No Help in Sight

What’s a family to do when you see that debt mounting? We spend thousands, tens of thousands and even hundreds of thousands of dollars trying to help our child. We choose between giving him the possibility of independence and drowning our family in that debt – what a bad choice. Where do we turn? The therapeutic community offers fractions of the needed services for an unreasonably high price. The medical community – well let’s face it, they’ve abandoned us, even professionals can tell you that. The social support community can’t help you unless your child is violent and hurting himself or the family. So yes we are left to rely on the overburdened education system. Every time you hope that IDEA is on your side and you have found a compassionate person, something throws a kink in the plan. Trying to be your own coordinator of services is like juggling five jobs with no time off or assistance. I am still amazed at how saying ABA sends everyone running as if I’d yelled fire. I’ve never asked for them to participate in my son’s home program, just acknowledge the targets we have him working on for attempted generalization in the school environment. I know I am asking for the moon on that one. I waste time trying to find small amounts of compensation from agencies unable to understand our dilemma. We drive unreasonable distances because we live in an area where there just aren’t professionals to help. I find that time is not on our side. I grow anxious as I see birthdays pass, markers of joyful growth for others, but for us reminders of how little we were able to help our child this year. I still choose to see the positive and celebrate the little steps. I can see the changes – even though they are small. I am grateful for the support of family who give all that they can and celebrate with us. I appreciate the friends who know how hard it is and smile when we make it through an event as a family, without a meltdown. I look forward to the future, hoping that choices get easier as change comes.

I try to stay focused on the

I try to stay focused on the positive.

Having a source of faith and spiritual guidance is key too. It keeps me from getting drowned by details when I know what the big picture is.


You said it all! We've had to bring in a lawyer when we found out the school principal was lieing when telling us our son had a one-on-one aide as was stated in his IEP. We found out through the grapevine that our son left the school building but was luckily found right away. Yet, the school denied our FREE services of having the teachers trained in ABA, which is how our son learns best. I am a teacher myself and cannot fathon how a school could say no to free training!
In any event, keep the faith and stay strong!!! You may feel alone in this battle but there are many of us who know exactly what you're going through. This site will be a place for us to gather strength from each other.