As a parent of an autistic child, with severe anger issues and prone to meltdowns, getting help and a break from this type of behavior is extremely helpful. From 2006-2012, I had Christian enrolled in “kids club” a local organization that provides an after-school program for autistic kids that puts emphasis on improving social behaviors, interacting with peers and learning proper social behaviors and life skills in various public settings (local stores, the mall, library, etc.).
Christian enjoyed this program and he really loved the field trips to the YMCA pool and the summer field trips to the Codorus State Park pool. Christian had his good days and bad days there, like all the other children. However, Christian’s temper tantrums were more challenging than the other children, but this place has trained staff, trained specifically to deal with autistic children to help him through these tantrums and try to teach him how to appropriately express himself when he is frustrated or not happy.
In February of 2012 I was told by his group leader that had had a bad tantrum and she also noted that this was the first one he has had in 6 months, which I thought was very good. So she asked me for suggestions on how they can help him when he is having a meltdown. I emailed her with a suggestion of taking him away from the group and letting him watch his portable DVD player, for about 10 minutes and using it as a reward. Therefore, if he acts up, redirect to the DVD player – which is portable, so he wouldn’t have to be taken to another part of the building, he could just be set apart from the group. I never received a response to this email – so I just went ahead and dropped the DVD player off with the group leader. Months go by, never hear from his group leader, no status on his progress, nothing – until May 30th. On May 30th, the group leader calls me and says, “I’m sorry Kim, but he had another incident last night.” I said, “Well today is his last day for the year, he will be off 2 weeks then he will start the summer program with you, so he will probably be fine.” She continues, “No, I’m sorry you need to get a meds (medicine check) check and YOU need to get his aggression under control before we can let him back.” I said, “Are you discharging us now? You are doing this to us now? It is May 30th! I only had him scheduled for Kids Club, he can’t sit at home all summer. What are we supposed to do?“ She continues, “Well you can speak with my supervisor if you would like.” Her attitude was completely as if she enjoyed telling me this and she knew that I had nothing scheduled for him and didn’t care. See, if my child does not have anything to do in the summer, he like normal kids and kids bored, however, unlike normal kids, my child gets irritable and the more irritable he gets the more severe temper tantrums and meltdowns occur.
They did this to us before in the summer of 2010, on the very first day of summer, I told the program director, give him sometime to adjust, and the will be fine. Nope. First day, after one hour, they called me in and said I had to get him, they handed me a letter to sign saying that he could only attend for 2 hours Mon-Thursday all summer – therefore he could not participate in any field trips or activities. What was the point? I said, never mind, we will be back in the fall. Program director called me later, and I said, “you got want you wanted, you don’t have to deal with him for the rest of the summer.” “Oh no, Mrs. Goff, we love Christian, we really want him here.“ Are you serious? How stupid do I look to you? That summer was such a horrible summer for us – we had no where to send him and he ended up having 7 hour tantrums at least once a week – it was horrible – thanks to kids club. I ended up taking him to Hanover Hospital multiple times that summer because he was so out of control and I had nobody to help me. Without structure and routine, Christian cannot take being home all day. This is what makes me so angry – they are supposed to help us and they made our lives 20 times worse, but hey it’s not them who has the problem it’s me. I am the one with the problem, the attitude, the temper. They do this to people and get away with it and it is WRONG!
So, there we were right at the beginning of the summer of 2012 with no activity or program scheduled for my son to participate in. We didn’t sign up for Extended Summer School (summer school at his current school) (ESY) in March, because this “kids club” had approved him for their summer scheduled and now they decided to wait until the very last minute to kick him out and leave us high and dry. I was furious.
Fortunately, my case worker at the time, was able to get me in contact with the Spring Grove Recreational Camp and we were able to get Christian signed up with their program on the condition that his TSS attend with him. In addition, I contact Christian’s teacher and asked if there was any way we could get into ESY at the last minute. Fortunately, we were able to get him into both programs.
