''Keep me away from the wisdom which does not cry, the philosophy which does not laugh and the greatness which does not bow before children.'' Khalil Gibran
My husband and I called together our service coordinator, our therapists and their supervisors the other night to request more service hours for Ava, as recommended by her developmental pediatrician. We are determind to get Ava what she needs to overcome this disorder.
"How did it go?", you ask?
I have a recurring nightmare that I am on stage and I have no idea what the lines are - and it is all a big joke on me. In my nightmare I have rehearsed and worked so hard, but it is all in vain. That sums up the meeting. It seems that
everyone talked to one another, prepared answers and decided exactly what they were going to give us BEFORE we asked. All of them were in on it - even the ones who said they would support our wishes and make sure Ava gets what she truly needs.
I learned a valuable lesson: "NEVER TELL A THERAPIST ANYTHING". The bottom line is, they are interested in protecting their jobs. I had told some therapists some things in confidence which were apparently relayed to their supervisor. All of them were privvy to what we were asking for and all of them were prepared to deny us. A therapist brought up the fact that Ava was on an anti-depressant for her sleep disorder. I did NOT want this to be public knowledge.
We hired an advocate to help us get Ava the service hours she so desperately needs. I get too emotional at meetings because it is my daughter. I cannot handle it when people tell me they "will not help her". I shut down. I become inarticulate. I cannot express myself. So I hired an advocate, who came HIGHLY recommended. She was a miserable failure.
The advocate was USELESS. She introduced herself as "having to leave by 5:45pm because (she) had to cancel clients to be here and she needs to get back to the office." I was paying her BY THE HOUR and she did agree to come to the meeting. She was more concerned with showing interesting iPhone apps to the therapists than making sure Ava got additional hours of speech and occupational therapy. She ate her dinner at the table, and virtually ignored the bullying I received. She bascially got us NOTHING we could not have gotten ourselves. She did not go to bat for Ava. She did not defend me against untrue and ridiculous claims that "less hours are better for an autistc child".
My service coordinator started out by making a statement that Ava's doctor goes on the Lovaas model of behavioral intervention, which is "old" and the state of NJ goes on the "Denver model" which is new and has proven to be a great success with only 15 hours of engagement and 10 hours of family engagement. My doctor's recommendations were disregarded. They even questioned her diagnosis of Ava. And NO ONE at the table was an M.D.
And what hurt the most was that therapists who told me that Ava needed more hours of certain therapies did a complete 180. I questioned them, "do you think Ava needs this service?" and they all said "no". I wanted to kick them all out of my house and not see them ever again. I wanted NONE of them near my daughter. But I sat there, visibly upset and shaken, and just nodded in agreement.
The only person who stood up for me, and Ava, was my social worker, who could barely get a word in. She is amazing and always has been.
So my goal was to increase ABA hours, get speech and OT services and some outside services in a sensory gym. Ava got no increase in ABA hours, 2 speech sessions and 1 additional OT session in the home.
If Ava does not make improvements in 30 days, I am calling another meeting. And I am hiring a real lawyer. This experience has made me sick to my stomach. Why won't they help my child? She is getting worse, not better. She is becoming more confused and more un-nerved by her environment. She has not been consistently verbalizing. And no one seems to care.
A parent IS the best advocate. A parent IS the only advocate. It is a shame that the people who are providing children with services do not want to help these children. They want to put a band-aid on these kids until the children are handed over to the school systems at age 3.
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Comments (8)
I am so sorry that you have had such a bad experience with the people who are supposed to be trying to help your child. I agree, a parent is the best advocate.
I am at college to become an Art Therapist, and your post has really inspired me. I will remember your words when I graduate, and I will strive to change how therapists handle these situations.
I really want to be an advocate for change, and I hope that you find the help you so desperately need. Good luck, and good for you, striving to make Ava's life better.
OH! So upsetting! If these people do not care about the quality of other lives, then why did they sign up to work with human lives?! I so hope that by the time I'm a speech therapist, those like this are pushed back by the ones who actually care. I definitely use stories like this as inspiration to do the best work possible to improve each life I come across.
I am SO sorry you had such a horrible experience! I think people forget that children are their parent's hearts walking around in the world. What you are describing is completely unacceptable and a very real problem in our healthcare services for these children!
