About Me

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Mommy to lego and minecraft obsessed little boy and twin girls who love dressing in tutus or princess gowns and trying on Mom's makeup. All 3 of my kids have their special talents and strengths and their unique challenges. Autism, Apraxia, Hypotonia, Anxiety, Sensory Processing, Receptive Language Disorder, and IEPs are all a part of the language spoken in this house! Always on the go to one therapy or play date to another support group meeting. . .

Monday, December 22, 2014

Christmas Wish


Merry Christmas from our house to yours.

I was just reading an article on inclusion and thought of my friend Simon.  Behind every kid or adult who is included and a part of the community there is a family supporting and advocating. In this case a super mom who advocated passionately for her beloved son.

In high school I met Simon who was amazingly intelligent, funny, smiling eyes, and above all great kindness.  He was also nonverbal, wheelchair bound, and vision impaired. I would usually bump into him by the elevator. He went on to study at Temple University, where we again bumped into each other from time to time as we hustled to our classes.

I would love to say I was a great friend to Simon. I wish in hindsight that I would have been a great friend to him. I wish I was still in contact with him. I think of him often and rather miss bumping into him. I admire his strength and his perseverance greatly. I am sure he had his bad days when he cursed his disability and the many challenges he faced. I am equally sure that he is still embracing life and living it. He is a great guy and his mom and those who helped him along the way did an amazing job of ensuring he lived “inclusively” and I was blessed to spend some time as his “community.”


My Christmas wish for all of you is that you too be a part of an inclusive community whether you be a parent, family, friend, or advocate.  Never stop advocating.

I leave you all with one of my favorite Christmas songs and hope you all have a great holiday with your loved ones.

Friday, December 19, 2014

Brush it off. . .

Today is the holiday show at my son's school. His class has been practicing their 2 songs and its been tough for my son. Maybe its the diagnosis, maybe he's just stubborn, Whatevs. I discussed it with school and they agreed not to force him. He's been joining the autistic support classroom whenever it gets too much for him. Ironically they don't want to exclude him and I'm wishing they would. LOL. Life.

I purposely did not tell the grandparents because I know my son. I debated on whether or not to go.
One of my girls loved the show. The other one drove me nuts and got her thrills that way. Kindergarten kids comes out, nope not my kiddo. Where was my kiddo?  Watching Rudolph in his class. LOL.

I'm not angry. I was a little "woes is me" watching the autistic support classrooms and then the kindergarteners perform. It was bittersweet. It hurt. My eyes teared up. And then I came home and whined to my hubby. Poor guy. Stuck at work listening to my poor us moment. My kiddo would've looked adorable in his Christmas Lego shirt. But ya know he was probably more thrilled with watching tv in school.

Autism changed the path I expected to take. Sometimes it sucks to be hit with the reality that our path is different. It is what it is, and that's okay. C'mon repeat it. Doesn't that approach make it easier?

So what if he didnt want to do the show. Would've been nice, sure. But is it necessary? Will it define him later on? No. There will be plenty of things that JD or the girls will chose not to be a part of. And as they get older maybe they'll one day do the holiday show or actually participate in ballet class. Who knows! But it's going to be their choice and I'm not going to cry because I always dreamed or expected things to be different. I can waste time, tears, and energy over "what could've been" or I can live in the moment and not miss 1 single second of their childhood. Once you let go of "expectations" and of the "shoulds" amazing things happen.

Personally, I'm glad and amazed that he went to school out of uniform. I really think he didn't even notice what I dressed him in this morning.

Tuesday, December 2, 2014

Finding Hope


I am struggling lately to find hope. Last Tuesday my son had a rotten day. He just lost it in a rage and fear miasma of a meltdown. The emotional explosive child lasted until about Sunday.  Nothing seemingly physical other than a cold.

I am scared of the unknown, of what’s around the corner, of what's next.  I’m scared it’s perhaps a mental health issue or an unnoticed seizure like we had last Christmas? Is it just simply that the honeymoon period is over for kindergarten? I have no certainties with autism. That is perhaps the scariest thing as a mom.

Yes I have consulted with our BSC, TSS, special education teacher, his regular teacher, the school psychologist, our own child psychologist, maybe even the magic 8 ball, the list is exhausting. Yes perhaps we need a new functional behavior assessment now that he’s used to the routine of school etc. Yes perhaps he needs an observation to see if the TSS is effective. Yes, I’m sure we could consider medication. But pardon me for wanting to exhaust all other options before I dope up my kid when he’s 6.  Yes maybe it's a gut issue. Yes, I’ll keep praying and hoping. Yes, Yes, Yes alright already!! When we reach a point where we can either cry or laugh, sometimes we laugh at the insanity, at what is our life, of the platitudes we are told.  

I know everyone means well and in some way it’s appreciated. Offering trite expressions meant to convey sympathy or comfort—you have to take a step back and consider our reality. The reality of daily life as the mother of a child with autism is that there is no certainty and we are so beat down by fighting for all of their legal rights and privileges, struggling to reach our child, and pushing them to progress and succeed despite their many challenges-- we are exhausted and almost stripped of hope and good will. Most days I think I suck so badly as a mother that I find myself crying in the shower. I cringe everyday at school pick up. I hold my breath each time I check my inbox praying I don’t have an email from school. I consider psychiatric medication for myself just to get him to school in a good mood and to get homework completed.

Haven’t you heard if you have a child with special needs be it autism or apraxia or pick your disability, it’s always somehow the mom’s fault. Guess what, I already blame myself. I am helpless to adequately help my child. It doesn’t get much worse than that.  I see my child hurting, hugging or praying isn’t making it any easier or better for him. Instead just ask us what we need, tell us you’ll pray for us, that you believe and have hope. Don’t you know most of us parents are struggling with our own miasma of emotions? Not a day goes by that I don’t cry. I wish I could make my son feel good about himself. I wish I could make his day easier for him. I wish I could take this challenge away from him. I wish I had answers. I wish I was a better mother.

 If anyone knows WTF is causing the protests, refusals, the yelling and screaming and escalated meltdown and tantrums while in class and at home when doing a writing lesson can you please let me know? If anyone knows WTF is going on and how to reach my kid, can ya raise your hand and let me know? But if you just want to tell me it’s my fault, and then don’t bother. Got that covered. If you tell me to continue to pray and that it'll get better, I might cry or laugh. Depends on the day. My response might be like Jack. Don't take it personal. Sometimes when we're tired of crying we laugh, because that's all we have left, so we just smile
    

Monday, November 17, 2014

What to share. . .

