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can I just cry

Eleni
June 1st, 2005, 01:16 PM
the receptionist at the developmental peds offics just called and cancelled her appointment to acess my son.

Apparently the occupational therapist who acessed him called and cancelled his appointment because hes got an appointment with some doctor i never heard of, and I dont even know. and no one informed me,

so im basically back in the dark.

for the first time in the whole mess im in tears, up till this point it seemed like i was gonna finally gt some information tomorrow, and for the second time in a year the whole process has comed to a screeching halt


it shouldnt be this hard to get a child help


im waiting for the receptionist to call back and tell me what the heck is going on im so lost i ahve no idea whats gonna happen now

Ele

lilith_rizel
June 1st, 2005, 01:52 PM
Although I don't know your situation, I can say that I have gone through things like this with Judith. Everytime she's in the hospital, it takes forever to be able to talk to a doctor or even her nurse. It really irratates you. There was one time James and I waited to talk to Judith's nurse for over 3 hours, we had to page her multiple times, and the only way she noticed that we needed to talk to her, is when I wated outside the room. Only to find out, her nurse that day, was just sitting around chatting with the receptionsit!!! :mad:

Eleni
June 1st, 2005, 02:03 PM
I jsut got a call back, its something about the new doctor works with the same agency the speach therapist and Occupational therapist works thru.

wich i dont quite get since he is receiving neither at this point.

i guss im getting a call sometime in the next day or 2 with the time and date of the appointments.

I jsut dont get why they would do all this without discussing it with me first, I mean i AM his mother, and how in the world am i to take him t appointments dont know he has.


i think the stress of all this is getting to me, its been a year and still no diagnosis.

the receptionist did ask if issac has had gentic testing, and he hasnt so i have a feeling we still ahve longer to go then I was hoping, in order to get a diagnosis.

this sucks, really badly

Eleni

Princesss04
June 1st, 2005, 02:04 PM
Eleni I am so sorry you are going through this again! You have hung in there so well to be stopped like this again. Yes, you can cry sometimes it helps! You are in my thoughts and prayers! Keep us posted! :love: :grouphug:

Writing4Fun
June 1st, 2005, 02:18 PM
Eleni, my heart goes out to you. :grouphug: The "system" can be very frustrating at times, I know. Stick to your guns and harrass them until you get answers. The squeaky wheel gets the grease, after all. ;)

BMDLuver
June 1st, 2005, 03:06 PM
I'm sorry you are getting the run around. It's quite common living in Niagara Region for everything to take forever to happen. I can't remember what your child is being seen about, I apologize for that. I know someone who is with the Aspergers Association, high functioning autism, that might be able to help you get further ahead.. if that's what it is. :o

twodogsandacat
June 1st, 2005, 03:10 PM
I jsut got a call back, its something about the new doctor works with the same agency the speach therapist and Occupational therapist works thru.........i think the stress of all this is getting to me, its been a year and still no diagnosis.

the receptionist did ask if issac has had gentic testing, and he hasnt so i have a feeling we still ahve longer to go then I was hoping, in order to get a diagnosis.

this sucks, really badly

Eleni

I see you are from St. Catharines so you may of just been moved to a health care team. If you have it’s a good thing. Hang in there. One doctor referring to another doctor and then back to see the original doctor then another referral isn't a great way to do things. The team approach alleviates that.

OK I didn’t say this because as most on this board may know…..I hate the Ontario Liberal like a cheated on spouse hates their ex but the team approach is better once you are in the system. St. Catharines has one of these first teams.

BUT and here’s the good news….there is a huge improvement in seeing specialists and a better flow once you are a patient of one of these new teams. So chalk one up for the Liberals - (I didn't say that) and there are issues such as it doesn't increase the number of doctors and those doctors come from somewhere- but you have a doctor, you are in the system.

"It will help our people to stay healthier in the first place. And it will mean we can bring more care, primary care, to people in the province including many of the orphan areas and underserviced areas that have been struggling." Smitherman

You say you feel no better off a year later and have no answers.....that may of just changed. The specialist you deal with all work together which will really speed things up once it gets going. Look at this as a possible plus make sure your questions get answered and keep us posted.

Eleni
June 1st, 2005, 03:19 PM
Hes being acessed for disabilities relating to his severe speach delay. However the ongoing concern is autisim, and thats what they were acessing for with the first developmental Ped. not sure what the new one is doing.

as for the team approach, im all for anything that gets my son help.

i was already stressed today, the fire alarm went off after the kids were in bed last night and it terrified issac and I ended up awake with him all night. Id get him settled into bed, and he would just start crying again. he has problems dealing with noises.

