Getting People to take you seriously!

Okay I am writing to rant...I am SO very fustrated...

Went to the school district today to get Trey enrolled in Early Start Kindergarten...we are in the process of the IEP now, and this lady asked how old Trey was...Trey just turned 5 last wednesday, and we just got a 90% sure diagnosis of Duchenne's last Wednesday...so this is all new.

She asked me when his birthday was (September) then went off on me about the fact that Trey was 5 already (for 6 whole days) and not in school (just moved from Colorado where you can't start kindergarten unless birthday falls before July 1st anyways)...She took no time to ask about our situation, watch Trey move, even talk to Trey or ask why he wasn't in school yet (although we were planning on starting him in January), she just went off on me, making me feel like I was being a 'lazy mom'...

SO THEN in front of tons of people I had to tell her...look he has MD, we do have an IEP, and on and on and on. And then I had to 'describe' our situation, the disease, etc, right in front of Trey. They had no clue what this is, and little apathy...I had a breakdown right in the school in front of my son (who I don't think realized it, just said "Mommy Sad?"). I don't want him to be treated differently then anyone else, but this is ridiculous!

I know I need to be treaded on lightly right now being pregnant and just learning of this, but I SO didn't need this today! Beginning to think that this is something we will be dealing with forever from here on out...uggh!

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Comment by Cori on September 25, 2009 at 2:50pm
Candace,

I am so sorry that you are going through this as well...luckily once we got through the original school district everything moved quite fast and is great for our little Treyman, the final IEP meeting is this coming Monday and he starts school on Wednesday. I AM SO EXCITED FOR HIM!!! I too, like you LOVE his teachers, absolutely adore all of them and just know he is going to thrive there. Hang in there.

The best thing that I can tell you is I don't know if you are getting an IEP or just enrolling him into school, but the IEP process is on a timeline...they can't refuse you the paperwork, you fill it out and then within 15 days you will be contacted by school counselors, psycologists, speech language therapists, pe teachers, etc and then you will meet with them one on one and they will immediately set up a "plan" for your child and their individual needs. We wouldn't have gotten this far without them and you can completely skip over the middle men. RIGHT NOW YOU HAVE TO BE THE SQUEEKY WHEEL. I hate being that person, but now that all is said and done I am so happy for Trey and I never needed to be the squeeky wheel once I got the IEP rolling...I believe alot of it is because it has state timelines.

I am not having problems with the docs at this time, before the diagnosis I definitely did though. I kept saying something was 'different' and was told NUMEROUS times that he was just 'behind a little'. He wasn't going to be a 'star athlete' all that jazz. Finally I actually told them the test I wanted ran and sure enough they came back positive and unfortunately here we are...sigh. Once the blood results came back EVERYONE in the medical community we are at has been VERY proactive. To the point where we found out everything on August 21st and he has already met with the Pediatric Neurologist, Orthopedist, Psycologist, Genetist, PT and OT. And we have an appt. upcoming for Developmental Behavioral Peds soon. It has been to the point where I thought alot of it was unneccessary and moving way to fast. We are a Navy family so I know it is way different then what you are probably being offered, HOWEVER you may need to be the squeeky wheel here again. Tell the docs you know he needs PT and OT (there are state funded programs through the schools for non military), and you want to know WHEN and WHAT you have to do to get that set up for him. Until you get an answer be that pain in the butt. I know it sucks, but once it is set up you will be thankful. We have been told that we can go to the MDA clinic as well and have our insurance carry over to that, but like you we like our Ped Neurologist SO much that we have chosen to stay with her for the time being, especially since right now Trey doesn't seem to need much help.

So as scary as this is have you found out Boy or Girl...I am so hoping Girl for you. I am due on the 1st and thankfully she is a she =). Don't know what I would do if she was a he.

Be strong, let me know if you need anything, and be forceful. Really so many people 'don't understand' this disorder that it seems we are put off...I tried to be nice mild and meek. Doesn't work. Get in the habit of telling people what you want for your son, what you need, get educated (as I am sure you already are), but you be the advocate for your son. No one else will be that for you.

HUGS, Cori
Comment by Candace Miller on September 25, 2009 at 1:41am
SOUNDS LIKE WHAT I'M DEALING WITH!!!! The teacher at the school is very nice but the woman setting up starting my 4 year old in early childhood is not sending me the information and paperwork I need to get the process started. I have called and left countless messages and she tells me that I'm not the only one in the world with a sick child, etc, etc, etc. I am also 19 weeks pregnant and dealing with all this. We found out I was pregnant 3 weeks before they diagnosed my son with DMD. I am right with you on this almost step for step it seems. Having any issues with the doctors? I am having major issues with the clinics in my area and the doctors he has seen so far. Except for his primary care and the first neurologist we saw who isn't with the MD Clinic. We decided to stick with him because the experience with the MD Neurologist was infuriating. Feel free to leave me a message whenever you want because it sounds like we are going through a lot of the same things right now. We live right across the street from the school my son will start. He was devastated when he started walking across the street telling me he had to go to school too and I told him he couldn't go yet. Threw himself on the ground screaming "I want to go to school!!!" The teacher that would be teaching him in Early Childhood saw his breakdown and came across the street and had me bring him into her classroom to play for a little while (the school day was over and kids were going home so she was able to do that). I love that woman so much...I just hate the person that's supposed to be helping me to get him enrolled. The teacher has even taken in upon herself to get some of the paperwork just so I can get a head start on some of the forms we'll need to fill out once he's been set up to be evaluated. The problem is these other people aren't getting me the paperwork so I can start getting him set up to have the evaluations and get the information they need from the doctors, etc. Good luck and again if you need to vent feel free!!
Comment by marcie macek on September 16, 2009 at 9:08pm
SOUNDS TO ME LIKE THE WOMAN IS JUST COMPLETELY CLUELESS AND MOST LIKELY WILL BE IN SHOCK WHEN SHE REALIZES HOW CLUELESS SHE IS AND WAS. I AM GUESSING IT IS JUST IGNORANCE OF THE UNKNOWN.