As my son gets older I struggle with how much to share on this medium. It's not about protecting folks from reading about the nitty gritty of Autism. It's about protecting my son's self image and autonomy. One day he's going to be reading a lot of stuff about his disability and I don't want him to ever feel shame or embarrassment as he reads my posts, should he care to do so.

It is normal to want to shield your child from being viewed in a less than perfect light. As his mother, it is a struggle between advocating for his needs, portraying an accurate view of his challenges so others can be helped or help, and protecting him. So for a bit now I haven't written. Mostly because I've had this unfinished post sitting there.

I am incredibly proud of him and how he continues to rise to his daily challenges and changing needs. He amazes me daily. Yes he constantly makes me want to pull his or my hair out while laughing at the absurdity that at times has become of my life. But the reality is that our household is a bit different. For example, he has night terrors pretty regularly. When he's throwing up at midnight, I'm battling with a screeching 50 lbs of terrified kid who's still stuck in a night terror. I must sound like the words meanest mom when I'm screaming at him to "wake the hell up" only to be heard over his screaming that's waking the dead. Or any other moment that seemingly should not sound like someone is being abused or killed but that for whatever reason in our house becomes a production. Seriously, I would not want to be my neighbor. Some days I don't want to be ME! And most days I want life to be easier.

I want others reading new or old to autismland, to know (1) you are not alone, (2) keep going, don't give up (3) ask for help when you need it because this life isn't easy. (4) i'm learning too.

I may not always post the raw truth of some of the challenges that we've overcome or live with. Sometimes its because it's too deeply emotional and personal and I just can't write it down. Other times I just want to be positive or ignore the rough spots. And most times, I just don't want to burn the sausage I'm cooking. Hubby if you're reading this, I may have burnt the sausage a bit because I was umm busy writing. Sorry. Just eat around the charred parts. I have lots of blog posts and things I want to write about, finding the time to write them is the challenge. Those twin threenagers keep me busy.

It's not always Autism.

My kindergartner is doing well in math, science, and music. He's struggling with writing (fine motor/vestibular issue) and reading. Unfortunately my kid is incredibly stubborn and once presented with a challenge or struggle most of the time he deems it worthless and simply refuses to do it. Overcoming that mindset is pull out your hair I need a drink worthy. We need to find some way to make him understand that he has to finish assignments even when its something he doesn't like or that he struggles with.

He's been acting out and struggling with completing his tasks in school. Classic avoidance behaviors. Age appropriate behaviors. I'm being told that this is AUTISM and something to be handled by his IEP or functional behavior plan. The special education teacher sent me an email to let me know what's been going on. I appreciate it. I of course replied with some suggestions. But I also walked away from the email until I thought about it. I wanted to say:
(1) have you discussed anger management techniques with the kid who name calls the classroom teacher?
(2) Have you discussed a behavior plan with the kid who clings to the door frame in an effort to stay with his mom every morning? (separation anxiety, extreme).
(3) Have you discussed positive behavior visuals and time outs with the kids who seem to thrive on being rude or punkish while standing in line every morning? 

Oh that's right, they don't have a diagnosis and so you can't blame it on Autism with them huh? So I guess all those behaviors are perfectly normal. It's just my kid, the only 1 with the diagnosis in his class which is the abnormal one right?

So of course let's consult his behaviorist, let's send me emails which I debate over an hour to reply to, let's implement a sticker chart and appropriate "reward incentive program" for him. But I'm still saying it's not Autism. This is just a stubborn 6 year old behavior.

For the record, I have no beef with how they're handling it. I appreciate being asked and included. I appreciate their willingness to truly make it an individual education plan. I'm just annoyed at the system and process in place. In other words, it's not you dear teacher, its me looking at the big picture. Don't take it personal. It's just an autism mom annoyed that her kid is getting singled out and its all a big production of let's follow the iep review process while the other kids who likewise don't want to do the work don't get singled out and its looked at just normal behavior. It annoys me. Its personal for me dear teacher. You have my heart for 6.5 hours each day and most of it is a challenge for him. And I feel he has to somehow prove he's well behaved all the time to earn his "sticker" while other kids can misbehave and that's okay. And society wonders why kids with ieps grow up with self esteem issues later on in life. . .

Wednesday, October 15, 2014

Signs you're maybe a Mommy

10. Right now there's a diaper, kids underwear, wipes, a hot wheel, a girls hair tie, a crayon, and a candy in your purse somewhere.

9. You will step on a noisy painful toy at 2 am in the morning no matter how careful you think you are being.

8. You will never leave the house on time ever again.

7. After 2 kids, they all become a generic "you" or "kid". They're all misbehaving somehow right?

6. You can't remember what you were saying. What?

5. You dry yourself off with a "shark" hooded towel after a quick shower.

4. Your voicemail has a closer relationship to those few that still call you regularly than they do you. Most people have forgotten the sound of your voice over a phone.

3. You can NEVER EVER hide. The tiny dictators will find you. You will never have the bathroom to yourself- again. Ever.

2. You bathe, eat, and exercise at weird times throughout the day whenever the opportunity arises.

1. You're serving a life sentence and it's both awesome and awful depending on the week, day, hour, or second.

Tuesday, October 14, 2014

The 6th Birthday Letter

I've written my son a letter every year on his birthday. This year I'm posting it on my blog. One day he will get to read them. Perhaps when he's older, when he becomes a father, or maybe when I've died. I hope he knows these 3 things remain constant throughout the years that have passed and those to come: I love him, I'm proud of him, and he will always be my baby.

Dear Buddy Boy:

Today you turned 6. The morning did not start off too well. You were 20 minutes late to school. We had 2 time outs before we left the house. Boy were you cranky. We rushed down the block in sweatpants and a polo shirt because your dress pants weren't clean. Mommy's fault. I crossed my fingers and hoped the rest of the day went better for you.

It did! At the end of the day you rushed out of those doors right to me, grinning, giggling, wearing this ridiculous birthday crown and birthday stickers. The utter joy that is you all bundled into that smile and exploded out of the glint in your eyes. Oh the love I feel for you! There aren't words to express or fully explain. It is just love, simply put. Huge and encompassing all that I am and all I ever want to be.

I became a mother 6 years ago today. It was a role that I had always feared and yet desperately wanted. For close to 9 months I was poked and prodded in places better left unnamed. My a$$ was purple throughout most of the time you were summersaulting in my uterus. That week in the hospital I would unwrap you and just look at your toes, your fingers, your eyes. Just you and me, and you were utterly my son.

