Standing up for my self

[jane]

I was so conditionned by the last church to "not make discord" that I often allowed for abusive scenarios to occur from all angles without at least standing up and saying "no".


Today, I was able to do that and even though I am exhausted, feeling like it may not effect change on the other party's end- I feel glad that I stood up for myself.


I went to the local Children's Hospital with my 5 year old that has special needs. Now, there is a history behind this department and I with poor service. Not the whole hospital, just the audiology and speech department. For example, last summer I called the receptionist to reschedule an appointment. She was harried, busy and was going to call me back. Well, the next I heard, I got a letter from my pediatrician. That department sent them a letter saying that I was a "no show, no call".... I was livid.

Well, fast forward to this morning. I had a speech evaluation scheduled for my son at 9 am.

Anyone with sensory issues can appreciate the stress of changing a child's normal routine of school on Wednesday-- then a drive of 1/2 hour to Hartford-- then the parking garage and all it's sounds-- then the construction going on outside the parking garage--

well, then we get in line to register and a fire alarm sounds. HEHEHEHEHEHEHE. That did it. my son gets to the speech therapest after the alarm is over and pees his pants. (oh, did I say this is a new speech therapest and Caleb handles changes with about zero tolerance)

It was only 15 minutes after the appointment was to start. When I first arrived the support staff lost my file and didn't know if I had an appointment. THey were yelling at each other, "well, I emailed her (referring to a doctor) and if she didn't get it that is her problem"......

So at 15 minutes late- NOT MY FAULT BUT THE FIRE ALARM- I am informed that we will have to return for this 2 1/2 hour eval on Monday. I tried talking her into changing her mind but the therapest wouldn't have it, She had an 11:00 appointment that she was worried about being late for....

SO, I started to leave. I stopped myself and asked to file a formal complaint.

1) fire alarms should not cause more harm than protection. In a hospital with children that have special needs we as parents should have for warning...they do at my hospital!

2) I was sent away for wet pants of a child with sensory integration disorder that was reacting to a fire alarm!

3) I am sick of the support staff's level of unprofessionalism.

Anyway, to cut this somewhat short- I had a meeting with some president of some department and was actually listened to. The head of this department called me with an apology.

We are still not staying here for treatment, I am DONE giving over $150 an hour of my money and insurance to this crap.

So, moral of story, It feels good to stand up for how you are treated. I am just starting to do things like this and feel like a baby deer learning how to walk.

jane

[InTheory]

Good for you Jane!

I work for a large telecom company (in customer service), and I understand every day how "service" has so drastically declined in our country and business.

Our voices are important, and often a complaint makes the people that are providing service remember that their customers are human too.

-Dan

[Willow]

Hey Jane... that's excellent! What great practice you had in that instance. May future conflicts prove to be less stressful and even more successful!

[Pinkie Pie]

So, moral of story, It feels good to stand up for how you are treated. I am just starting to do things like this and feel like a baby deer learning how to walk.

jane

I love it! Your experience inspired me in my efforts to "learn how to walk." Glad it turned out that your feelings were validated.

[SpinningHead]

Absolutely Back-Flipping Excitement for you!!!

Congratulations!!

You made a HUGE step in learning that you teach people how to treat you! It sounds like you handled an extremely frustrating and difficult situation with grace & dignity!

SO PROUD OF YOU!!!!

[Leslie]

Jane,
Good job! Sorry to hear it was so frustrating. When I read about the cost which I assume refers to the Sp/lang/Aud services, I thought I'd check to make sure you know that free services are available to kids (criteria vary by state) through the schools. This applies from birth to age 21. Even if it's a medically oriented problem. Forgive me if I'm telling you what you already know. I believe that even if the school is ill-equipped in that disorder, they are then responsible to help finance services outside of the schools. That's my understanding, having been a school SLP.
~L

[jane]

Leslie-

thanks. We get speech at school. The problem is the consistency of it. Last year in his IEP he was to get 5 sessions over extended summer school.

At the end of the 5th session, I met the SLP, who indicated that it was a waste of his time because he was "all over the place" apparently the OT consult forgot that he needed to do heavy work prior to speech.

So, a summer went by that wasted tax payer dollars and caleb's time.

Then school started. Well, it takes a few weeks for services to begin.:mad:

Then our SLP was the best. But she left this district two weeks ago and there is no one starting yet.:eek:

Yes, I know I am legally entitled to fight for the services, but I am finding a discrepancy for what is on the IEP and what is being done.

There are always good reasons and the speech instruction focuses on how it interferes with his education.

As a parent, I want to add private services to ensure that he is able to communicate outside of his educational experiences ;)

as well as get as much early intervention as I can as quickly as I can.

So, while he gets SL services in school, he gets OT there as well and now after a month of hell; a sensory diet is in place.

