MORE LABEL DISCORD.

A friend of mine posted this link to my Facebook wall…well, actually, she is the LITTLE GIRL that I used to nanny, except that she is now 22!!!!

Ouch, that hurts Mama.

To sum up, Aspies are pissed that their label is being considered (by whoever writes the diagnostic manual of mental illness) as no longer a separate diagnosis.

Instead, they want to use an umbrella diagnosis of “Autism Spectrum Disorder”  and lump them in with all of the “Autistics.”

Mama says, why the hell do they have still have autism considered a mental illness diagnosis when it’s a neurological condition?

Also, again, I don’t care if they call it the “Mama Don’t Play That” disorder.  Just make my insurance pay for therapy.

Click link below…

http://news.yahoo.com/s/ap/20100211/ap_on_he_me/us_med_asperger_s_diagnosis

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Hi, This is Autism.

A long time ago, back when Ro first got his diagnosis, I almost made matching shirts for us both, emblazoned with that bold statement.

Yes, this is me going back to the same old argument about labels, but I have new thoughts almost every day on this subject, so I must shaaaarrrrrrrrrrrrrreeeeeeeeeee with you! lol

Last week, one of my big sisters, The Tray, who just happens to have a 12 year-old daughter who is diagnosed “aspergers” was chatting with a fellow school parent about mundane kid issues.  

The Tray mentioned something about my niece’s aspergers, to which the parent replied, “AUTISM!!!  I didn’t know she had AUTISM???  Why didn’t you ever tell us??!!!!”

The Tray, being The Tray, replied, “Well, I haven’t needed to tell you about her diagnosis thus far…would you like me to tell you her bra size, because that’s pretty much equal information divulging???!!” 

Okay, maybe it didn’t go down like that verbatim, but knowing The Tray, that’s how I imagine it, and I bet it’s pretty close.

Anyaut, this brings me back to my constant contemplation of label etiquette. 

I don’t introduce my son as, “Hi, this is Ronan.  He’s six, and he has AUTISM!!!  AUTISM!!!  AUTISM!!!

Why does Mama need to share that on the first date?  It’s not like you will need a HAZMAT team to come and diffuse him!  I can see my need for divulging diagnoses if you are a therapist that needs to work with him, or if he does something inappropriate socially that may make someone offended. 

But really, do I need to announce this upon meeting new people every time?  Why not say, “This is Ronan, his IQ is over  140 and he can recite all the states and capitals in 40 seconds or less!”  Or why not share, “This is Ro, and he hates helicopters, but he can add and subtract far beyond his years!  Isn’t that special?!”

 It’s a tough road to navigate. 

I was talking to a mother last week who has a child that goes to school with mine, and she just couldn’t get past how he seemed “different” from all of the other kids his age.  She was just so embarrassed by all of his behaviors, and she had such a hard time with his uniqueness. 

Look, I don’t want my kid to misread “social cues”, in fact, he’s taking special courses and incorporating “social education” into his therapy schedule every day, but what I don’t want, what I worry about sacrificing, is his individuality – his strengths, his admirable qualities – his fabulousness…

Does that, should that,  need to be sacrificed with the “autism” label?

To that Mom that worries about her boy being so “different” –  will your child resent you for really wishing he fit into a round peg when he is square all along???

I thought her child was lovely.

I think my child is lovely.

I think my niece is lovely.

Sometimes, even though I know he needs to learn a different way, even though I know it carries pain, I think AUTISM is lovely.

I don’ t love that he has hurt… what Mama does?  But I love my child with AUTISM.  

Label or not. 

That means nothing.

And he means everything.

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Don’t. Mess. With Mama.

We had an IEP meeting on Jan. 21. 

The Sped coordinator said something to Mama. 

OOOOhhh, NO-HO-HO-HO she di’int!!

Here’s Mama’s response to that in a letter to the superintendent!

 

Mrs. A. – Superintendent

ABC Public Schools

123 Street

Somethington, USA

 

 

Dear Mrs. A.,

 

My son, Ronan James, is a student at The ABC School who is currently receiving special education services due to his diagnosis of Autism Spectrum Disorder.  Recently, Ronan underwent a 3 year reassessment by various members of the school staff to determine his progress.  We met on January 21, 2009 to discuss the results and to define new goals for the rest of his school year.