By the way, I forgive you for calling me stupid and world's worst mami this morning. You're just like your daddy, making me laugh even when I'm mad at you. Te quiero baby.

Love,
Mami

Wednesday, October 8, 2014

Doing well, no Awesome.

The kiddos school has a big brother/big sister program for reading. They pair up the kindergarteners with a 5th grade class to help teach them reading etc. My kiddo hadn't been paired with someone until today because we wanted to give him a couple of weeks to get used to the routine of changing classrooms and the expected activity. 
 
His BSC and TSS were there. He didn't need them. JD was able to stay on task and was engaged through out the whole activity.  His BSC texted me about it because this is such a big deal. I must admit I got teary eyed. I am so incredibly proud of him everyday but more so on days he overcomes his disability.
 
Too often we focus on the challenges and the barriers that inhibit their inclusion into neuro typical peer activities. We tend to focus on the negatives because they are what we're tackling next. But I want to take time off today to celebrate the positives.
 
What's going well in my 5 year old's world?
  • He's so bleeping present and engaged with everything.
  • He's using self affirmations to deal with the anxiety and rules.
  • He's using words to express his feelings without prompts.
  • He's excelling academically.
  • He's adjusting so well to a new everything at school- staff, environment, new TSS (1-1 aide), new rules etc.
  • He's playing nicely in the playground with classmates.
  • He's phenomenal at building legos.
  • Plus he remains an excellent hugger.
  • And he's a bit (a lot) of a smarta$$.  (he's our kid, of course he is)

I'm so incredibly blessed to have a 5 year old boy who is just the love of my life. He's simply Awesome and a bit of a smart a#$$. If I could bottle up that incredible emotion and sell it, I'd be a billionaire. I write this not to gush about my kid (well maybe an insy bitsy bit) but also to give you hope. This has not happened overnight. But we've also given him time to be a little boy. We have to remember they are people 1st. They are not just their "label".
 
We've screwed up some, maybe lots. But we've never been scared to try something no matter how crazy it sounded- we did dietary interventions, vitamin supplements, detoxed baths (Epsom salt, salt, vinegar, oils). People were like "ya'll are cray cray" and we'd be like "nah, nah, nah, sticks and stones."  But to us, to not question and blindly accept no cure, nothing to be done as fact seems crazy.  So if you think or hear about say sock monkey therapy and it seems to help, we'll probably give it a try too. Because (mostly me), I'm a bit crazy in love with my kids and desperate to try anything to get them to overcome their challenges.  If I give up then I let the negative win and I know he's capable of anything. He just needs time to shine and extra support.
 
So in summary, my kid is doing well. And I'm so freakin proud. I'd probably throw a party if I wasn't so exhausted.

Sunday, October 5, 2014

This week in review

This is kiddo's first full week of school. He also had his 1st "tantrum" / "mini meltdown". We were waiting for them- on pins and needles really. We knew they would happen. And that's the tough part of inclusion. Because you know they're going to have a mini meltdown or tantrum and you know there will be kicking/screaming/crying what have you's and you know the typical peers will observe. And maybe they'll go home and tell their parents and well then you want to protect him from the gossipy judgy parents.

Personally I could give a sh*t, I'm not one to give a crap what people think and I have no time for BS. Judgy gossipy people suck especially when you've got a kiddo who can feel their criticism and who just wants to be liked. When kids call him a "weirdo" in the playground or wherever we're at, my medusa snake hair gets unsettled and only the thought that they're kids keeps them safe from my wrath but they definitely get the "you are not a kind person" look and their parents get the "WTF kind of parent are you that you don't correct it? How can you be teaching or allowing intolerance? Get off your butts, put the damn cell phones down and be  f*king parent!" look. I can't stand lazy parenting.

F*ck it, he's going to have a meltdown, yes he has autism, get over it. Your kid isn't perfect either Ms. I have a texting addiction on my new 1 inch bigger phone. Don't you know size doesn't matter?  It's how you use it sister? But he's got killer social skills, he knows the proper back and forth of a conversation, he knows good social behaviors vs bad. And he will one day understand that not everyone is nice and that hopefully won't change who he is or make him as sarcastic and porcupiney as his mommy. My job is to teach him how to be a good person and to teach him coping skills with this crazya$$ world that thinks common core math makes any damn sense and in this world where building a damn fenced wall around borders is helping in anyway.

His teachers provided feedback on how he's doing, while nice to hear, it didn't surprise me. That's just who he is:
A child from the autistic support classroom was pulled in for the learning activities and was having a difficult time transitioning. Anxiety. My kiddo stepped up, said: "it's okay to be upset." and he then modeled the correct behavior and proceeded to show his classmate how to do the activity. See that didn't surprise me. That's my kiddo, that's who he is. Underneath the hyper impulsive child, is a kid who loves to help and laugh. But it surprised his special ed teacher and his 1-1 aide. I wish other parents would take time to see him for who he is. I wish they would see beyond his disability. And my life long challenge and commitment-- is to scream inclusion until they get it, until inclusion is the "norm". Until my kid is the "norm" and the judgy biotches shut their damn mouths.

#endrant

Saturday, September 27, 2014

Parenting

The hardest part of parenting is not knowing if you're doing it right. Or how badly you're screwing it up.  If only I could look into the future and see how it would all turn out. The unknown is scary as a parent. My daily prayer is "Please God don't let me F- this up too much."

It hurts to see your kiddo struggle. It hurts to see him unable to control his body and bring it back under control. Nothing has hurt me worse than when my little 5 year old boy described how much he felt his body was "broken" because he couldn't stop himself from making bad choices (misbehave) or his impulsive behaviors.

I don't want to romanticize my emotions but really it floored me and it hurt so much because its partly my fault. Yes, its my fault that at times I suck at being a mom. Times when I can't control my own impulsive behavior and when I should remove myself for a time out-- those times when I'm so frustrated that I end up screaming and throwing my own temper tantrum.

We ended up discussing "No David!" by David Shannon. He loves that book and really it's a great way to discuss how we're really just loving them even when it seems that all we do is yell at them. We cuddled and group hugged and he went on his day. But it has remained on my mind. A day latter and I'm still shook up about how he's feeling about himself. I wonder should I take him to the psychologist to discuss or if I should work on ways to build his self esteem. So many ways to doubt yourself as a parent and the worry can drive you nuts.

This parenting shit ain't for the light hearted or those who only think they want to be parents. And I'd like to think that those of us who second guess or who worry are the ones who are striving to be better parents and better people. But maybe that's just how I fool myself into thinking that I'm doing okay.

Tuesday, September 2, 2014

Mundane life and normal is relative.