In June, I went to the doctors and had Christian’s “meds” checked, everything was fine, throughout June and during his ESY program in July, Christian’s aggression had gone down, it was documented by the school staff, by his TSS, by myself in the home and his case worker also witnessed the decrease in his aggression and improvement in his behavior. Therefore, the caseworker, at the end of July, called kids club to ask that Christian be let back in, since we had met and have documentation, that we me their requirements for him to come back. The case worker called, ask the group leader when he could come back and she stated, “No. We have a good thing going here, we don’t want to mess it up.”
RANT WARNING: ARE YOU FREAKING SERIOUS?? Really? Your organization cheats my son out of much needed services, you tell us that he needs a break, he can come back when he is better, we do that and you still say no? Okay, so by this time I am furious – so I emailed the Executive Director of this organization and she suggest we meet. Well we meet, she makes note of everything I complained about and I asked her to contact me in a week to please give me an update on the status of her investigation on this matter.
A week goes by, I don’t hear anything, so I emailed her and asked for an update – she wrote back and stated that she did not find any fault with her staff or how anything was handled and suggested that Christian just continue with the Spring Grove Rec since he was doing well there. She also stated that there was no reason for me to ever contact her again. Really? How unprofessional are you? Again, I was furious. Services are denied to my son, in an inappropriate and unprofessional manner, with no justified reasons, except they simply don’t want him there and it’s okay. It is NOT OKAY!
The group leader called me and said she would like for me to come in and discuss this and I agreed and stated that I have some questions. Now when I was asked to meet her, I was under the impression and assumption that I was meeting with only her. When I got there, I met her at the door thinking we were going back in her office, and she stated that we would be meeting upstairs in the conference room. I thought okay, that’s fine. Well, to my surprise, there were about 10 other people in this meeting. This is what is called an intimidation tactic, they try to intimidate you with all of these other staff members there, staring you down and trying to tell you that you are the one with the problem. Well, here is the problem with that tactic, IT DOESN’T WORK ON ME! Therefore, I didn’t say anything about that, I was in a good mood and didn’t let that shake me so I started speaking: I told them that I just wanted to confirm some facts about the situation with Christian being discharged and that I am not here to get him back in the program because “I do not want Christian to go somewhere where he is not wanted.” No one said anything when I made this statement. It was very clear to me that my assumptions were correct and they simply do not want him there. I asked the group leader to confirm what she stated to me on the phone, about getting a “meds” check and that “I need to get his aggression under control” – and also please note, I am his mother, not a TSS, or trained therapist like they are. She looked as though she was extremely angry and said, “yes”. No one else in the room said anything. I said, “I sent you emails with resolutions to help Christian and you ignored my emails – yes?” She said nothing, nor did anyone else. I asked her to confirm that when the case worker called to ask for Christian to come back that she stated “no, we have a good thing going here and don’t want to mess it up.” She denies the second part of that statement, but confirmed that even though we met her requirements, and we had appropriate documentation to support those met requirements, she still denied him services. She said, “yes”.
The male character in this story who works there, and is another person that is in charge of this group, someone, in my opinion, has no backbone, and someone who I have sent emails to before complaining about services, and who always wrote back saying that he check into it and stated everything is fine (he is someone who doesn’t like confrontations and just goes by whatever his staff says and does not listen to complaints at all, multiple parents have also shared similar stories with me about him), decides to say, “Well, we just don’t think this program is a good fit for Christian.” I said, “really? isn’t Christian the type that your program was created for?” “Well, we just think he would be better off somewhere else.” “Where else? There is no other program like this in Hanover?” Again, no response. I asked them for the paperwork they have on their discharging process, what their requirements are for discharging a child. They looked at me like I had three heads. They said they don’t have that because it is on an individual basis. Okay, let me get this straight, so you discharge children, who are approved by psychologists and insurance agencies to participate in this program and you can discharge them based on no official protocol or regulations? No one said nothing.
