Friday, September 12, 2014

Being the Advocate

Recently I had the unfortunate experience of clashing with William's place of therapy. Things were not working out. Despite getting along with therapists and them working well with my son, there were challenges and I was no longer willing to deal with them. We are now switching to a new place.

The original issue was the commute. The 45-minute drive was frustrating in the San Antonio traffic anyway, but then having to drive home during rush hour was making me angry. And an angry mom is not a pleasant mom. I hated being grumpy at the kids and they weren't too thrilled being cooped up in a kind of hot car sitting in traffic after going to school all day and then sitting in therapy. BUT if that's what we had to do to get my son his services I was prepared to do it... 4 days a week.

Although I could cope the commute, I was not happy with the scheduling. William wasn't on the schedule. They didn't have enough people. They didn't have openings for after school appointments. And since we were new, William got shafted. He had to go 2 months without therapies during our move. Then he gets only 2 weeks of PARTIAL services and then school starts and he gets relegated to ONE 30-minute session of speech. He is supposed to get TWO 30-minute speech sessions, ONE 60-minute occupational therapy session, and ONE 60-minute physical therapy session.

See the discrepancies??

He did end up with both of his speech sessions, but I had to fight for them.

The breaking factor was when we ended up being cancelled on not once but TWICE without being informed. So we drove all the way out there, in the traffic, and waited in the office after "checking in" only to be told 15 minutes later that we didn't have an appointment that day.

I was pretty pissed.

What we had worked out in scheduling the week before was basically thrown out the window.

By chance, when the crazy was going on, our case manager called me to check and see how things were going. She opened a can of worms on that phone call and I just let it all out! She apologized profusely and asked why I hadn't informed her. I said it was because we had supposedly worked it out but apparently not.

She asked what I wanted to do and I just felt so defeated. I told her I wanted to talk with the therapy place again to see if we could work it out but if not, we needed new referrals to go somewhere else.

Readers, you have no idea how difficult it was for me to say that out loud. I'm not a "jump around" person, I will stick it out to make it work. The term "scrappy" comes to mind. I try to be nice to everybody. I don't want to hurt feelings or make others feel bad. These people at therapy are theoretically professionals who should know what they're doing and I want to trust that it can be fixed.

It was in those frustrating days I had to realize that being ASSERTIVE is not being RUDE. There is a difference.

I am the advocator for my son. He can't get the help he needs without me pushing for it. I refuse to stand by and have my kid suffer for the lack of competence on another party's behalf. If I don't do it nobody else will.

When I showed up at therapy the next day, the front office could tell I was not happy with them. I tried to be polite, but I did tell them we were done. We would continue with the miniscule therapies William was receiving until the new referrals came in, but at that point, we'd be moving on.

The case manager had given me the names and numbers of other therapy places for me to call to find out if they had availabilities. I called all of them and they either had no availability or were also a very long commute. I was at my wits end. I was mad, and sad, and just wanted to scream and throw things. Why the hell did we agree to take a position at Lackland if we could have gotten this same crap treatment at Kirtland where we would have already had friends and a church and a support system in place to help me deal with all of this?!

Later I got a call back that one of the places nearby (only 25 minutes away) had given me incorrect information and they could accept William for all his services. Huge sigh of relief.

It was short lived.

The new referrals came in and we could no longer go to our current place of therapy. And our new therapy can't fit William into the schedule for evaluations for a couple of weeks... and I'm not even sure when he can actually start regular therapies because they also have limited to no appointments after school. Since Will receives services in-school as well, it kind of defeats the purpose if we take him out for several hours a couple times a week.

It's all a mess.

Then I view that maybe this is a nice reprieve. Will gets fairly intensive services and the little guy is only 6 years old. He's transitioning to full-time school days. A new city. A new school. A new teacher. And it's very HOT here. He really is having to take on a lot. Perhaps this lag in therapies can be a good thing for him to shift into all these changes.

I'm trying to look on the bright side but honestly, I'm not happy about any of this. I feel like a failure. What if I made the wrong choice? I know I didn't make it alone, Ryan was informed with everything going on and he was also in favor of finding a new place. It's wearisome having to be in the trenches fighting for William all the time. I would do it anyway, but I just wish things would line up more easily... why does it have to be so hard?!

1 comment:

  1. You are not a failure. You are an awesome Mom and you are doing exactly what great Moms do - you are fighting for your child to get what is best for him; you are sticking up for him and giving him a voice when he can't give his own (this is also a Biblical concept). William is so blessed, lucky and fortunate to have you as his Mom. There are Moms out there who don't fight at all for their kids when their kids need therapy, and then the child suffers. You are doing all that you can, and you are doing the best that you can.

    I am so sorry that it has been so awful for you. I so wish that I was there to help you, to listen to you vent in person, to take you out for a nice treat and a breather after the chaos of a fallout.

    I'm really glad that you are viewing the few weeks between therapy places as a reprieve. William has had a lot of change in his life recently, as you pointed out, and going to school all day does take some adjustment. And it is very hot - energy sapping hot - in San Antonio. Perhaps it is a blessing in disguise, for William, and for you.

    I don't know why things have to be so hard, I only know that they are hard, no matter where you are or what you're going through. Just keep doing what you're doing, because you're doing a great job. :) *hugs*