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.