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.