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.

 





 

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

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 1^st 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.  

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/

A day in the life of

A day in the life of. . .

We’re usually up by 7:30 to be ready and out of the house by 9. The only morning person is my Cemily baby girl. She wakes up and is wide awake and ready to go. The other 2 and me are slow going and grumpy.  JD & I had to cut off our morning cuddles early today. We’re both rather tired because from 2-4 kiddo was up in his room with me. So there we are: I speed dress myself, get breakfast going, wake the twins up, change diapers and potty. In between yell down reminders to JD to eat and how much time he’s got left. The girls wanted PJ day. Fine, we’re late so that’ll save us time. Brush teeth, diapers changed, socks on and I load up their ziplock baggies for cheerios on the go. JD isn’t done breakfast so it’s pancakes in ziplock baggy for breakfast on the go. I throw them all in the minivan (not literally, c’mon people), double check everyone is strapped in and we’ve got everything we need. Off we go to school. TSS texts she’s running 10 minutes late, okey dokey.No biggie, guaranteed we're running late too. 

Do the preK drop off routine—unload the mom mobile, fight with JD over breakfast in the cafeteria. He hates the cafeteria. I don’t blame him, it’s crazy loud in there. Leave him doing the noodle twist on the floor with his teacher, heart in my throat. Hoping and praying he'll be ok and that we don't get kicked out of this prek too. Dude, that's the reality, that's exactly what I fear everyday. Take a deep breath, wrestle the tots into their car seats. Feel like I’m ready for a drink or a nap and off we go back home. 

Rush back home. Girls decide their breakfast and we’re watching some Dora while I reheat my tea in the microwave for the 3^rd time. I sip my lukewarm tea standing by the kitchen until someone starts crying. Sigh. Oh crap, I just remembered I left a load in the washing machine. And I better reload the dishwasher. Sigh.

While the girls are eating, I rush upstairs, do beds and clean the bathroom (5 year old newly potty trained boy he misses A LOT). Come downstairs and want to cry over the mess in the kitchen. Tackle that in between speech therapy and some coloring. I need to sweep again. Get interrupted a lot to dress their babies, their mommies, and to do ballet dance class with them. Fine, we’ll do all that. So girls are watching Nic Jr.while I’m cleaning up the dvds and I find an exercise dvd that I meant to try and have never done.

I go get changed and wrestle the girls while trying to do 30 minutes of cardio. I don’t know if it’s the dvd or fighting with the girls but Goodness I worked up a sweat! But sadly I don’t feel refreshed—why? Because the girls have made me grumpy and miserable the last 30 minutes because they want to watch cartoons.  Little Snots. 

Mad rush through shower, I may still have shampoo in my hair but it’s all good. We get home and our TSS is waiting. The kids rush into the house, sneakers go whichever way, coats go flying, backpack needs to be checked, lunch box needs to be cleaned, girls need to eat lunch. I remind loudly that coats get hung and sneakers go in their bins but somehow everyone ignores me. So I get louder and suddenly its clear I mean business. In between we work on speech and some sensory activities. Work on JD’s FBA at home to see how he’s doing is he tracking progress etc?

She's gone and I take 5 minutes to check emails, request an IEP quarterly, send some texts to get progress reports from his therapists. Crap, what are we eating for dinner? It’s quarter to 6. I spent 10 minutes talking to my aunt for her belated birthday call & I gave the kids popsicles. Yup, total bribe so I could call my aunt. Ok positive incentive. Whatever, you get the deal. I found Apple D upstairs making a lagoon in the bathroom sink. She smiles and says: "Wash hands!" Uh huh. Cemily is in the living room playing in juice box puddles "Drink mommy?" uh huh. JD is calmly playing with his legos and a melted popsicle. Buddy why? "Huh?" is his reply. Yeah he forgot he had a popsicle. Sigh.. This is why I never call anyone.

I’m ready for bedtime. But I’ve got an 1 hour of zumba tonight and I need to get baths and pjs done. But wah we’re still fighting over dinner here. I have weird kids. They’re refusing mac n cheese. What kid doesn’t eat mac n cheese? Mine, that’s whos. Sigh. Gotta run, JD needs a calming hug. Oh and tomorrow? I get to do this crazy life all over again except tomorrow we’ve got 1 hour private therapies and a 20 minute drive to and fro on I-95.Its all good. It's just life. Exhausted!! And the house looks like a wreck even though I swept 3 times and cleaned the bathroom twice. Oh well.

Striving for Normal

Six years ago the worry and stress were about work related things, simpler things. This stress of striving for normal is about my children and their future. Failure, lack of progress means they might not be able to live alone or unassisted or she might never be able to have a conversation without software or sign language.

My goal,  my dream is to see all of my kids living "normal" lives, in whatever sense that may be possible. JD living an independent meaningful and purposeful life where he is happy and thrives. Apple girl talking to friends without assistance. Cemily baby happy and a part of the trio. I don't want her to feel marginalized. I don't want her to be resentful. Simple goals, and yet so much hard work on their part to accomplish them. I don't know what the future holds, I don't know if I'm being realistic. I have accepted that I can't "fix" them, and that hurts too. But my job remains unchanged, I need to help push them along to "normal" and try to "fix" the problem as much as possible. Not a day goes by where I didn't wish I had the magic cure. Our lives would be completely different then wouldn't it?

You have to know where you're going in order to know what you're fighting for. For me, my journey-- its to hold their hands and guide them towards "normalcy" as much as they are able and willing to. 
As they get older, my job will be to support and offer guidance, and its also going to be to know when to shut my mouth and let them live their lives without judgment. I think that's when it'll be difficult for me. I like to be in control and well you can't control kids. Then again, you can't control the future either. It's all a part of life and hoping for the best.

Let's say we never get to "normal", life will keep on moving, we'll just adjust our goals and keep on taking it one day at a time. Nothing else to do right?  I think the fun and happiness in life are in learning to recognize the good stuff in the midst of all the bad stuff. It is a joy to see the happy silly stuff in our daily lives when I join JD in his view of the world. When I sit and have a conversation with my girls, in a 2 year old level-- its really hysterical. I am so proud to be their mom. They are my joy, my everything. It is at those times when I realize, I'm striving for "normal" but for us this is normal. This is our life and I can't ever forget that I need to enjoy each moment I have with them. It is going by so fast.