My facebook feed is full of back to school pictures. I'm torn between complaining about this stinking humidity, mourning the end of summer, or worrying about the school year. August is over, our stress free month: free of therapies, free of the endless paper trail left behind 2 main diagnoses. The kids had lots of sleep overs, lots of playgrounds, lunch with the grandmoms, pool time in the backyard, walks, endless free play. August was so much fun. It was almost like having a "normal summer".

And now, we're back to the anticlimactic mundane routine. I'm trying to iron out their Fall schedule. Soccer, swimming, dance, and therapies all must be fit in. Thursday nights I need to be at swim and at dance, I'll have to clone myself and that's all there is to it.  Some other activities that the 5 year asked for are a lego club, baseball, and golf. Golf? Seriously kid? You cheat at mini golf but you wanna try golf?

Oh and the therapies. Sigh. Will there ever come a time when we are therapy free? I am very cognizant of how trivial and mundane these worries may seem. The progress we've had-- Wait for it, Extraordinary. (Please read that as if Neil Patrick Harris said it in his Barney from "How I Met Your Mother" voice. But still to some, my worries are trivial. Troubles after all are trivial. And normal is relative. I am glad of the mundane. Each day that I am their mother, I am blessed and I fall a little more in love with these kids. I am amazed by them. Yes, I am raising them, but I am learning more from them than they learn from me.

But still, getting back to my mundane subject: I want to figure out this Fall schedule. I'm glad for the mundane. Gladly accepting my mundane life of being a mommy of 3 with all the specials and diagnoses. These 3 are my miracles and although our wonderful summer is over, I'm taking a deep breath and leaping into Fall. here we go again. Let's hope this is a good school year!

Monday, July 21, 2014

We need to do better

Two weeks ago we met an eight year old boy and girl, both with autism and intellectual disabilities/delays at a playground behind a school. We greeted them and their aides. We eventually asked if they would like to play with my twins. Jill didn't care too much, she was content to sit under the tree. It really was a hot morning. Jack didn't move from his spot, BUT he was interested. (Not their actual names, but let's pretend they are).

I asked Jack if wanted to play with my twins, he could go down the slide with the girls and take turns, or he could climb the wall climber and take turns. It would be fun. Don't ya know he walked over and started to play with my twins? And don't you know even though Jack never verbalized, he played great with my twins, and they had no problems communicating in the language of Playing Children?

The aide turned and said almost flabbergasted- "He never does that, he's never social." 
Hmm, my thought? "Maybe you need to do better. Maybe you just need to understand his world instead of expecting him to join yours. Maybe we need to do better. Inclusion freaking works! How many more studies must we shove down the throats of this city's school board until they understand secluding our kids in autistic support classrooms is not the answer!"  But I digress.

A little later I asked my twins if they wanted to drink some of my iced tea. It was a hot morning and we'd been there a while. Neither of my girls wanted too. Jack went all Ninja Stealth on me and before I knew it he was standing next to me touching the straw and cup holding my iced tea. Aide was freaking out, "OMG, is he touching your cup, Jack you DON'T DO THAT!" She was screeching and coming over to grab his arm by the end of the sentence. Lady needed a chill pill. I  wanted to say: "Lady, I have 3 kiddos, no biggie." Instead I laughed and quickly calmed her down.

I said to Jack: "Honey, I can't give you my iced tea because I don't know your mommy. But maybe next time I'll get to meet your mommy and I'll bring you your own iced tea and ask her if I can give it to you. Would that be okay?" 

Jack nodded and motioned for my cup again.
"Jack, are you thirsty? You want some water?" I asked.
Again he nodded or he may have said yes. Either way, verbalizing was pointless because I understood. I turned to his aide and said "there's a water fountain inside if you want to fill his cup."  Turns out Jack had spilled her water bottle earlier and his aide hadn't realized he'd probably been trying to tell her that he was thirsty. 

I wish more folks would make a better effort to understand and enter an autism child's world. Why do we always expect and demand that they enter our world? If we hadn't been there, would that child played? Would he have remained thirsty?

I left soon thereafter. The experience has remained on my mind. We need to do better. I don't know how else to say it. We, as a society, need to do better.


Tuesday, July 8, 2014

Live and learn

Over the weekend it became very apparent that my youngest twin was scared of JD. Screaming in absolute terror and drama. JD thought it was a funny game and a chase ensued. I should have taken a time out. I should have, could have, done a lot of should/coulds. But I didn't.

I screamed at all of them to stop running around. Hysterical giggles and hyperactive behaviors ensued. Frustrated, I grabbed him by the shoulders to stop the chasing and got down to his level and in the heat of the moment said stuff like: "Don't you understand? Why don't you listen! She is scared of you. Your sister is scared of you. Stop chasing her. She doesn't like it!"


Why is it a big deal for me? I essentially was trying to make him feel shame over his behavior. However, his behavior, his misunderstanding the social cues, are a part of his disability. I should be ashamed of myself for failing to understand his perspective, his "causation". In that moment, I became one of "those" people whom I hate because they're selfish and ignorant. Except, I'm not ignorant, I know better, and in my utter exhaustion and frustration, I was mean.

The silver lining, he didn't understand. Later, I apologized to him for my mean voice. At bedtime both hubby and I reinforced the expected behavior of "don't terrorize your sister, gentle hands, gentle feet."

That night I stayed up late reading most of the night. Running circles in my head was the sick feeling of my behavior. I am their mom and I know better, I am better, than today's moment. How do I fix the main issue? One of my girls is scared of her brother and runs away from him because of how often he hurts her, unintentionally, when they play.  I hurt for both of them. I'm mommy, why can't I fix this today? Today we're working on facilitated social play. We've also doing Green, Yellow, Red for behaviors (Thanks Pinterest!). We live and learn. Parenting- its a journey of self discovery.
Song going through my head as I write this- https://www.youtube.com/watch?v=swVoXHVW-jI
especially the first lyrics- It should be the parenting motto.

Tuesday, June 17, 2014

Sighing, its done!

Did you all hear me Sigh yesterday around 2 p.m.  I'm still not sure if it was relief or anger/frustration. We have a signed IEP for my oldest. For better or worse. I was a sprectrum of emotions through this process. Mostly frustrated and infuriated. But I survived!
 
My reflections of this process-- it sucks. Well it does. It makes no sense whatsoever, staff is overwhelmed and understaffed, rushing to be compliant, and providing minimum support in the most convenient way possible. My perception, but there you have it. 

