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.

 





 

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.