PADF - Parents Awaiting Diagnosis Need Friends

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Our Steps to Diagnosis

 

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If you feel you child might have a learning disability, Autism or some mental disorder you can expect a lot of confusion and steps to lead you to a diagnosis and in getting treatment.  Please see our guideline below to what you could be expecting to go through - we found it hard to know where and who to contact - we are hoping this helps but is only a guideline to help new parents see what might be involved:

 

  • If you feel there is a problem or have had any indicators that there might be a delay or a problem with your child first thing you should do is mention it to an outsider of the situation to see if they are seeing it to.  Sometimes as parents we can not be objective and need an opinion of someone you trust.
  • If you are really concerned, you should see your family doctor.  This sounds easy, but most times, indications of disabilities are subtle - especially in higher forms of Autism and can be brushed away as a faze the child is going through at the time.  I found most of them could be brushed away as funny or almost unnoticeable.  YOU ARE YOUR CHILD'S ONLY ADVOCATE.. if you are concerned you should keep persisting with your doctor.  I found for us, if Faith was having a good day, then everything could be explained away and the doctor would miss most of what we were seeing. Sometimes a 20 - 30 minute appointment would not be enough. Do not let them tell you it is nothing - it very well could be nothing, but if it is of concern to you and you are worried - you can pressure to have them check it.  I didn't at first and as a parent your best instincts are often right - trust yourself.  Now having the diagnosis - I did know all along but others saying it was nothing or brushing it off let it go undiagnosed for 4 years.  Years which we could have been getting my child help.  I had to get very pushy to even get it done.  DO NOT GIVE UP, TRUST YOUR INSTINCTS!!  Sometimes, other health factors such as hearing loss or other issues can help get the diagnosis. 
  • One of the best pieces of advice I got first off was from my daughters principle at her grade 1 school, she told me that it was going to start getting very overwhelming in meeting doctors, specialists, contacts and medical personnel so she suggested I start a binder with sections for contacts, school information, doctor information, recommendation letters, tax information, receipts and everything you will be given concerning conditions and paper work that you will need at a lot of your appointments.  Without this book, I would have never been seen by most people or doctors as they want dates, times, names and information us non-doctor folk can't understand.  School information becomes important too for I.E.P. information (Individualized Education Plan at school) and teacher information, school info.  It's been one of my best resources and keep everything together that you can carry with you to each appointment.  GET A COPY OF ALL TESTING, ASSESSMENTS, RECOMMENDATIONS AND LETTERS FROM SCHOOL AND MEDICAL APPOINTMENTS FOR YOUR BINDER.  A lot of times they will not just give you information - you have to ask for it.  Sometimes they are limited to what they can give you but it is very important that you know everything and have the information you will need as you move through the process.  You might think you don't need it but you never know how important it is until you don't have it.  Don't rely on others for the information get it yourself so you have it.  Later, down the road it might be a huge piece of a larger puzzle if your child has children or your child needs more medical information and you are not present to give out that information.
  • Once you have started the process, you will be given a ton of numbers to call and information - most very overwhelming. You will be probably sent to a couple of specialists to rule out certain issues, health wise and probably sent for some testing.  In our case, we had specialists and CT scans done to rule out brain tumors etc.  Very difficult time and very confusing.  If you are at a specialist and they ask about developmental issues and they are present - keep requesting the child to be checked.  Again, you might need to be a bit forceful but again, only you know your child.  The doctors can't expect to know within sometimes a half hour appoint.  I found by making lists of things I was noticing helped as I would not waste time with the specialists and to make sure I did not forget information they might need.
  • Once you can get the assessment, make sure you have all the information for the Psychologist.  They will need tons of information to assess your child.  Most times it will take a ton of questions and questionnaire's.  Sometimes they give you a guideline of what it could be, so if you think it could be something else based on your research - tell them.  They might be able to rule it out for you or confirm your findings.  The more information the better.   Be prepared for hard questions and questions that date back to before birth and family tree information.
  • Once you get the diagnosis, you will be given a ton of numbers to call and information - most very overwhelming.  Most times having a friend, or a group to talk to helps.  If they give you a number for a social worker or intake worker - call them immediately to try to get set up in programs. They can guide you in the right direction.  We have a listing of some resources that have helped us on our resource page and we are always looking for more if it benefits our other friends.  One of my favorites just after getting diagnosed with Autism was SCS Ottawa under Autism Information.  I called them and they took over for me as it was all too overwhelming.  They ask you a few questions and ask you for a copy of  the assessment information and they will meet with you and go over all the local options for help in your area.  They find specific places that match your child to groups, camps, medical help and anything else required.  It is a good idea to first set a plan in action.  Depending on your situation, you will likely need treatment to help with the disorder.  Start that first because most times there are waiting lists and programs that start months later.  You will have to also fill out tax information forms as well, this will help get you some help for all the "extra's" you might need to service your child.  By filling out this paperwork, you might be eligible for tax credits and monthly payments to help.  My husband and I were floored just by the amount of appointments and what we could spend on parking for a month.  Then there might be specialized equipment or items you need for your child.  I know we needed Time Timers and visual schedules for my child.  All of that can be claimed on taxes.  Also, you might be able to claim your child's toys and activities more so than a regular child because they might be specialty toys and games that help with their condition.  If it helps with their condition you might get some back.  It's the same for medications and specialized nutritional supplements, vitamins, etc.  Also, if you fill out all the proper paperwork, you might be entitled for programs free or cheaper with the government backing you, such as respite - which is a program where you can have time to yourself to regroup.  They are qualified people who will watch your child to give you a few hours - sometimes days off.  Lots to remember I know, seems overwhelming so that is why you should call someone like a social worker to help you if they supply that information.  
  • When you are set up in programs just remember they have to be right for you and your child.  You also get overwhelmed with all the programs and information.  Remember to take time out for yourself to regroup - which usually is nearly impossible but it can be terribly overwhelming.  There will be lots of paperwork, filling things out and information you will have to complete.  Just try to get through it as quick as possible to help yourself and your child.  NEVER GIVE UP!
  • If you need a friend we are hear to listen.  Feel free to go to our contact page and send us an email or join our group.  We will email you back shortly and remember you are never alone.  We might not know exactly what you are going through - every situation is different - but we are here and we understand what our pain felt like and still feels like.  We all need friends.

 

PRESS HERE TO JOIN OUR COMMUNITY OF SUPPORT TODAY!!

 SEND US AN EMAIL HERE!

 

Follow Forums here!

 
or Facebook search: PADF - Parent Awaiting Diagnosis Need Friends
 
Twitter: @karen_sherman