They never called to see if Christian improved and never invited him back into the program again. This behavior absolutely makes me sick and I don’t understand why organizations are allowed to get away with this behavior. I have been told about countless stories of how they have discharged many other kids they don’t want to handle anymore and how awful and disrespectful they are to many of the parents of these children. See, when this club first opened it wasn’t making any money – now that they have become this “cash cow” – now they can pick and choose who they want to deal with. So, of course they are going to deal with the more “easier” kids. Here is some more proof they do this, in March I met with another mother whose daughter used to go there. Now, her daughter was much more easier to handle then my son. In March, we were waiting for the approval for Christian to attend kids club and at that time we noticed it was taking much longer than the previous year. Now at this meeting, the mother stated, that kids club had called her to see if her daughter wants to attend the summer program. Okay, let’s think about this, I am waiting for the approval of my son for the summer program, and at this time he IS a current client of kids club, so they go out of their way to contact someone else who ISN’T a client to invite them to come for the summer.
Now the reason they said the approval for Christian would take long, was because of so many kids trying to get in this summer and hours for children being cut back by the insurance agencies. Really? If you don’t have enough spots and hours for the current kids why are you going out and seeking other children who are current clients? You really have to start asking these types of questions, however, when you do you are the one that labeled as the “problem parent”. See when you start to questions things, people in the mental health industry don’t like that.
See, organizations, such as these, think that we parents of special needs kids are stupid and that we can easily be manipulated because we don’t know any better. Unfortunately, this story just get worse. I went on to complain to the agency that funds kids club with his CCBH – wrote my letter, talked to someone, they said they would take action, look into, blah, blah blah. I also asked them to get the documentation from them on their discharging procedures. Well they looked into, did all the paperwork, just to come back and tell me that my complaints are legitimate and they are sorry this happened, but because I am the ONLY one that complained, nothing can be done. So my son’s injustice and ill treatment is allowed because we are the only ones it happened to. Wow. Unbelievable. This is when you learn that no one cares about your child, it is all about money.
Really? My child was wrongly “kicked out” of a service he desperately needs, because those people at kids club do not like my child and do not want to help him. I am not telling you this story because I want him back in there or that they pissed me off. I am telling you this because I think the public needs to be made aware of these wrongdoings. People are contributing money to this organization thinking that it is a great organization that is all about helping kids in need as well as their parents – well from my point of view THIS IS NOT TRUE! In addition, I know many other parents who would agree with me.
Whoever reads this and contributes to this organization you really need to call kids club and ask them what type of organization you are really contributing to. Do you want to contribute money to an organization that throws kids in need to the curb? I bet that is not the type of behavior that you intended to contribute towards.
See, this is the only type of organization that exists in Hanover for parents of children like mine, for some this organization offers the only break that they can get after school and in the summer. Therefore, some of these parents are “enslaved” to this organization and have to put up with rude behavior and ill treatment because they have no where else to send their child. This organization is quite aware of that and that is why they get away with this. What they did to my child and how they treated me is deplorable and disgusting.
I wish another organization would come into Hanover an offer similar services – see when they start losing money, then they will decide to change their tune and improve things. Until then, if the money is good and they have more children coming in than they can accept, they will keep ONLY accepting the “easy kids”.
Let me also make something else clear about me. When something is wrong, I speak the truth. My son was a client of this organization and NO ONE is going to tell me that I cannot speak out about my experiences. I CANNOT be sued for speaking my opinion or how I felt about their services. I did not work for them, they were supposed to work for my son! Verbal threats, legal threats have no impact on me, not does a meeting with a bunch of people giving me dirty looks. Doesn’t work. Tip: If you want to intimidate a target you must research what actually intimidates that target. Organizations/State Agencies, legal representatives, politicians, have no impact on me. I am my own person, and I will not be told that I have to “be quiet” and “not rock the boat”. My intention is not to “rock the boat”, it is to tip the whole thing over so that this doesn’t happen to another child!
This organization should be ashamed of themselves for the injustices that they commit against the children and the parents that they are supposed to be helping.
(Please report any spelling or grammar errors to Kim- thank you!)