His evaluations- rushed, no warning for the parent that they were happening or when, didn't listen to the parent's input. At one point I received a call from our TSS to ask: "is it okay for her to evaluate him? And can I share diagnosis, they have the wrong one." I wonder which one they had? I forgot to ask. LOL.

 His Speech evaluation was "yes dear, I know its our day off from school but we'll just go in for an evaluation." Sure, all 5 year olds would be cool with that right?  HAHA. It went awesome. And I do not mean that in a GOOD way. Then she didn't finish and wanted to score it anyway. She wanted to include our private speech evaluation-- umm it's well over a year old sweetie. Clearly it would make more sense and be fairer to the child to just finish right?  Then she told the school that she'd finished the evaluation and scored it. I was LIVID. On the IEP-- Speech evaluation will be completed in Fall 2014 when school resumes after summer break. We'll revisit speech goals and services then. You better believe I'll follow up.
 
The school psychologist calls me and tells me: "I think regular curriculum with supports is the best option for him, what do you think mom? It was a true joy to meet your son. He's adorable."
I nearly fell over. Finally, a good call and a compliment!

I harassed the crap out of the school special education liaison. I didn't get a draft or an invitation but hey via email works. I'm just saying, the proper process was not followed. Well it wasn't!

My issues and concerns with being presented with a summarized evaluation report (or whatever they call it), a Proposed IEP, and a Proposed Functional Behavior Analysis and Behavior Plan:
  1. How can we be reading a complete evaluation report when the speech portion isn't complete? Why would I sign off on speech, when again, it's not complete and these scores are invalid?
  2. If you had a proposed IEP draft, it would have been nice to get an advanced copy of it, so that I could email my required changes and additions, thereby avoiding this 1st meeting where nothing got done. Yes, I am the type of mom advocate who requires specific goals in the IEP. I am not the mom who blindly signs and agrees. I know my child, you do not. Therefore, I will advocate. DEAL with it! I don't give a crap that this annoys you. You don't have to like me. Yes, that would be ideal, but I'm ok with just professional politeness. I'm not looking for a BFF. I'm looking for a team that can learn to appreciate who he is and how much potential he has.I refuse to let you set your expectations LOW for his academic future. If this was YOUR child would you want someone to have LOW expectations for him? 
  3. How can you make a FBA and a behavior plan based on what the summary report says when you've yet to MEET my kid? And it had another child's name on one of the goals. Seriously? Cut and Pasting-- how is that Individual? Our Behavior specialist presented our current FBA and behavior plan and said, we'd like to incorporate this as part of his IEP. Bam!
  4. The IEP-- stated that my child Brandon* (that is not my child's name) requires special education services because he has educational delays. Umm, okay. . .even if you argued that you just wrote the wrong name there, my child is testing somewhere between a 1st grade-3rd grade level depending on the subject. Doh! 
 
In summary, the IEP process SUCKS. It's ineffective. Staff are so rushed and so overwhelmed that they cut corners such as cut and pasting, and presenting a proposed IEP while evaluations are being conducted, because they have a deadline to meet and they need more staff support. They do, they are drowning. And as a parent, that is truly horrifying. I'm sending my child to them and they are drowning in their work responsibilities. BTW while I stayed professional, I am honest enough to admit that I was a B*

As one of my girl friends said laughing at me: "You were a B weren't you? HA! C'mon you know you were!" Yeah I was. I don't care.

Playlist for surviving this process
 Katy Perry & Jodi DiPiazza http://youtu.be/QX-xToQI34I
I will Survive by Gloria Gaynor http://youtu.be/ZBR2G-iI3-I
Everything's Gonna be Alright by Bob Marley http://youtu.be/zmwue6Jq4KA
I Wanna Be Sedated by The Ramones http://youtu.be/lQeo3OfuEDM

Monday, June 9, 2014

An Open Letter to Philly Librarians

An Open Letter to the Library Staff of Philly's Public Libraries & the administration:

I have 3 children, ages 3,3, and 5. My kids have apraxia, just woke up from a nap syndrome, and autism, respectively. They are children, learning, exploring, and testing boundaries and their independence. Sometimes it is difficult to verbally express their needs. Sometimes its hard for them to self regulate. Sometimes they will respond to their environment in unexpected ways. This is toddlerhood, this is childhood. This has nothing to do with special needs, not really. In fact our experiences during our infrequent visits has much to say about YOU and less to do with my kids challenges.

From adults my children expect Politeness: be it tolerance, acceptance, or a polite hello, even a smile would do. They also expect adults to teach them how they should behave by modeling acceptable behavior. Frowning, sighing in exasperation, glaring in vexation, ignoring them, and even telling them rudely that it was "a Library, not a playground" are perhaps not the best way to show my developing children how to behave. Maybe a children's librarian could try to engage the unruly children in an impromptu story time or pointing them to a crowd favorite book, even engaging them in a silly how are you conversation would be helpful.  My expectations are high, I realize. Apparently managing a simple greeting such as eye contact and a smile were to taxing for you. Huh, maybe social skills are challenging for more than just those on the autism spectrum.

Were my kids loud? Absolutely, at times they were. The squeals and tantrums of a 3 year old are LOUD in a big quiet room as are the vocal stimming of a 5 year old who is trying to drown out his sister's protests. I am sure it was exasperating.  And yes, believe it or not, I was trying to keep her quiet. I was trying to teach her patience, tolerance, respect for others feelings. Isn't it ironic that the staff at the library could not be a bit more tolerant and patient with toddlers? Toddlers!! I half expected to be asked to leave with my offending and evil toddlers.
Perhaps we can also work on timing and to pay attention to social cues, there go those high expectations again. The guard picks that moment when I'm half carrying, half dragging a droopy tantruming 3 year old to come over and shush us. Gee how helpful, thanks! I made no snarky reply, I just ignored him and tried to redirect the other 2. Shouldn't he have been over by the gate guarding the stale books and outdated videos? He's in a uniform and I want my children to learn respect for those in a uniform. I am, as I've mentioned, teaching by example even when I almost bite off my tongue.

Two of my kids were dealing with sensory self regulation issues while their sister screamed and ran away, acting her age. Running away from mom is a favorite game when you are 3. All kids do this. But mine could not stop themselves once they started, it's like a chain reaction, one starts then the other 2 follow. They could not help themselves, they could not quiet themselves, they tried and were doing their best. They were excited to be in the library and while I wish they had been more quiet about it, they could not in fact do so. Again, they are 3 and 5. It is hard to be quiet, they are still learning.