I think after the initial frustration ill feel more positive about it but im seeing it in a very emotional light right now.

i see instances where 12 month old babies are more verbal then my nearly 3 year old boy

and having times when hes in tears with frustration and I jsut dont know what to do to help him

its hard to see him struggle and not know what to do.

right now we just continue on, im gonna keep pushing and pushing to keep things moving along.

and just hope for the best.

its funny 6 months ago I was so concerned with jsut ruling out autism and moving on with our lives.

now im so concerned with jsut getting him help wether it be autisim or some other cognitive disability, I jsut wanna do something for him to help


Eleni

Shamrock
June 1st, 2005, 03:22 PM
Oh, no Eleni - I'm so sorry.
What a frustrating ordeal for you.. yet another delay!
You're so right - it shouldnt be this hard. My heart goes out to you. :grouphug:

I am not sure what can be done to get some action, but agree with the mention of the squeaky wheel.
Maybe it's time to make some waves, Eleni.. put up a fuss.
You've been so patient.. but this just isnt fair - to you or your son.

Good luck to you, my best wishes. :grouphug:

lilith_rizel
June 1st, 2005, 03:27 PM
Oh, Eleni, My heart goes out to you. Judith doesn't have a speech delay, but due to her suregeries, she is farther behind than most babies her age, she still has to be proped when sitting, and has only rolled onto her tummy once, she can't push herself up, when on her tummy either. So I know how it must feel thinking that there is something wrong, and they aren't developing correctly. If you need to talk to someone who understands, I will be more than willing to. you can PM me if you want. Best wishes to you and Issac. And keep your head up, atleast you are trying to get this all figured out, and it is them that are taking so long. You have done what you can up until this point. Keeping my head up with everything my Judith has gone through the past 5 months is the only way I could have made it. When we were told of her condition, not even 5 minutes after birth, I was a wreck. I thought I was going to loose her, but my husband James told me to keep my chin up, and everythig would be fine, and it was...... :grouphug: we all care for you here.abd are praying for you and your family.

Cactus Flower
June 1st, 2005, 03:44 PM
Wow, Twodogs, that sounds promising!

Prayers for you and Isaac, Eleni.
:grouphug:
:fingerscr

Copper'sMom
June 1st, 2005, 03:50 PM
:grouphug: to you eleni!

CyberKitten
June 1st, 2005, 04:29 PM
I am sorry to hear about the delay - I have been so busy and not able to post much lately but my thoughts are with you. I work in the health care system and I know wait times can be frustrating. Have you thought of consulting other doctors? Sometimes you have to go thru other channels? Calling your MPP? Calling someone you know on the hospital board? A doctor you know???

Eleni
June 1st, 2005, 04:41 PM
unfortunatly it seems this doctor and the agency that he works for, i wont say the specific name because i dont want to slander them even accidentally. Is who we need to get thru in order for the hospital to acess him, *I think*

im at a point where im still a little confused. When I get to see the new doctor you bet im gonna have a list of questions a mile long.

and hes going to answer them all or he will see how angry a worried mother can get.

as for calling a mpp, not sure where that can get me. Im sure that can help for the logn term for people in my situation, getting them to change the system so to speak, but for short term im not sure if there is anything they can do.

as for second opinions, this is the second opinion. and now we are referred back to the agency that everyone seems to go thru around here.


but at least we did find out hes on the wait list for Speach therapy and OT.

I diddnt even think he would receive OT because early on it was deemed unecessary for him[even tho i dissagreed] so someone along the way must deem it necessary, or perhaps its jsut precaution. who knows

I really dont know the ins and outs of the medical system, im just flying by the seat of my pants and hoping i land safely.

howeve it is indeed a crash course in redtape.


Eleni

CyberKitten
June 1st, 2005, 04:51 PM
An MPP can put pressure on a particular health authority - especially depending on who the MPP is (We call them MLA's here but same difference). My office gets calls all the time from MLA's and if an MLA is on the govt side and even better if s/he is a Minister or better still, the Health Minister, they can help you VERY QUICKLY!

Last yr, I had a call from an American friend whose daughter was sick in NB - I got her into a doctor that day - called the Minister of Health tho.

We have an excellent (tho the only) Chair in Autism in the country here - it is a team of people. Mind you, you do need a diagnosis first. I am amazed at the wait times tho I do know some of our adolescent psych times are long too - depends on the issue.

Hace you conssidered contacting an advoacy group - Ontario Association for Community Living for example helps people in your situation all the time. You can try the CACL web site (cacl. ca for the prov address).

I wish I was closer or you were closer to Halifax!! I'd call the Head of the Autism Center myself!