I am a behavior therapist and the families I work with are my WORLD! Working with "my" babies is often the only reason I get out of bed in the mornings! Every small accomplishment is such a wonderful blessing that it makes the rest of my life seem very dull in comparison! I have indeed run into collegues who are more concerned with a paycheck than with the children and families they work with; but I assure you this is not always the case!
I truly believe if you keep fighting for your daughter (which it is obvious you will), then you will be led to the people who really care and will help! My boss, for all her flaws, loves each and every one of our children like they are her own. We have meetings every month, and our main order of business is making sure that our children are being properly cared for, and we are helping the families as much as we possibly can.
I think it is bullsh*t how you were treated, and I know if I were in your position I would be every bit as disheartened! But please...know that there are people out there who care deeply...and will fight for your child!!
Keep fighting the good fight...your daughter is lucky to have you!
This is terrible and it sounds downright traumatizing! I cannot believe that woman you hired just acted like she was some high schooler in study hall! Honestly, chatting with the therapists and showing them cool iPhone apps? Agreeing to be there, then the first thing she does is talk about how much of an inconvenience it is to be there and for her other clients for her to be there and how she can't stay long? Eating her dinner at the table, just more or less ignoring everything that was going on and not helping at all? I wouldn't have even PAID her. She didn't do anything, she basically just came and hung out for a while, played around, ate, and left. That's not what you paid her for. How did a woman like that come highly recommended? That's strange. Either way, she was definitely off her game THAT day. I'm glad that you at least had your social worker there who would try to help you out, but it sucks that she couldn't get a word in. :( I think your idea of hiring a lawyer is a good idea. Its too bad that you can't also have your daughter's doctor there, as well, next time. I hope that your daughter is able to get the help that she needs. This sort of behavior by these people is terrible and atrocious. I don't even know what to say about those therapists, whatever happened to confidentiality? They should have to warn you if anything you tell them could end up being repeated without your permission. I still think something illegal had to transpire with that. I don't care if they technically work for those other people, you are still a client/patient of theirs or your daughter is and they are supposed to keep what you say confidentially unless you give permission otherwise.
I hope that your daughter gets the help that she needs, but I'm sure with a lawyer as well as your social worker there next time they will definitely HAVE to listen. And, I agree with you. I wouldn't cooperate with those therapists anymore. What a crock, the way they treated you and your daughter. I'm not one for conspiracy theories, but this was definitely a conspiracy against you (and probably all the other mothers and fathers who want to get their kids more hours).
How in the world did that woman come highly recommended? And how did any of these morons manage to get and keep their jobs?? That's very upsetting. I'm sure that if any of them ever found themselves in your shoes they'd be singing a much different tune.
I hope you find someone that can help you. A lawyer sounds like a terrific first step. Good luck and best wishes to you and Ava.
best of luck
I feel for you. I worked directly with autistic children for five years, and to be honest, when a child, or children, began to flourish, that is when the book-learned, status quo comes in and holds both the teacher and the child back. You are fighting against a system that many before you have fought with and many will after you, and this battle is two-fold: the politics of special education and the bureaucratic mind. The bottom reality, is that no one is going to care as deeply about your child's progress as you do, and there will always be conflict in that for the parent. Once you find a unique teacher and advocate for your child who actually does go the extra mile, you must come to terms that this person may not be with you in the long run, often because success equals lesser funding and a gifted, honest teacher or advocate will either become fed up and leave the system, or become transferred to another system. All things are temporary and shifting in the system, but it always remains the status quo of the educational bureaucracy and federal funding is the bottom line, whether for the prodigy or the exceedingly challenged. What we all are, each of us, are spirits trapped in a physical body and to see each person uniquely is not something everyone is inclined to do, or, in truth, even capable of, which is terribly tragic when you think about it.
I pray you and your beautiful Ava well. You will have to be very strong as you fight for her right to flourish. It will not be easy, and that is the honest truth and with federal funding to states and districts becoming less each year, gather all the skills and all the tools you can now to help your child as you journey together through this lifetime. Some states, like Minnesota, have high funding for special education needs, but even that is getting cut back inch by inch.
Blessings~