Dear snarky children's librarian when I said, "it's rather hard for children to stand still and be quiet. Spectrum kids and sensory kids, especially, have a hard time. They are doing their best, please don't be rude to them." I was in fact being honest. I was not being that mother with the unruly kids, who lets them run around and doesn't parent.  Neither was I being that mother who doesn't recognize that her kids are out of control and need discipline. I was, however, that mom that was trying to teach TOLERANCE, AWARENESS, and trying to get you to be better at your JOB! I walked away with my kids. What pissed me off was that my 5 year wanted to know why that lady at the library was mean. Uggh. I think my poor bitten tongue has gone numb.

Dear Philly Librarians-- if there is one of you out there who is truly CHILD FRIENDLY and CHILD AWARE, truly child friendly, please let me know where you are located because we'd like to visit your branch. Dear Free Library of Philadelphia, a little "special needs" training during your professional training day off later this month would perhaps be timely!

And THANK YOU to the lady at the check out desk. She was the only one who said hello and smiled, even talked to my kiddos. Thanks, truly, from a tired aggrieved twingle mami who appreciates kind manners.

Wednesday, June 4, 2014

The Squeaky Wheel

This week we have an IEP date for my son's transition to kindergarten. YAY! I have been a PITA. I have. I have emailed, called, and otherwise stalked to ensure we have everything settled by the end of the school year. I don't want my son to be lost in the shuffle.

Now things in the School District are not well. There is no budget in place. The district just reached a settlement with parents to avoid "autism shuffle "whereby parents will be given prior notice before a child with autism is transferred to a different school. Schools are operating in a no frills, minimal budget. Free charter schools are by lottery and sibling preference and once again they do not have to follow IEPs. Private schools and religions schools-- once again don't have to follow IEPs. For a child with an IEP-- public school is the best option to have the ability to enforce an IEP and to have legal recourse, should you need it. Some charter schools only have had "autistic support" classrooms for a year or two. Some are only "life skills".

This transition to Kindergarten is absolutely scary and stressful. IEP is on next Tuesday. Speech evaluation is on Friday. We are pushing for the inclusive classroom and hope we can craft the IEP to truly meet my son's individual educational needs. Hold your breath, hold on to your seats, this meeting is either going to go very well or it'll be an educational opportunity for the rest of the team to think out of the box. I'm going to advocate and I'm going to make sure he gets the supports he needs to make progress and learn. Yes, I'm an autism mom, I'm learning how to advocate, and I have no problem being the squeaky wheel. None whatsoever. Deal with it.

Wednesday, May 21, 2014

All about the Peanut

This one is for my baby girl, the cuddle bear, the girly girl extraordinaire. Cemily Peanut loves all things pink and frilly, she's super sensitive, loves cuddles, fuzzy blankets, stuffed animals and mani pedi's with mommy, and picking her nose. Yes, you read that right! Her favorite hobby is digging for those boogers. She's resisting potty training because "I baby mami! I baby!"

While her brother and sister have spent countless hours in therapies, Cemily  has spent countless hours with mommy in the waiting rooms. She has been my constant companion, holding my hand, while we walked countless hospital hallways while waiting for another evaluation to finish. For her, for us-- this is NORMAL.


Cemily is shy. She comes out of her shell when it's just her. It's almost like she intuitively knows that her siblings personalities crave the loud crazy attention whereas she's quite comfortable cuddled up in a blankie on the couch playing on the ipad. When she's not happy you meet Diva Princess! The world has ended and wow are her lungs strong!

My Peanut girl-- I just want to gobble up her sweetness some days. A hug with her just soothes my soul. Now if she'd only use the toilet and stop picking her nose. Really, sweetie, mommy does not want you to share your boogies with her. Please, keep them to yourself.

Why do we call her Peanut? Because she's tiny compared to her giant fraternal twin.

Tuesday, May 20, 2014

Clouds

Yesterday on the way to Zumba my mind wandered and I thought about lost baby #4.  I had to pull over and get myself together. Somedays I can process the emotions and be fine. Other days when my mind wanders I start thinking oh he'd be this age, he;d be doing x, y, z. And on those days, its like an emotional tsunami hits me.

I pulled myself together and rushed to class. As I turned left the sun was setting, clusters of pillowy clouds sweeping across the soccer and airport fields.  Suddenly the sun burst from that lovely cloud. It was beautiful. And then I still felt sad but accepting of it.

I believe in Heaven, I believe in Good things. And I know that my baby's soul is up happy. And that's okay. And things will be okay. Sometimes there are moments when clouds send us just the right message at just the right moment.

For those of you trying to conceive, getting over a loss, or struggling to maintain a pregnancy-- HUGS. You are not alone and it is not your fault. It sucks and it hurts, HUGS.

Friday, May 9, 2014

Christina went missing

http://articles.philly.com/2014-04-11/news/49035184_1_death-services-christina-philadelphia-medical-examiner

http://articles.philly.com/2014-05-08/news/49693091_1_christina-daughter-liza#UO4M8e68XIBzI2HC.01

This poor woman died after her caretaker lost her in Macy's downtown. Apparently the caretaker was shopping while she was employed caring for Christina, 37, who had autism. Christina was a year old than me. She had a mother and a sister who are grieving for their lost family member. Meanwhile this city forgets her and pushes her aside like yesterday's newspaper.

We don't know how she died, how she came to be 5 miles away from the store, how her caretaker lost her exactly or why the caretaker was shopping while on the job. What we do know-- her mother is sad and wants answers. The news did an article on Christina and now the D.A. is paying more attention to her death.

It infuriates me that someone who had little say in whether she wanted to go to Macy's that day is being neglected and forgotten even in death.

We've all seen the groups of disabled folks walking the malls in groups with their caretakers. Every time I see them I think, I wish I had their family's phone number so I could say, "Hey did you know your son, daughter, etc is at the Mall with their caretaker the caretaker is shopping? Is shopping an approved community outing or a part of their life skills plan? Do you KNOW?" 

Because if that was my son, daughter, father, loved one who was vulnerable and dependent on another's care and supervision-- I'd want to know. And I'd also be furious. Christina's medical assistance, her social security disability income, Christina's benefits were paying for that caretaker's care and supervision. They were NOT however paying for that caretaker to shop to such an extent as to lose Christina! Christina had time to ride the escalator (as can be seen in store security cameras) and somehow walk out the door of a busy center city store and end up 5 miles away, half naked, covered with trash can lids, between 2 cars.

Surely the caretaker had time to 1) notice she was missing 2) alert the store so that doors could be closed or supervised. Surely the police had time to issue a missing person alert on the news --- oh wait we don't have a Missing Autism Alert like an Amber Alert in PA. But we should, for this exact situation! (BTW- the caretaker was fired you can read about it in the links above).

