Where Do I Start?

One of the most difficult things about being new to RTS is all the unanswered questions.  Before you read further, take a deep breath and relax.  There are many families who have contributed knowledge, experience and their caring ways for our special children for your benefit.  Answers will come- right now just love your child.  If you do that everything else will fall into place. 

Almost all new parents will tell you that the initial stages of finding out that your child is special are the most difficult.  The primary goals of our foundation are to shorten the time frame for acceptance and allow you to love your child without burden.  I speak for many families in saying that our children are wonderful blessings in their innocence and happy nature.  We all wish a speedy journey to that point for all that are new to the RTS family.                                                                                                                     

Rules for New Parents:

For now, think about today.  It is dangerous business to project into the future because nobody has those answers and you can drive yourself crazy trying to figure it out.

Don’t overdose on information.  Trying to learn everything quickly can be counterproductive.  

Don’t allow yourself to be intimidated by terms relative to medicine and therapy that you don’t understand.  If this means grabbing a doctor by his necktie and telling him to speak English instead of practicing his vocabulary on you then go ahead!  Well, on second thought, let’s try to do without the grabbing.  

Don’t panic.  As responsible parents, you will be making decisions the best you can.  Then WHAM! Somebody will raise an issue you hadn’t considered.  Trust me, nobody thinks of everything.  

As of today, there is not a cure.  So enrolling your child in every new therapy and educational program is not going to make it all go away.  However, if you do try every intervention mentioned to you, you will end-up financially broke.  Remember to maintain a balance for your child’s well being and your well being.  

Know from this point forward that there is a well thought out support mechanism for you and your family.  RTS families look out for each other.  

 If you start to feel bad, re-read the rules!  

Checklist

  • Establish emotional support/Join a Parent Group.  

  • Set-up a binder, folder, or file drawer with your child’s medical history:  dates, reports, app’t summaries, etc.  Contact Michelle Farrell and she will send you a free master file, set-up to record your child’s information, along with pamphlets about RTS. 

  •  Establish a Primary Care Physician.
    •  Are you comfortable speaking with your primary care physician about RTS?
    • Will they accept information from you about RTS?
    • Will they make referrals to specialists willingly?
    • If you live near a major medical facility, will they be willing to refer your child there?
    • Are they willing to work with you on an ongoing basis? 

  • Schedule an interdisciplinary (physician, therapists, psychologist, social worker) team evaluation.  

  • Schedule a dentist app’t for children over 3 yrs.

  • Schedule a speech therapy evaluation. *Speech therapy is extremely important for children with RTS.

  • Schedule a physical therapy evaluation. 

  • Schedule an occupational therapy evaluation. 

  • Schedule an Early Intervention Evaluation (0-3 years).

  • Schedule an evaluation by the School System (3-18/21 years).

  • Print out “What is RTS?” to give to health care providers and others involved with your child.  Or make copies of these pamphlets that come with the Master file from Michelle at the Special Friends Foundation. 

  • Obtain copy of your health insurance policy and become familiar with it.  

  • Investigate Medicaid eligibility.

  • Investigate Social Security eligibility.