progress with him in only a week time.  Of course it was in his sign language, interaction, and eye contact.  I will take improvement any day even if its not in speech.  I know once we get Cole to talk he will never stop because he will have so much to catch up on.  I know that Cole finds joy in all his learning toys especial when he can show me how well he does without my help.  Its only been 3 months that Early Intervention has been working with Cole but in those 3 months he has improved so much.  I don't know where we would be now with Cole had I listened to people tell me to leave him alone he will talk when he wants.

Next I wanted to ask: Does anyone feel like they can't get anything done in life that they wanted because your child brings you toys to play with.  We taught Cole that if he wants something to bring it to us. So if he wants a drink he brings his empty cup, food he will bring his snack cup and if he wants to play with a toy he brings it to me.  He has yet to understand the phase "wait a minute".  He will give me his cup and if I put it next to me he will pick it up again and hand it tome again until he gets what he wants.  I love that he does this but wonder do I have to do everything I need while he sleeps.  So I guess I need to prefect this system we have.

Last but not least I noticed I am worried and excited about this coming Monday.  Cole has his hearing/speech evaluation.  I wonder if we will have answer and this will finally come to a full circle if we will be hanging in the wind again.  I think wondering what the test will show is worse then handling the diagnoses.  At least that's what i think.  I truly would just like to know if we are doing everything we can to help him. 

Does anyone feel this way? If I have done nothing else in these past few months i have researched and filled myself with the knowledge I need to make sure we get a diagnoses for Cole.  I will continue to educate myself to help my son in any way.  With that being said I decide to end this post with a quote

The beginning of knowledge is the discovery of something we do not understand. By Frank Herbert

Amazed

I saw the most amazing article today about a 12yr old boy who was diagnosed with autism and has a higher IQ then Albert Einstein. This boy's mom chose not to listen to the doctors who diagnosed him and worked to unlock her childs' passion. When she did that her son just blossomed into this educated boy he is now.  It made me believe that if I work hard and find Cole's passion he could go as far as that boy.  It gave me the boost I needed to try to unlock Cole's passon.  So far it seems to be gold fish crackers lol.  If I do nothing else in my life I will know that I did everything to help Cole turn in to the great man he is meant to be.

Tomorrow we start back up with EI.  He has 2 days off this week and I know tomorrow he will do just as well if he only had the 1 day off.  This week Noreen (his DI) and I plan to introduce new methods to work on his mouth muscles. 

I still have days when I am sad for Cole and the struggles he will have to deal with.  I still have days when I feel like I am the only one who is going through this.  It helps to be reminded that there are a lot of other people with the same struggles.  I also know that Cole is a determined young boy who will do whatever he needs to succed in life.  So on that note surround yourself with support of family friends or even support groups. Strength is in numbers. 

Trying so hard

Its amazing how smart Cole is and yet how hard it is for his words to come out.  Last night Cole knew what time I came home from school and was waiting at the door for me.  He also was able to shake his head NO when I tried to get him to blow on a party horn. Yet when we are trying to get him to repeat vowel sounds it was just too hard for him to get them out.  Last night when we tried to go to bed, Cole decide he wasn't ready for bed. He was running around our room in the dark.  I figured it would be a good time to practice his vowels, since he was getting the rest of his energy out.  Even though I couldn't see his mouth I could hear him trying.  He was only able to say "OOO".  We tried the a and also e which he has said before.  I heard him trying to get the vowel out but only getting a little noise. I praised Cole for trying because I want him to know I am proud that he is trying.  As frustrating as it is for me that he is not talking its more frustrating to him that these words or vowels are not coming out.  I just keep trying to tell myself that in time we will know why the speech delay is happening.  We have 6 days until he goes to the ENT and speech evaluation. 
So just remember that as frustrated as we are that our child(ren) are not speaking they are just as frustrated.  I have truly learned the meaning patience.

Progress made

Today brought progress with Cole.  He is working hard on vocalizing his vowel sounds. He seems to realize we want him to talk when we are saying things to him.  He enjoys his time with his new DI that is coming.  He is focusing more on the task at hand and seems to be getting better at trying to signing peg.  We are currently trying to use sign language as a way to communicate with him.  I currently sign milk, juice, cookie, cereal, hunger, mommy, daddy, please, and thank you.  Cole currently knows how to sign, piece and car. He is working on peg and bubbles with his DI. 
I would also like to mention a great book that could help any arent that has a late talker. The book is The Late Talker What to Do If Your Child isn't Talking Ye by Marilyn C Agin M.D, Lisa F Cheng and Malcolm J Nicholl.  I am still currently reading this book but so far its touches base on different speech delays including late talkers.  It also talkes about different help you can get as far as doctors and therapist that can come in help with speech.  It explains that if you have a child in the school system how you can work with the school to help your child and get them the best support from the school.  It goes over how to work with your insurance company to get them to help cover some of the cost if not all. My favorite part is how it goes over the fustration your child has and how to help relieve it and how you as a parent may be fustrated and how to cope wth the feelings. 
The count down begins for when Cole goes for his 3rd hearing test at the ENT and his Speech evaluation.  We have a week to go.  I am hoping to get a few answers to why Cole is not speaking but also know that this has been a process.  These appointments could lead to follow-ups before we truely get the real answers.

Welcome

First I would like to say Welcome to anyone who is following this blog.  I started this blog for parents going through the same thing or close to the same thing I am.  My son Cole is 19 months and barely speaking. He did say mama, Dada, and no no until about the age of 13months. He also developed great selective hearing. At his 15 month appointment with his doctor I spoke to her about this and she recommend seeing an audiologist and also Early Intervention.  Since then we have Early Iintervention here 4 times a week and speech therapist once a month.  He has also had 2 appointments with an audiologist who has now recommended him to an ENT doctor. My son has shown signs of a speech disorder and we are waiting for his doctors appointments to confirm or at least give us an idea what is going on. He does say some vowel sounds but that's about it. He has made a little progress with Early Intervention but the process is slow.  He tries really hard to try and repeat the sounds and is sometime successful.  I have emailed a few people who have talked about their child having this disorder but they have yet to respond back. With that being said I start a blog for parents who have children that could be a late talker, or have a speech disorder.  I understand how frustrating it is waiting for appointments and having a gut feeling something is not right.  I also know how it feels when people say "he will talk when he is ready" or "I know someone who didn't talk until the age 4". I wanted a place were parents can email someone to talk to and also a place to share information.  I plan to blog once a day on information, Cole's progress, or just any topic that is brought up to me. I plan to respond to all my emails sent to me and if this helps even one parent it will be worth all of this.
Have a wonderful day and remember your gut feeling will never steer you wrong.