mm
Comment by Wyatt's Mommy, Melissa on September 16, 2009 at 7:46pm
I would be so mad. It sounds like you would handled her alot better than I would have. Are you going to talk to someone about her. The school she be embarrsed to have an employee like that. There are agencies in each state (I don't know what it's called) where you can report this kind of behavior. A friend of mine's son had his arm broken at school and she reported it to this government body. That lady needs to be punished for what she did. I'm so sorry. That's the last thing you need.
Comment by Wyatt's Mommy, Melissa on September 16, 2009 at 7:42pm
Cori, I have so fought this fight(sort of). My 13 year old son was diagnosed with Asperger's Syndrome when he was 9 (in 2005). Like DMD no one (even the people that should) knows what Asperger's is. So I go on to explain that it's an Autistic disorder and I immediately get that look, "the pity look!" I spent years trying to help my son thorough the school system, with little luck. I actually took him out of school last year (when he started middle school) because I actually had the person who would be responsible for him during the day tell me, "we have a bullying problem at this school and your son will most likely be beat up!" I was in total shock. He's very high functioning and pretty intellegent so I immediately decided to home school.

Long story short, don't let the school push you around. You have to fight for Trey because no one loves him like you do. Ultimately, the school cares about one thing. "fixing everyone!" Trey doesn't need to be fixed, he needs a little extra help that's all. I'm will Jennifer, this school doesn't know what they are up against. They will be sorry that they crossed you.

My husband always says that the battles we fought with Anthony and there have been alot (medical care, school, OT, speech, etc) were our warm up for Wyatt. I agree. We learned alot having a special needs kid already, so with the support of my PPMD freinds, we WILL win the DMD fight.


Good Luck.
Melissa :)
Comment by Cori on September 16, 2009 at 12:29pm
Thank you all...I think the thing that is most fustrating is she had the nerve to not know anything about our situation, tell me that my 'son was fine', and ask everyone in the room if he looked like he had it...the nerve of this lady!!! Because he looks super adorable and doesn't appear outwardly sick and I don't treat him like he is any different then the other kids, those comments can be made... Still fuming =) LOL
Comment by Eileen DeLong on September 16, 2009 at 9:35am
So sorry to hear what you had to go through. Please can be so frustrating! Sound like this woman is just this way with everyone and should not be working with the public!
Big Hugs for you :)
Comment by Jennifer Shumsky on September 15, 2009 at 8:57pm
I can get a cheap flight out there and hit her for you :)
She obviously had never heard not to mess with a pregnant woman.....or her new PPMD friends! Hugs for a really crappy day that you can't even follow up with a good drink!
Comment by marcie macek on September 15, 2009 at 5:57pm
It is very sad that you had to deal with that situation. You should talk to her supieror and maybe they will educate her on proper compassion. Your situation brings me back many memories . I am sorry if i get on a rampage and barely make sense. It brings me to a point i can't describe. You are going to deal with an entire world of ignornace and people who are not so ingnorant and are understanding. You have to know, that it is their problem. Your child is the KING! KING OF THE WORLD! Your child will teach and educate many children, adults and many ingnorant people. He will make them BETTER HUMAN BEINGS! Your child will make the world better just because he is in their lives. I work with all types of mentally challanged individuals, as well as disabled people. My son is one of those special people and believe me i am very lucky to have him just the way he is, As a mother I have had years of what you have been throu today, i know your saddness. BUT!!! You will see as Trey grows and mingles into childrens lives how much he will show children and others the light. He will educate the ignorant and enrich lives that you can not even imagine. My son has taught many people to see how lucky they are in their perfect little worlds and made so many people wiser and better

Develop the attitude that when someone treats you or your beautiful son differently or with judgement, You will EDUCATE THEM! Quote to them and educate them when you can without embarassing Trey. Teach Trey that the world is going to be cruel at times when he is of age. Possibly let him know that it is your mission and his that we will educate the world to be better. I hope i don't sound bossy... It just makes me sick that woman is so rude. I have had it with ignornace at this point in life and in my career as a mental health specialist it sickens me.

When someone is starring, i stare back. If someone smiles, i smile back, if someone stares at times i say, didn't your mother ever teach you not to stare? Just know... IT IS NOT YOU, IT IS NOT TREY it is just ingorance and sometimes All you have to do is call people on it. Sometimes ingnorance is not being ingnorant. It is just not being educated. We can educate and make less ignornace.

mm
Comment by Kimberly Foernsler on September 15, 2009 at 4:41pm
Cori:

Sending a big hug to you right now. I'm so sorry to hear that you were treated like this. It's so hard even if you had known for years. I'm saying a little prayer for you right now.

Kim

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