Image by o5com via Flickr
When Gina and her husband were first married, and living in their first home (also know as “The Money Pit”), they talked about having children. “OK Gene, do you want to start a family or to destroy the family of carpenter ants eating our walls? What’s it gonna be?”
The fact was, they simply didn’t think they had enough money to have a child, though people convinced them otherwise.
“Kids aren’t that expensive,” they said.
Of course, the people who told them that didn’t have special children.
It’s no surprise that one of the biggest challenges facing families of special needs children are the costs involved with getting the care and support their special children need. (See article below.) Patty reminded Gina of this recently when she proudly displayed her check register. “Look Gene, my last ten transactions are co-pays to therapists and doctors.”
And Patty’s one of the fortunate ones, as her daughter does not have learning issues. Gina, however, who has two daughters with learning disabilities, has even more expenses, including therapists (who don’t take insurance), advocates, tutors, lawyers, medications, social groups, wine boxes, etc.
It’s really changed her view on her financial dreams. “Gina Gallagher you’ve just won one million dollars, what are you going to now?”
“Well, Ed, I’m going to buy a pharmacy.”
Don’t get us wrong; Gina has been fortunate, too. Her children function at a high enough level that she’s been able to work in her home as a professional freelance writer. But that’s involved Gina making sacrifices and taking work whenever and wherever she can get it.
“Mommy, do you have to take your laptop on Dumbo?”
And even with that, it’s still hard to manage the soaring costs. “Mike, I figured it out. If we play our cards right and our expenses for the girls don’t rise too much, we can retire at the young age of 115.”
The expenses also pretty much rule out fancy vacations that many of their friends are able to take.
“Gene, do you and Mike want to cruise to the islands with us on school vacation?”
“No thanks. We’re going to go to our own island — the one in the center of our kitchen.”
Though investment advisors might advise us against spending all our money on therapists, etc., we think the dividend payout is pretty good if we can make our children’s lives easier. Heck, we may even move them toward independence, and live the life we’ve dreamed of.
“Hey Gene, now that the kids are gone, what do you say you and cruise to Home Depot and get those mouse traps you’ve been wanting?”
“Oh Michael, you remembered.”
Imperfect Question
Are the soaring costs of advocating for your special child causing your family great stress? Tell us about. Also, read the article below about an innovate scholarship program in St. Louis designed to help special parents. Sounds like a great idea to us.
This is exactly what he Ball & Chain Braceletto was designed for! Families need help. I’m so happy you found this!
p.s. Your Blogs are Blogschome! <3
This is awesome! How do we carry this over to the rest of the nation? There is just not enough help out there!
Thank you for the blog post! The trouble is that many parents make too much to qualify for assistance on paper (yours truly) but can’t make enough to pay the bills.
I just went without oil for a week because I didn’t have the $400 to do it. On top of that, my son’s theraputic mentor decided that our house was contributing to my son’s gi condition so now DCF is involved.
My son’s psychologist laughed and said – “they’ll give you a Chinese menu of things 43/47 you’re already doing. SO?”
Being the neglectful parent that I am, i drove DS from Chicopee to Lexington MA (180 RT) for 4 years because the district did not feel he needed private school and I invoked stay put. I also used unpaid FMLA to be with him during his 17 hospitalizations in 27 months which ultimately led to a bankruptcy filing to protect my house.
How about a bail out or a tax credit for those of us drowing in debt to educate and ensure our special needs kids have what they need to grow into self sufficient adults?
Would I do it all again – you bet your ass! I have the most wonderful son who will go on to do great things. His dream?
To be an elementary sped teacher.
Thank you all. I so agree. I know so many parents who cannot afford attorneys/advocates when they desperately need them. I attend to talk to my rep about this tax break idea.
@Schmoop. I think you’re pretty Schmooptastic.
Funny, it never occurred to me that these are really non-negotiable expenses, thanks.
Here in New England, a really great tutor (the kind who actually connects with your kid, who sends that kid out the door grinning with his 2-page essay under his arm) can be up to $150/hour. Forget trying to find a psychopharm or therapist who sees kids AND takes insurance; there are maybe 5 of them in the Boston metro area, and they’re all booked until 2025. So that’s $125 for a half-hour consult for meds. Then there are the co-pays for the meds, the time taken off work to meet with the school “team,” on and on. Oh, and because our kids often don’t have grades that get them any scholarship money to college, we pay full freight, to a private, small-ish school where there will be help, and that tab is around $50K/year. Plus the bills for the out-of-state therapist who also doesn’t take insurance. We can never retire.
We wouldn’t do it any differently–the main goal is obviously to launch our kid out of the nest as happy, self-sufficient people, but it would be amazing to have some help. The question is: how do we separate out the families who really need all the services from the neurotic “worried well”? Maybe that’s not a real argument, but those who would foot the bill (most likely those who also don’t want any kind of health care reform) will say we’re all over-diagnosed and over-medicating.
vacation is almost a bad word in our house! we just call it ‘breaktime’…a break from appointments, meetings, school, work, tutors, more appointments….! it would be nice to have some kind of help/break. i’ve had to borrow from my 401k twice just to keep from totally drowning in bills! (we still have to do the dead man’s float quite a bit!!) my state just increased our income tax, (which equals about half a year of just the psychiatrist’s bills for us) but i’m thinking maybe the state should give me a break for keeping my sons out of the system. i think the state would come out way ahead on that one!! the home depot scene is totally my husband and me too! except it would be at meijer, since that’s where we usually end up on our scarce dates! we’ll finally get to ride those electric scooters!!
Oh how I can relate to all these posts! My husband received a 50% paycut last year and most of my freelance work has dried up. We cannot sacrifice our kids’ meds and therapies in order to pay our mortgage so I feel like we’re often robbing Peter to pay Paul and we’re still sinking. We’re still making too much on paper to qualify for most aid although our kids finally qualified for Medicaid a few months ago with the caveat that we pay the state a monthly premium for coverage, However many doctors refuse to take new medicaid patients and our son needs to see a psychiatrist so that will come out of pocket 100%. I’m looking for a full time job but not many employers are willing to deal with an employee who has to take her children to doctor’s appointments at least once a week. I have one daughter with urinary reflux, another daughter with significant GI problems, and son with ADHD/mental health issues. Pass the wine please!
I feel what all of you have said. My husand and I finally agreed to apply for a therapy dog for our son last week. We have been putting it off for financial reasons and because we thought he was improving. When we were discussing it I told my husband we might as well face the fact that things aren’t going to be different in 18 months when we would probably get one. He said you mean they won’t be better financially? I said well yeah, but I was really thinking about our son. In the last year we have bought a lap top to provide assisitive tech, an Ipod touch for the same thing, and two programs to put on them. That isn’t even counting meds and doctors. My husband is also pouring money into a show pig breeding business, but that is because it is the one thing our son really excells at and might even provide him with a career. I told my husband-face it, all our extra money either goes to pigs or our son so we might as well just go for the dog too. I can handle it, but what I hate is my 16 year old will leave for college soon and I feel like he has been cheated out of so much. I try to make it up to him in other ways, but I know it isn’t easy. As a teacher I also see parents who have even less options than those of us on here do. First, so many of them also had problems with school and mental health and they never got help so they have no clue how to help their children. Then they don’t even have gas money to get to the doctor, much less money to pay a copay or for meds. Many of them really want what is best for their child, but they have no idea how to provide it. Schools are so strapped for money that a lot of times they don’t have the resources to help these families either. Very overwhelming problem!