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.

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!

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.

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.

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.