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

 I am Woman http://youtu.be/ZBkoJLclZkk

 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

Rude by Magic! http://youtu.be/PIh2xe4jnpk

I Wanna Be Sedated by The Ramones http://youtu.be/lQeo3OfuEDM

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.

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.

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.

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.

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.