 

In attendance: Mrs. L – Special Education

                          M and T – Occupational Therapy

                          O – Speech Therapy

                          D – School Psychologist

                          P – Kindergarten Inclusion Teacher

                          Mrs. X. – Sitting in for Mrs. T.

                          Mama

 

During the meeting, we discussed the testing that was performed on Ronan, what each individual result determined and what the goals for the rest of this school year should be.  The school staff did an incredible job of conducting the testing on Ronan – not an easy thing to do, due to his difficulties with engaging and his speech/comprehension delays.  They continue to do an amazing job teaching, coaching, nurturing and caring for my child.  I am grateful to each of them for the dedication, time and love that they have put into helping my child along this tough road that he has.

 

That being said, there are only 5 hours (15 min.) in a school day.  If you refer to the evaluation by Ronan’s developmental pediatrician, R., M.D., she outlines the necessary treatment for his ASD, which includes 25 hours of ABA, 2 hours per week of Occupational Therapy, 2 hours per week of Speech Therapy and Social Skills training.

 

During this school year, I learned through parent friends that their child was receiving therapy through the school’s “home program”.  I was not aware that any services outside of the school day were available, so I inquired about this during the meeting.

 

I stated to Mrs. X that this is something that I knew would benefit Ronan greatly.  As you may or may not know, a child with ASD is very prone to retreating into his/her “own world”, often engaging in self-stimulating activities for long periods of time, if left to their own devices.  It is best to engage the child as much as possible in an effort to sort of “retrain the brain” from needing to escape so much – in other words, we want Ronan to join us in our world as much as he can.  We also want Ronan’s comprehension of language and social skills to improve.  This is dependant upon how often he is drawn out of his self-stimulation. His functioning ability as an adult, his happiness and his future independence all depend on this and it’s especially important to implement these therapies at this early age – before the window of opportunity closes.

 

While I have spent a great many hours reading and researching how to best engage/teach Ronan, the truth is that I am not a trained and licensed special education therapist.  If there is one available to provide therapy to Ronan for the 25-plus hours that are necessary per week, then that is what’s best for him.  When I expressed this to Mrs. X, she proceeded to inform me that “the school doesn’t provide babysitting services!”

 

Excuse me.  Let me pause here. 

 

I am still in disbelief that she said these words to me.

 

I am also very confused and obviously extremely upset by this inference.  Not only is it insulting and degrading to a ridiculous degree to suggest to a mother (who is trying desperately to get the appropriate therapy for her child’s neurological disorder) that she is trying to somehow dupe the school system into giving her some free child-care, but it is vastly the farthest thing from the truth.

 

It didn’t end there.  When I left the meeting, shaking, angry and humiliated, I planned to call the Head of Sped when the updated IEP was given to me, in order to set the record straight about my requests – lest there be any doubt as to why I would want more therapy for my child.

 

Mrs. Head of Sped explained that Ronan had been approved for 5 hours of “parent training” per week.  I’ve not heard of “parent training” and when I stressed that other mothers were telling me that they have ABA services in their home, she said “it might look like discreet trials, but it’s really a service to train the parent how to solve problems with their child at home” and then she informed me that I would “have to be very involved in this”. 

 

I’m not sure what has happened with other cases in the Somethington Public School system in regard to special education students and their parents, but this treatment is a blatant affront.  I am simply trying to get the proper help for my child with autism.

Who are these people to imply (without knowing me or my child) that I am looking to shirk my parental responsibilities on the school’s dime?

Let me give you some background on our situation. 

 

When Ronan was born, I worked full-time as a nanny to two families.  Ronan’s father worked in retail.  As a blue-collar family, we were struggling financially already.  I had a choice to put Ronan in daycare full-time, so that I could work.  I chose to pare my jobs down to one family part-time, and I got to bring Ronan with me to work.  I walked dogs and pet-sat on the side, something I also took Ronan with me to do.  We were still struggling.  Ronan didn’t sleep and wanted to nurse constantly – some of the first signs of his autism.

 

When Ronan was 16 months, we had him assessed by a developmental pediatrician, who diagnosed him with PDD/NOS.  Thus began our challenge of obtaining healthcare and proper services in the world of autism therapy.  We only got approved for 1 hour of play therapy per week from Early Intervention, even though our doctor suggested 25 hours per week of services.  When the doctor heard of this, he wrote a very angry letter to EI demanding more help for Ronan.  We got more hours, thanks to him. 

