Meet Jackson. He is an energetic and joyful 12 year old boy with Autism and verbal dyspraxia. He loves penguins, Santa Claus and watching ESMR videos. He is non-speaking and uses a program on his iPad to communicate his basic needs and wants.   Verbal dyspraxia makes it difficult for Jackson to coordinate and move his jaw and mouth muscles to produce speech. The messages from his brain to his muscles get confused on the way.  Although Jackson received traditional speech therapy since the age of 18 months, it has been largely ineffective.  The only speech therapy that produced any results is called PROMPT therapy.    This type of therapy specifically addresses motor planning and control of the oral muscular movements, while eliminating unnecessary movements, such as jaw sliding and inadequate lip rounding.  The few words Jackson is able to say are a credit to PROMPT therapy. 

Due to Covid and financial constraints Jackson has not been able to receive consistent PROMPT therapy in a number of years and as a result his speech has declined.  With the help of Jackson's new and incredible school,  we have been able to secure a PROMPT therapist who sees him 2x per week for 30 minutes.  Each session costs $135, that's a little over $1,000 most months.  In addition to speech we have an ABA therapist 2x per week.  The cost of ABA is $400 a month.  Adding to that the cost of his private school tuition which is currently $127,000 a year or $10,583 a month for a total of $11,983 a month for Jackson's therapy and specialized school.  Not to mention the special education lawyer fees paid to get him the private schooling he needs.   The cost of raising a child with special needs can be insurmountable.

So how do we do it? We work, A LOT.  I have a wonderful job as a contractor with NYS where I help other families and individuals with special needs.  Luckily I am able to work around Jackson' schedule, which means I end up working 7 days a week.  Jackson's dad is a small business owner in NJ and helps families with retirement planning.  Even with our income, it is a struggle.  We had to take out sizable loans this year at double digit interest rates due to the current economy.   Fortunately, we fight to get reimbursed for Jackson's private school tuition (after legal fees and time in court) and usually win.  However it is still an out of pocket expense for us each and every year until Jackson turns 22 and there is no timeline for when we get reimbursed and no guarantee we even get reimbursed. We could wait 2 or more years for reimbursement or possibly not get reimbursed at all.  Unfortunately the cost of all other services, such as PROMPT speech and at home ABA therapy, are not reimbursable. 

We humbly ask that you help us in our goal to give Jackson the best shot at an independent life.  The more help Jackson receives now, the less he will need as an adult. The thing that worries us most, as special needs parents, is the question of "what will happen to Jack when we die."  If Jackson were able to verbally advocate for himself, even as simply as saying "bad or hurt" to identify something went wrong outside of our care, it would be a tremendous weight off our shoulders.   Please help us give Jack that fighting chance to live a happy, healthy and independent life.