As a parent of 3 children I am outraged on Christina's behalf. I wonder if she had been a toddler or a prominent member of this city's society would the investigation be getting more attention? And if she didn't have autism?

Yes, as a parent I am outraged. But as a person, you and I should both be outraged. A resident of this city was missing and found dead while in the care of someone who should have protected her. What are we going to do about it?

What does it mean to you?

At my training they asked us to define Inclusion. Here's the definitions our class came up with:
  • Equality
  • Citizenship
  • Included
  • Belonging
  • All abilities (that was my answer)
  • No differences
  • Family & Community (supports)
  • Acceptance
  • Listen to your child, that's where the definition should come from- their wishes

According to DEC/NAEYC they define early childhood inclusion as:


Early childhood inclusion embodies the values, policies, and practices that support the right of
every infant and young child and his or her family, regardless of ability, to participate in a broad
range of activities and contexts as full members of families, communities, and society. The desired results of inclusive experiences for children with and without disabilities and their families include a
sense of belonging and membership, positive social relationships and friendships, and development
and learning to reach their full potential. The defining features of inclusion that can be used to identify high quality early childhood programs and services are access, participation, and supports.
 
 
Our Inclusion Journey has just begun. This is the first year that JD is in a "mainstream" class, he is in Pre-kindergarten. He attends with a therapeutic staff support and receives occupational therapy (for sensory coping & handwriting), special education instructor (to teach socialization), a behavioral specialist consultant (behavior plan to keep him on task). His class varies from 8 children and 2 staff to a combined 4-5 year old class of 21 kids, 4 staff. He tends to do better in the larger combined class to our shock. This year we've seen progress, a fair share of meltdowns, and also glimpses into where he will face challenges. He is so smart and gets frustrated when his friends do not always follow his thoughts. He knows his manners beautifully, he feels when he needs to calm down and asks for comfort or help to calm down. When he wants to, he follows directions nicely and he genuinely wants to please everyone with his good work. He enjoys playing with his classmates, he likes to badly tell knock knock jokes, and he likes to comfort his friends when they're sad. He's the first to go up to his teacher to tell him what he's learned. He's the first to teach his classmates some new discovery. He's so incredibly social despite the challenges we see and I am so incredibly proud of everything he does. He's such a great smart funny kid. He's simply who he is, my JD.
 
The journey so far has been full of learning lessons for us, his parents. All along our son really has been trying to tell us what he's been ready for and what he'd like to do. It was so hard to see him lose a language, to see the behaviors regress, and slowly to understand the diagnosis. The fear went away and although the hurt and anger still linger, seeing him flourish-- my son is teaching me so much on this journey.

While I am better at handling his behaviors and keeping him at an even keel, my husband is better at teaching him things and talking in JD's language. Those two just understand each other when it comes to learning. It's lovely to see how JD is building relationships to each person's strengths.
 
We started early education in a special education classroom at SPIN.He needed that nurturing and supportive environment to learn to speak, to learn to play with friends, to begin to self regulate emotions. Many other parents want inclusion from the beginning but I think we made the right decision for JD's needs. Plus, back then I knew nothing about advocating for his educational needs.  
 
My goal has always been to mainstream by kindergarten. But I was not sure if we'd make that a reality. And I'm still not sure, I still worry that we're pushing him too much. But I have to remember, just as he made his wishes known for every failed attempt at an organized sporting activity up to now, JD will surely let his wishes known in this environment too. Last spring, for example, my son's behavior regressed but the team made the decision that he was ready for "regular class" and his behavior was simply him telling us that he was bored and ready to be challenged. And so heart in my throat, we started out in regular pre-K. Sure we got expelled from the 1st school that claimed inclusion when all they really meant was "if they act normal enough" with little to no respect for a child's own development and challenges. But luckily, we found a new home where sure things aren't perfect, but they are open to make changes to JD's individual needs and have even incorporated things/activities into the regular curriculum so that my son doesn't feel singled out. 
 
So for me, inclusion means "all abilities, no differences, no pity or sympathy." It also, however, means that I can't push him to do things that I want him to do. I have to let him have some sense of autonomy and let him be a child. Autism doesn't change his ability to choose his likes and dislikes. As he grows, JD continues to show and teach me valuable lessons. He's making me be a better mom. He's teaching me how to be a JD expert. And if you have the joy of meeting my son, he'll teach you something about life too.
 


 

Monday, May 5, 2014

Inclusion-- Great Strides

I just came back from an early intervention parent advocacy training program. One of the discussions was about the history of early education and inclusion, especially in PA. It is difficult, sobering, and infuriating to listen to for anyone, but especially a mother of two children with disabilities.

It's hard for me to fathom that the Education for All Handicapped Children Act was only enacted in the mid 70s. It established LRE- Least Restrictive Environment. "In 1967, for example, state institutions were homes for almost 200,000 persons with significant disabilities. Many of these restrictive settings provided only minimal food, clothing, and shelter. Too often, persons with disabilities, such as Allan, were merely accommodated rather than assessed, educated, and rehabilitated." The 1986 amendments required states to provide services from birth-- hello early intervention! http://www2.ed.gov/policy/speced/leg/idea/history.html. So emotional to think that a generation ago, 2 decades ago, children did not have a right to public education. Families had no recourses publically funded prior to this other than institutions.

We live 10 minutes away from the site of where a mental health institution used to sit-- Byberry. Truly the most heinous hospital in our country. Founded in 1907, stories abound on the neglect, abuse, and down right torture and worse-- apathy to its patients. Stories of patients freezing on the grounds, gone missing. http://www.citypaper.net/article.php?What-did-we-learn-from-Byberry-15862  It was closed in 1990 and then spent many years an empty shell, a silent reminder of a shameful time where those with mental illnesses, epilepsy, down syndrome, autism, or anyone who didn't fit the norm was abandoned in these institutions. It is now the site for an over 50 years old retirement housing development. First it hurts my heart and then my blood pressure rises. Infuriating. Isn't it amazing how legislation and the public allow our children, somebody's child, those with disabilities turned into a mere number on the fiscal budget to be put away and ignored?

You know what this discussion has taught me? It's taught me that we should never go back, we should close the remaining institutions and move forward. Please God let's never more backward towards segregation & institutionalization. We have to keep all this progress, we have to keep all this momentum. Because if its this hard to advocate and receive services for our children NOW, when we have federal and state legislation protecting their rights, I can't imagine fighting without these regulations in place.

