Wednesday, March 10, 2010

From Signs of Love to Words.... Our Journey Part 3

It isn't my fault that Joshua has apraxia, but it is my fault that I didn't get him the help that he needed when I started to notice the problems. I will live with that for the rest of my life. I will always feel as though I let him down, and I don't think I will ever be able to take the compliment that I am a great mother and actually feel it as the truth. Everytime I hear those words "great mother" it flashes pictures of him in my mind of all the times I thought this isn't right... of all the times that I shrugged it off as "he is going at his own pace." As I write this I am crying because this is the first time I have ever written down how I feel I let him. He needed me and I didn't beleive in myself enough to stand up for him. I remember yelling at my own mother when she would try to bring up the subject that something could be wrong. What? No! He is smart. He understands me. All children grow at their own pace. I did take him to the doctor, and he said he is fine... no I don't think he needs a second opinion. MOM JUST STOP IT AND LEAVE ME ALONE! I AM THE MOTHER! I didn't want to think something was wrong... but the morning after Peyton's Dr's appointment I sat on my bed and looked at him and he was talking his usual "ahhahhhahh hhaaahhaahhha" and I burst into tears and accepted that he needed help.

Having a world class neurologist telling me I needed to get a referral for Joshua to a pediatrian to find out what could possibly be wrong was my wake up call. We know something is wrong.... but the question is what? I call the doctor's office, I book an appointment and plan my questions, my concerns and my requests. It is important I have found to ALWAYS go over what you are requesting of your doctor in order for you to get the best treatment. Unless you have the worlds greatest doctor (which we do now) who will read your mind and send you or your kids for the tests required, do the lists. My concerns were:

-He is 2 and not speaking
-He was in a car accident and hit his head
-Can I get a referral to a Pediatrian?
-What is my next step?

I got to the doctor' office, and I explain what has been happening. I said he is 2, hasn't said a word and I would like a referral. That was followed by a very stupid look in this doctor's face and a "all children develop in their own time", it was a fight and an argument to get him to answer these 4 simple questions.SIDE NOTE: If a doctor won't answer your questions then he/she can't answer your questions, I have learned this along the way. He finally asked me to wait a little longer just to see what would happen; that is when the big mama bear came out... I demanded a referral, I explained that had I listened before with Peyton I wouldn't have a baby girl and that if he wanted me to leave he better get that referral, and not to any doctor but a specific doctor I had talked to.

I went home annoyed and mad, this wasn't the first time I had brought up issues. When Joshua didn't walk I took him to the doctor and asked for a referral to a pediatrian, I was told I was "over reacting" and that " new moms do this." If you take nothing from my writing other than this I will be happy. NEVER EVER let a doctor make you feel as though you are a bad parent for having concerns, just because the doctor doesn't see it does not mean it doesn't happen, or that something is not wrong. Even new moms know when something is wrong...the difference is making a move and advocating for your child. I let this crap go on for way too long and it was going to stop. If he thought I was bad before he NEVER saw me mad...

I waited for weeks and finally called his office and they said that the doctor that I had requested was booked for months (if I remember correctly it was 3-4 months.) However, if I wanted his co-partner who was in the same office then I could take Joshua to her. I thought why not they are in the same office so they could consult and if I ever needed I could switch Joshua over to Peyton's doctor.

The appointment was in January, I went to the building and as I read the list I realized they had booked the appointment with a lady who was yes in the same office building... But 3 floors away from the doctor I had requested. I was already there so I decided to give this doctor a chance... We walked in, waited about 30 minutes then we met this doctor; and so that it becomes a little less confusing lets call her Dr.X. She sat with Joshua watching him for about and hour and a half and then asked me to get his hearing checked, and eyes checked. She referred me to The Center For Child Development, I told her that I had already done all of that. His hearing and sight are perfect and he has been put on the wait list for a speech therapist, however as the wait was quite long we were going to try to find a way to hire a private speech therapist (otherwise referred to as a SLP). Dr.X took a long look at me and said, "I am thinking it could be autism" I chuckled as I had heard this before and usually from the inexperienced daycare workers who think that they have the ability to diagnose anyone because they work with children. So I replied with, "no he doesn't... that is just the flavor of the month diagnosis... look at him he has one out of all the signs. He doesn't talk" She said that she would call around to other Dr's to get their opinion but her opinion was "be prepared to NEVER hear him speak." I was crushed... and sobbed the whole way home. I want her to be wrong so bad... but is she right?


  1. My daughter was 3.5 when she was diagnosed with apraxia, and the first thing I can tell you is Doctors are useless. They don't know what apraxia is. I am sure their are many kids that are misdiagnosed with autism by doctors because they have apraxia and no other signs.

    What was great for us was getting in to see a good SLP. A decent SLP will know what apraxia is, and how to help your son. Doctors are not needed in Canada to diagnose apraxia. The SLP will be able to assess if it is just apraxia or if there are other concerns. Here in Sask the SLP had our daughter assessed by a team. The working diagnosis was apraxia, and the team included one doctor (that actually knew something), a occupational therapist, music therapist and psychologist. I imagine they would have a similar type of system in BC.

    As for the "Dr's opinion was 'be prepared to NEVER hear him speak.'" The doctor should learn to shut up and learn more about apraxia before she spouts off like that. Never go see her again.

    My daughter had only a few sounds when she was diagnosed and with speech therapy she is now making good progress. She is not talking perfectly clearly and still has a long way to go but I can see a day when she will be talking clearly and be understandable.

    Good luck in your journey.

  2. My daughter was around 3.5 when she was diagnosed with apraxia. She had only a couple sounds when we finally got her in to see a speech therapist. We had gone through the Doctor's, got her hearing checked etc etc. The first thing I can tell you is Doctor's are useless. Most of them have never heard of apraxia and if they cannot find a physical cause for the delay they do tend to say 'Autsism'. As for the doctor you saw, never go see her again.

    The best thing that happened for use was getting into see an SLP. Once we got in to see her she was able to give us a working diagnoses of apraxia. She started speech therapy and scheduled a interdisciplinary evaluation of our daughter at the rehab center that we have here in Regina. There was a doctor (from the rehab center that actually knew something about apraxia), an occupational therapist, a music therapist and a psychologist. They diagnosed out daughter and looked for other problems that might exist. I am sure BC would have a similar approach.

    Depending on how your son responds to speech therapy will depend on how often you can get in. We started with once a week for 45 mins to an hour. My daughter is 4.5 now and she can handle more so she gets 3-4 sessions a week. We hired a private speech therapist as well which has been great.

    The other thing an SLP can do is fill in the Disability Tax Credit for you. That money can go a long way to help pay for private speech therapy.

    Good luck in your journey.

  3. Thank you Lee.... I have just started writting this blog... but there is a good middle as he does speack now. Thank you so much for reading my blog and adding your comments. Joshua does have a great SLP and we lover her. Please continue to read.