Sunday, January 18, 2015

Inside that Special Needs Village: whom to listen to and whom to ignore

Since we are going to be spending time discussing how to handle your child's special needs village I have decided to create a list of personnel that are essential to a well functioning machine. I have found that at any given time I have had at least half of this list (at times in life almost the entire list in fact) working in concert making certain that the boys functioned to the best of their ability. By the way the list is as valid today, for my young-men, as when they were in pre-school :

YOU
Psychiatrist
Psychologist (can be school personnel not only private; can include private talk therapy, CBT, social skills, circle of friends, etc)
Social worker (can be school personnel not only private)
Guidance Counselor (usually middle school and high school. Also becomes adviser in college and graduate school. Some high schools have Vice Principals that specialize in special education. This may also be your go-to person if your child is having issues either behavioral or educationally.)
Behaviorist (this is the person who takes your child out into society and teaches them how to be independent out in the world at large; life skills)
Pediatrician (preferably a developmental pediatrician if possible)
Internist (when your child outgrows the pediatrician it is essential that their main doctor understand that they have special needs and they will need to deal with them a little differently than with other patients) 
Job Coach  
Endocrine doctor
Neurologist
Nutritionist (because many of our children either have allergies, celiac disease, specific diets due to any number of issues etc, it is important to have someone with knowledge of  how food works into our daily lives. Doctors are not given the education to do this effectively. And making certain that our children get the right amount of nutrition, while taking care of their food needs, is essential to healthy growth.)
Occupational therapist
Physical therapist
Speech therapist
Special education teacher
Regular education teacher (includes professors in post-secondary education)
Special education director (both k-12 and college/graduate school. In post secondary education this person will help decide what is the best accommodations your child will need in college and graduate school. To this extent if there is a problem in college or graduate school you may also have to work with the Dean of Students as well.)
Para professional
Educational consultant
Tutors
Religious instructor and/or Youth Group leader (yes this is important for inclusion)
Sports coaches
After-school activities teachers (anything that your child enjoys doing that will add to their overall happiness and well-being, such as a piano or guitar teacher)
Advocate
Lawyer (estate and civil rights)
Family (while not all family understand, or want to understand the situation, some do and they should be part of the village. They can be a great support system.)

Note: I do not include anyone that provides therapies or drugs that are outside the FDA and medically approved regime for special needs persons. I have a huge issue with charlatans and those that pray on special needs families. Be careful.

People who are not necessarily part of the village, but may be essential to understanding how your child is functioning. Please note it is important to remember though, that the experiences that people talk about are particular to their situation. It does not mean what helped them or their families will work for you. But understanding how someone feels in any given situation, especially when your child cannot explain their feelings, both physical and mental, is important to having a starting place inorder to support them properly:

-Other parents of special needs children (both IRL, and on-line support groups): learning how other parents may have handled a particular situation is helpful in knowing when to get your warrior-parent-self in gear.
-Special needs self-advocates: sometimes talking to and getting advice from those adults who live with a particular special need is a great place to start in understanding your child. I found it incredibly helpful when I learned how painful sound is for someone with auditory processing disorder. It's not simply the fact that someone can be slow on the uptake when processing oral information, but at times certain types of sounds, particularly associated with decibels (which don't have to be as loud as you think), can cause intense pain as well.
-National and international organizations that provide assistance and understanding for persons with special needs. (This of course depends on the organization. Simply because an organization says it supports people with special needs doesn't really mean that they do.You will have to decide whether a group is appropriate for you even if it is not appropriate for someone else. Yes there may be some politics involved as well. As I mentioned in deciding who to choose as a parent coach, you need to be on the same page as the people involved in these organizations to get anything out of the support systems.)

People who will never be part of the village:

Trolls: be forewarned that there are any number of people who think they know about special needs and continue to harass any number of persons discussing special needs on line and IRL. They attempt to get a rise out of you and try to make you unsure about what your child's village has decided is best for them. Remember that trolls, who could be anyone from a family member, a school district committee member, to an anonymous person on the Internet have no control over your child's future. Only you and your child's village have any say over that future.

The sad reality is that there are any number of people who also think that simply because they have an opinion that it is valid. They also do not have an understanding of the law, which tends to be the case. When MrGS was brought back in district there were threats to sue the district for ruining their child's educational ability to get into an Ivy League College (I kid you not). Luckily the Special Education Director in our school district told these horrible people that the law is on the side of the disabled child and that if they want they can sue. But not only will they loose they will end up paying the districts costs.

I have been told on more than one occasion that special needs children should not have the rights that they do. This is usually accompanied by an assertion that tax-payers should not have to pay for their education or actually questioned why special needs persons need top notch education, when all they need is to get along in the world since they will not 1) go to college, or 2) never be independent, or 3)be a drain on society for the rest of their lives anyway. (PS I live in a really blue state.) Under these circumstances it is best to remain calm and try to explain to these people the reality of life. Many times it is merely a misunderstanding of how the world works, special needs, education and the purpose of community. Unfortunately, as well, there are many in this world who are simply ignorant and choose to remain so. Sometimes you need to simply shake your head, feel sorry for them and move on.

*****

Meanwhile over the following weeks we will be discussing the personnel in your village: Who they are, what they can do for your child, and how they all interact together.