Incredibly thankful to the advocates, family, lobbyists, all those who are GOOD people, who understand that different does not mean less. 

My class is finished and I hope I can successfully advocate for my kids. I want to live in a world where my kids can all attend regular education and receive the regular curriculum just like anyone else. One day soon all of our schools will be truly inclusive where disabled and abled, where disabilities and abilities, are all educated in the SAME classroom.

What is INCLUSION--  http://community.fpg.unc.edu/connect-modules/resources/videos/foundations-of-inclusion-birth-to-five


RESOURCES
The Arc PA-- http://www.thearcpa.org/resources/historicaldocs.html
AAIDD- http://aaidd.org/
Handout on Inclusion-- http://community.fpg.unc.edu/connect-modules/resources/handouts/CONNECT-Handout-1-4.pdf/view

Thursday, May 1, 2014

Missing my friend



My friend passed away a year ago on Mother’s Day. We were co-workers and had our kids together. We were pregnant at the same time and shared many Mother’s 1sts together. She had such a great laugh and killer smile. She was feisty, compassionate, and a bit of a naughty mouth. We just clicked. I miss her still. Every time the kids do something funny or every time my oldest does something for the 1st time, I want to rush and tell her. I was talking to my hubby about it because I was feeling a little sad yesterday. I asked, do you think it will ever stop hurting so much? And why do I remember when she died so clearly and yet can't recall her birthday? I don't like dwelling on the days people die, I like to remember how they were alive and healthy. My hubby felt it was because it was on a special occasion day, even if it is what we like to call a Hallmark holiday.

 Now this isn’t my first rodeo with lost friends. I lost a friend my sophomore year in high school in a bike accident. DUI. He was a “boyfriend” or as much as one can be at a very sheltered 15. In college I lost my best friend, my dance partner, from leukemia. He had battled it for many years. I remember rushing to meet my hubby, then boyfriend, to just feel alive because his funeral was so very difficult for me. It took me a long time to get over that loss. With my friend Jess—uggh, it sucks, it’s not fair. 

Fing cancer SUCKS and I hate that she’s not here. I hate that she had no symptoms and was diagnosed at Stage 3 and then battled for close to 3 years before she passed away. I hate that those last years she was in pain and scared to death that she was leaving her little girl. As a mother, I can empathize and can only guess as to how painful knowing you were dying and leaving your children would feel. I admire her so much for never stopping the fight to live, and for living despite having  an advanced and aggressive cancer.  So Jess honey, I miss you. And I know you’re watching over Tori and your hubby. This mother’s day and probably every one for many years to come, I’ll light a candle and say a prayer. And if I find the time, maybe I’ll blast some dance music and do a little sexy girlie dance. Miss you sweetie. 

I also miss my best friend with whom we've been distanced for over a year. We disagreed and I was hurt. Perhaps we both acted too much like girls and emotionally crazy. And now life has taken over and we're distant. Sometimes life is like that though, people drift apart as their needs change. Sometimes its painful and other times you know its probably for the best. I'm still making up my mind which applies in this situation. It is hard to fix though when you're the only one seemingly making the effort. And I made myself a promise to never allow myself to be used again or be taken for granted and so I let status quo stay there.It's been a odd year. I've met and made new friends, other friendships have grown, and I guess that's just life. People come and go into our lives, some treasured, others learning experiences, and others lost way too soon. 

The lesson I want to teach my kids from all this-- make friends, appreciate them, and when you fight don't be afraid to think things over and apologize even when you're not in the wrong. Life is too short. Pick good friends and make time for that relationship.  

Monday, April 21, 2014

IEPs Oh My!



Earlier this month we had JD’s overdue annual IEP. Not a biggie, tweaking goals, adding a few, changing modifications. It is always a good feeling when you go into one of these and know you’re changing things because there has been progress! Plus we have a new service coordinator. I requested a change and I have only met her once before when we had my daughter’s IEP in February.
However, I don’t think I’ll ever be able to skip and giggle on my way to an IEP. I think I’ll always dread them. Uggh, I just get such a bad feeling even thinking about the meeting. It’s not that I expect to fight for everything—oh wait yes, yes I do. But I may be biased because of previous experiences with unnamed service coordinators at unnamed 3-5 service providers. But I digress.

This is how I get ready for an IEP meeting. I don’t propose that this is the best method or that you should do it. Hell maybe I’m doing it completely wrong. You have to remember I’ve only been doing IEPs since late 2010.  My method has evolved from just showing up and saying “well that sounds good, ok then,” to bring in “the binder”. So here goes.

My Binder contains:

  • ·         Questions for the team
  • ·         Printed emails with progress reports from the current team
  • ·         Drafted IEP goals (new/edited revisions to existing goals) in SMART goal format. (Putting that MBA to good use there, LOL).
  • ·         Current IEP with my highlights and notes
  • ·         Private evaluations or progress notes from private therapists or specialists. (To prove my point and get the services we need)
  • ·         Previous IEPs, previous evaluations and diagnosis. (Best to be prepared. You never know when you’ll need to pull something out to say, See you agreed to it right here! Or See this is educationally necessary).
  • ·         Sticky notes, sticky flags, highlighters, whole puncher and paper clips, pencils and a pen.
  • ·         My schedule book
  • ·         My cell phone (for the contact info)


Then I put on what I call my fight face. I used to dress up in business casual and makeup etc. Now I draw the line at sweatpants. So I settle for jeans and a clean shirt. Maybe brush my hair before I pull it back. If I am asking for services that I know I’ll have to fight for, a friend comes with me or in 2 occasions I brought an advocate with me. When things went from bad to hell, I brought an attorney that we're still paying for.
If you’re new to IEP land, google and facebook are your new best friend.  Our special needs community is so awesome because we share resources, knowledge and best practices like no one else. Reach out to your local inter agency council, parent support groups, and advocacy agencies to get help. Also, most of the major universities have departments that can help. Or if you're in PA- call Parent to Parent PA or Parent Partners (if you are in Philadelphia and deal with Elwyn). There is help available out there, google! IEPs are a bear and why start from scratch when someone bigger and more bad ass then you and I has paved the way before us? Good night all!

My best advice to you-- DONT SIGN THE NO REP AT THE MEETING. Ask to get a final copy in the mail/email. That way you can read the entire document before you sign. You are signing a legal document. Do you really want to speed read in 5 minutes? Think about it.

Good luck in your IEP meeting. 

Parent to PArent of PA-  http://www.parenttoparent.org/
Parent Partners 215 921 7169 
Philly Autism  http://phillyautism.webs.com/
PICC- http://philadelphiaicc.org/