Special Help for Special Needs

Squeaky Wheels

People who get things done are squeaky wheels.  This is especially true of parents of children with special needs.  The reason squeakiness turns into results is  because you are holding others accountable. 

If it becomes apparent that you are going to call me every Friday asking for an update on your son's progress, I am much more likely to diligently track the data during your son's therapy session.  If the inquiries into progress only happen at an annual IEP meeting, you will only get a summary of what has happened over a long time period and data tracking will not be at the top of my priority list. 

If you are concerned enough about your child's progress to regularly check in with teachers, therapists, and administrators, good things will happen for your child.

On the flip side, therapists, teachers, administrators, doctors, etc, who make it their mission (diligently squeak) to interact with parents can often persuade unmotivated parents into action on their child's behalf.

Bottom Line:  If you want your child to be a top priority in the very busy schedules of others, you have got to become loud, and predictable in your squeaking.

Networking

Many people find their pediatrician, dentist, piano teacher, plumber, employees, employer, favorite blog, new restaurant, a new book, new website, etc. by chatting with your friends.  They may be your real life friends or your virtual friends, like the people you meet on facebook or twitter. 

 

The bigger your network, the more sources of information and referral you have.  This is one of the reasons for the success of the new social network websites.

 

One of the problems that I run into, almost daily, is that parents of children with special needs feel very alone.  Even the parents of children with one of the more frequently diagnosed disorders or challenges, like autism or down syndrome, often find themselves with no where to turn. 

 

Many try support groups for a while, but many support groups struggle because it often serves as a place for information, but are not that great at being a day to day source for encouragement, hope, ideas.  The problem with this approach to networking/support groups is that each person joins the network with the sole idea of “what’s in it for me?”

 

As an alternative, I suggest that the most successful networks are those where each person is focused on helping someone else; they are not focused on themselves.  Does this seem backwards?  It’s not, this is how it has to work. 

 

Each person brings unique experiences, information, and perspective to the network.  As you offer your knowledge, ideas, and resources, others will readily do the same for you. 

 

So, if you are feeling overwhelmed, isolated, and without a network then find five people to start helping.  If possible, find someone with a child that has challenges similar to the challenges you face and offer them the help you wish you had. 

 

Of course, it will be challenging at first, but you will soon feel the power of the network far in excess of what you can offer your network.

A Broken System

In the past three years I have had an ongoing frustration-  The medicaid system in Missouri will reimburse a school for the services of an Occupational Therapist and a Physical Therapist, but will not provide any reimbursement for the services of a Certified Occupational Therapy Assistant or a Physical Therapy Assistant.  On the surface this sounds reasonable. Why would anyone pay for the services of an assistant when a fully credentialed therapist could do the same thing. 

The root of my frustration is this:  There is a state-wide shortage in Missouri of Occupational therapists and physical therapists that are willing to serve in the school setting.  There is also a shortage of assistants as well, but not to the same degree.  By not reimbursing the schools for the services of an assistant the medicaid program is placing an unfunded mandate upon the schools.

According to the Individuals with Disabilities Education Act (IDEA) the school system is responsible for providing the services that a child requires in order to an appropriate public education.  For many students, this includes occupational and physical therapy services.  When a school is required to provide a service, but are not given the resources to fund the service the money must come from the general education fund.  Less money in the general education fund, means less money for all students and teachers.  

This behavior appears equivalent to an insurance company refusing to pay for the administration of a vaccine because the shot was given by a nurse and not a doctor.  This doesn't make sense.  The shot was still given!  In this case, the therapy was still provided.  

The time is now

Many schools are starting back this week.  This is not only a fresh start for students, but parents also get a fresh start at being involved in their child's therapy services at school.

I encourage parents to rededicate yourselves to being active in your child's therapy.  One of the primary reasons some kids are in therapy for many years is because the only person who works on the goals is the therapist.  Of course, just because parents are active in therapy does not always mean that the child will graduate from therapy faster, but it sure doesn't hurt.

Need some direction on becoming more active?

1. Ask your therapist for work that you can do with your child at home.
2. Ask to sit in on therapy sessions.
3. Set aside regular "therapy time" at home.  (If you can do this for 10 minutes a day you will see dramatic improvements in most kids)
4. Look for opportunities to praise your child for using their new skills.  Many kids will do almost anything to please their parents.
5. At the IEP meeting, ask for more frequent progress notes from the therapist.
6. Ask the child's teacher how the goals are being addressed in the classroom.
7. Start a therapy notebook that goes back and forth between home and school