We also get private OT, Vision therapy, take him to gym in lieu of PT (for a more "normal experience"), and now to swimming for Priopreceptive feedback. We will also take him to speech as soon as we find a private one closer to home.

Next, we plan to take a month vacation where he can just be a 5 year old boy without any "services".

thankyou for your input, if you were closer, we'd hire you too.
:D


jane

[Theodora]

Continue to stand up for yourself (and your special son!) as you can. As the adoptive mother of a special-needs son of a different description (borderline this and that...will spare you the details for now!)...I well remember how FRUSTRATING/exhausting/SCARY it was to try to wend my/"our" way through various services. Somewhere along the way, you're also needing to deal with various levels of incompetent and/or overloaded people, who REALLY don't take kindly to the idea that they're not doing what they "should" be doing! Since you also have professional credentials, I would think that that should stand you in good stead as you continue to advocate for your son.

GOOD JOB, ((((Jane))))!!! Keep up the good work!!!

Love and prayers--

Theodora



Leslie-

thanks. We get speech at school. The problem is the consistency of it. Last year in his IEP he was to get 5 sessions over extended summer school.

At the end of the 5th session, I met the SLP, who indicated that it was a waste of his time because he was "all over the place" apparently the OT consult forgot that he needed to do heavy work prior to speech.

So, a summer went by that wasted tax payer dollars and caleb's time.

Then school started. Well, it takes a few weeks for services to begin.:mad:

Then our SLP was the best. But she left this district two weeks ago and there is no one starting yet.:eek:

Yes, I know I am legally entitled to fight for the services, but I am finding a discrepancy for what is on the IEP and what is being done.

There are always good reasons and the speech instruction focuses on how it interferes with his education.

As a parent, I want to add private services to ensure that he is able to communicate outside of his educational experiences ;)

as well as get as much early intervention as I can as quickly as I can.

So, while he gets SL services in school, he gets OT there as well and now after a month of hell; a sensory diet is in place.

We also get private OT, Vision therapy, take him to gym in lieu of PT (for a more "normal experience"), and now to swimming for Priopreceptive feedback. We will also take him to speech as soon as we find a private one closer to home.

Next, we plan to take a month vacation where he can just be a 5 year old boy without any "services".

thankyou for your input, if you were closer, we'd hire you too.
:D


jane

[Leslie]

WOW. It sounds like you are very busy doing what is best for your son! Are you exhausted?? I think that's wonderful that you are such an advocate for him. He is very fortunate to have you!

At least in some states school SLP can be more broad than the focus on communication in school. I sure hope the school hires someone soon. They should be getting a sub in; if no one applies or is qualified, they can usually hire a graduate student with a provisional license. And if there are discrepancies between the IEP and reality, there is due process under the law to fix that problem. Perhaps you could lean on the principal, though it sounds like you are VERY WELL on top of things.

Blessings to you and him and the whole family,
Leslie

[jane]

Yes, I am often exhausted. We hung ladder swings and monkey bars in his room and bought some spandax tunnels- this keeps him better leveled when things get way out of hand.

I think the biggest frustration that I have is getting the para that works with him to believe that he has a real medical condition. She is a para which means very little education requirments but she seems to have the biggest opinion that my son's problem is "his decisions to be fresh". While we don't advocate "fresh" behavior for what ever the cause, it frustrates me because we got him stable, functioning and doing extremely well. Her lack of following the sensory diet makes everyone's life miserable....

I know about due process, we are having another meeing this week. I am trying to work "with" the team first and build on strengths. I have been attending school as much as possible. I believe that trying to build a positive relationship with this para and everyone else may help Caleb more.

We have just contacted an attorney who is assigning us an advocate, which I ironically was when I first graduated college. The attorney said that she herself, an attorney, brings another attorney to her own child's PPT.

I will battle if I have to but I want what is best for Caleb. Sometimes an angry staff group is not the best thing for your child. He is in kindergarten, so for now we are patient. Academically he is in the top percent of his class. If things don't improve over the year, we will require outside testing, schooling or even homeschooling- what ever it takes to make sure that he has a successful academic childhood.

I rambled enough and nothing about spiritual abuse....but these things in his little life do keep me busy, on my toes and wide awake at nights...

thanks for asking,
jane

[Carmen]

Hi Jane,

Just trying to give you moral support. Go, Jane, Go! :) Sometimes we need our own cheerleaders, I think, to help keep us going.

I admire you for keeping up with all that is going on with your son. I know it isn't easy. My son has a bowel problem and my daughter is dyslexic, so I have my hands full too, literally sometimes. Ha! Ha! Also, I think that Hubby is/was dyslexic as well and has his own emotional baggage to carry around too because of that. That explains a few things and at least some of his behavior.

Just keep on! Yay, for standing up for yourself! If you won't do it, no one else will. :) :) :)