Tips from experience

Tips that would be helpful

The most important tip and reminder is the 4 R's!

RESEARCH RESEARCH RESEARCH
Don't be in denial about a possibility diagnosis- the other could help you get your child's services that are needed
Reach out to other parents

apply for some services that maybe needed later in life very early as there may be a wait list

Charts to help keep track of progress and goals (you will need to have Adobe they are PDF fiiles) Program charts Taras website final.pdf
KNOW THAT YOUR CHILD CAN COMMUNICATE IN SOME WAY
USE PECS (PICTURE EXCHANGE SYSTEM
AAC DEVICE
SIGNING (SIGN LANGUAGE)
GESTURES
COLORING/DRAWING
BODY LANGUAGE
FACIAL EXPRESSIONS

KEEP AN EYE ON BEHAVIORS
Chart them what happened before, after and during (this could give you the reason why it happened)
what is being communicated to you? not feeling well? over stimulated? Bad experience in the area/building? Bad experience with that person? Overly excited? Wants attention?

FIGURE OUT BEHAVIORS THERE IS A REASON: THAT YOUR CHILD IS TRYING TO EXPRESS SOMETHING TO YOU

In home therapy hints and tips

have video cameras up and running to be sure that therapy is being done the way it is suppose to USE AS QUALITY CONTROL TOOL
make sure that YOUR expectations will be followed
Be involved
keep communication open
be specific as to what you are looking for and want
do not feel bad to NOT allow someone to come into your home if you are not comfortable with that person
watch your child to see if he/she interacts with the person
keep progress notes
make sure that hours are scheduled to be made up before granting the day off OR make sure therapist makes hours up before getting day off
have a sick policy if one is needed
be ready to answer questions
use the above charts to help write up programs and what you would like
keep all records, papers, handbooks, information for the full time your child is receiving therapy you may need it to defend your child's services
know your states laws and regulations for in home therapy (WI has them online)
REMEMBER ALL THE THERAPY YOUR CHILD RECEIVES WILL AFFECT THEIR LIFE AND THE CAREGIVER
QUALITY THERAPY IS A MUST NOT AN OPTION

Education hints and tips

Keep all conversations with school issues to written through a notebook and email
Know your child
Get evaluations when YOU feel they are needed
Make sure you are very familiar with Section 504, LRE (least restrictive environment, IDEA, NCLB (No Child Left Behind) Laws
If your child is non verbal or unable to tell you what happens during their day at school get a daily notebook into the IEP to be filled out by all staff that is involved with your child
Look at the last IEP to be sure that there is progress being made
Keep a calendar for ONLY times, dates and events that happened during any kind of contact with school personnel
Do NOT be afraid to file a complaint it shows the school that you are serious, but be sure that you have everything to PROVE the school has done wrong.
Know that your child with special needs CAN stay in school until the age of 21

Medical hints and tips

Get a second opinion by a different dr if you feel what you are being told is not correct or something you do not want to hear
Before doing surgery always get a second opinion (I saved my daughter from having hip surgery that was unneeded, due to a second opinion
Keep all records that you receive as you may need them later to look back for clarification/ history
Get as much therapy as possible, there is NO age limit if there was then how come kids have to go to school to LEARN after the age of 5? That window that many doctors talk about is a bunch of garbage, we are all able to learn at any age. Tara is Proof that there is NO window, she continues to learn and grow and mature!

Life After 18

(I'm not at this point but will get more points form other parents that have been or are almost there)

get on any waiting lists as soon as possible as there could be at least a 5 year waiting list for a workshop/job
get guardianship rights if your child is not able to care for their self, make decisions that are life affecting
Be sure that there is a QUALITY care person/group home that you can trust to care for your child when you no longer can