 

I quit my job to stay home with Ronan full-time, so that we could be home for therapies, and also to take care of some allergies/digestive problems that Ronan was having.  This required a special diet – all foods cooked from scratch, very expensive special ordered items and vitamins/prescriptions.   These special foods and vitamins had to be consumed by myself as well, as I was still nursing Ronan – a very difficult diet for both of us to maintain.  It also included many trips to different doctors and specialists – most not covered by insurance.

 

We continued to struggle financially, but we didn’t care, because we just wanted our child to get what he needed.  I had been reading and researching 24 hours a day about therapies and education for autism and from what I gathered, California seemed to be the best place to live for proper services. My sister lived in CA, and she offered to let us stay with her for a year, so that we could save and pay our debt down.  We moved across the country for a year.  While in California, Ronan was approved through their Regional Center for full ABA, O.T., Speech and Social Skills Classes through an excellent agency by the name of C.A.R.D.  During this time, Ronan thrived, even losing his autism symptoms to the point where he was indistinguishable from his peers.

 

When the year was up, we decided to move back home.  I was pregnant with Ronan’s brother and we were homesick.  I continued to stay home with Ronan full-time.  After the baby was born, I still didn’t even want to risk getting a part-time evening job around Ronan’s Dad’s schedule.  I wanted to be around my son as much as possible, and Ronan had an incredibly difficult time with anyone else caring for him, so I never even left him with a sitter – ever.

 

When we had no other choice, I started a job working overnights, because that would minimize the time I would have to be away from Ronan.  Every day, I make Ronan’s lunch and bring it hot with me (he has food aversions, and he eats better when the food is just made) when I am dropping his brother off, and I bring it into his classroom and give him a kiss. 

 

Every day since I have found out that Ronan has autism, I read and research, order and bake special foods and vitamins, argue with insurance companies about not covering therapies or doctors assessments (necessary for school services, but about $3,000) that are critical for my child’s treatment for his pervasive developmental disorder. We engage and redirect him as much as possible, and we teach him the same simple things – like asking someone for help instead of screaming when frustrated or looking at someone when speaking – over and over every day, because it is so difficult for Ronan to remember these communication skills.  We do home and self-taught O.T., speech, and behavioral therapies with him – bouncing on therapy balls, water or sand sensory activities, make communication charts together with the proper use of pronouns or grammar, and countless other things. 

 

We go on nature walks even when it rains or snow, because Ronan needs movement on a grander scale than a neuro-typical peer.  He works hard.  And he fights every day to fit into our world, to learn how to relate to us and other children his age.  It’s unexplainably difficult to watch him struggle with expressing himself or understanding others. 

 

We gladly continue to do and provide everything Ronan needs every day, because we love our child and his brother immensely and to question my involvement with my child, to insinuate that I want to get a free break on the school’s money.

 Well, that’s an outrage to me.

 

I resent it, and I think you need to talk to your staff, and let them know under no circumstances does any mother deserve to be spoken to in that manner.  These are people who are in special education, and who work with young children and families.  They must have chosen that path because they at one time found it rewarding, one would think.  Maybe you can help them remember that my son and I, and any other child and parent that they are working for (we are talking about tax dollars that you and I and everyone else pay) are not just a quota. 

 

After I reject the current one, I will be smart enough to bring along a well-schooled legal advocate for my next IEP meeting.  Hopefully, a better outcome will be had. 

 

If you get the time, please also stop by www.ronanjames.etsy.com.  This is Ronan’s web-site, filled with his beautiful art, something else that we work on with him.  He donates to charity – Autism, of course.

 

 

Thank you for your time,

 

 

Mama – Very Involved Mother to Ronan James

**In addition, please note that my grievances are exclusive to the two incidences with Mrs. X and the Head of Sped.  The school staff who work directly with Ronan on a regular basis (listed above) have been nothing short of exceptional**

 And there you have it, Mrs. X. 

 Don’t. Mess.

Sacrilege!

Mama has to work tonight!  On CHRISTMAS NIGHT!  An overnight shift!  Say it ain’t so! 

I played Santa until 2 am this morning.  The babies are happy and playing with all of their toys.  Now, Mama has to LEAVE!  Grrrrr.  Sacrilege!

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