What is the cost?

Where can I buy a tree? You know-- the kind that money grows on? Life is just getting heavier and heavier on the psyche. It just keeps getting harder and harder to breathe. I just can’t figure out an alternative that I can live with.

I suppose most of my disappointment is because I grew up living hand to mouth. I went to college to better my situation. After college we both landed decent jobs and I swore I would never end up living that way again. And we wouldn’t be--if it weren’t for all of the special services that we have to pay for out of our own pockets. No thanks to the government. No thanks to insurance. No thanks to the many respite facilities where they qualify you on your income and don’t adjust it for the out of pocket costs of the multitude of therapies.

We live in the red. Thank God for credit cards! But I hate being one of those people…you know the indulgent kind that lives beyond their means. Perhaps my biggest resentment is that I am one of “those people” yet I don’t get to feel the high from having the newest gadget or regular pampering sessions. It just isn’t fair that I have all the anxiety that comes with debt but none of the highs to help medicate that unease.

Yes, I don’t work outside the home. Of course, working is an option. After all, I do have a master’s degree—someone out there has to be willing to pay me money. But who would take JP to OT on Monday, speech therapy on Tuesday, his 1 on 1 on Wednesday, his speech playgroup on Thursday or his 1 on 1 on Friday? Who would devise our home program, supervise and implement it? Other families are paying $2000 a month for a consultant to create their home program. Where is my $2000 for creating JP's curriculum? Wait a minute, where in the hell are those families getting their $2000!

The school vans could take him to day care and back as long as we find care within our school district. How crazy is that…not only would we have to find child care (that we trusted) but they would have to be in this one quadrant of the metro area. Even if I could find someone willing to pay me, they would have to be flexible in allowing me time off for doctor visits and all the other incidentals.

I know when Autism enters a family sometimes the mom has to quit work. I have also seen where mom has to go back to work. Neither option seems viable. Even if we could have gotten JP enrolled in the program at the local Med Center I wouldn’t have made enough to cover the $56,000 a year tuition. Not to mention that program ran from 10 to 3. Those are not any office hours I would have been able to maintain! Then we would still have all the other therapy costs. We would still have childcare costs for T.

I've heard that 80% of disability families end in divorce. I also heard that that rate is 90% for Autism families. That isn't too hard to believe considering most breaking points for couples stem from finances. I can't imagine how a family could survive if both parents didn't feel the same way about how far to pursue therapies for the child. Fortunately I have the world's greatest husband who sees the growth in our son and is willing to keep sacrificing. I just hope that we stay together on this...

I just can't figure out how this works. How are we supposed to survive? Are we not supposed to do everything humanly possible to help our child? These services have brought words to my son. They have brought eye contact and smiles. They have taught him to appreciate other people and they have made him feel comfortable in his own body. These therapies are fixing the imbalances that society and nature created. How can I stop? They are giving him a future. How can I not mortgage ours to give that to him?