Willowbrook

Willowbrook.....

So tired.... Wonder Boy not sleeping... how am I going to get through the day tomorrow... I have some help, thank God, but so many years of sleep issues, behavior concerns, therapies, learning, understanding, caregiving, I understand why some might consider a residential facility for their children.  That being said, we can never forget what happens when we choose to ignore realities because we have whatever difficulties coming to terms with what it will take to do the right thing... I will be keeping an eye on what happens to NYS OPWDD budgets after this COVID crisis pulls back... my short video from tonight... but please consider watching the 2nd video, of the Geraldo Rivera 1972 expose on the inhumane treatment kids like my beautiful boy ZMan had to endure due to budget constraints and cutbacks...

1st Communion: He Did It

Two things made me happy today. No it wasn't the fact that my second born with profound disabilities made his First Communion. No it wasn't that the menu I prepared came out amazing, and that's good because that delectable tenderloin is some expensive stuff.  The things that made me laugh was that my son ripped one during his First Communion service (the unwieldy toddlers behind us masked the thunder, yeah for noisy kids!) and upon receiving the consecrated host at this most sacred of events, asked for seconds.  No kidding.  We still need to talk to Father Peter about that one - I think he was baffled at Zach's muddy verbal request ("More,please") and his gesture, Zach has his own sign for "I want" that anyone who works with him knows: repeatedly pinching is index finger and thumb together.

This event for Zach was more than making me happy. It gave me so much peace. To those who would like to pursue this sacrament for their own child, I encourage you to reach out, and reach out again (it may take a few tries) and do what it takes (Zach is fairly complex so we didn't drop him off and say good luck - we got personally involved, we were the aide). It can happen. It has happened for others. To me this went beyond tradition. For my atheistic/agnostic friends, who are already cringing at this post, I can only say that this sacrament feels so sacred to me - that it puts Zach in a different spiritual place, that it might even change his course.

Please don't credit me with anything more than the decision to try. To the parents who went before me and did it, thank you for giving us confidence to know it was possible. For those who encouraged us to try, thank you, I needed that push. For his Godparents, who showed their pride and support for belonging to him and his faith journey, you are not just a title, you are the real thing. For the staff that made it happen, thank you for the amazing gift. For the Church, Blessed Sacrament Church, who opens the doors for us and others, you are a blessing. To my husband, who knew that I wanted this so deep in my heart, who put in hours of his own time to attend every class, every practice, work with the staff on teaching them who Zach is, do the homework, practice, practice, practice on top of all the other things he does for us, I say you are unequivocally an amazing man even if yesterday I did call you a jerk under my breath... 2 times. And to God who gave us all these amazing people who love us just as Jesus intended, I have had my doubts, but these people you sent to us have renewed my faith. To Zach, I wish you the peace within your soul that this sacrament was intended to offer, and I hope that if not now, maybe one day, you will realize that you brought out the best in a lot of people. 

Peace

What is this Puzzle Piece about anyway?

I was recently asked what the meaning behind the necklace that I made is.

The necklace in question is this: (And they are for sale - $8 plus S&H )

Historically, the puzzle piece was the logo embraced in 1963 by the British organization now referred to as the National Autistic Society. The original logo included an image of a weeping child in the center.

 

  

The group described this logo as: “The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

Some may find this description very offensive – but contextually I think it is very understandable. At this point when this logo was derived, autism was still not a diagnosis – many of those who had autism were diagnosed as schizophrenic and even more interesting, a very popular theory of “refrigerator mothers” was the prevalent thinking of causation. (Like those poor mothers didn't have enough to worry about! To be blamed on top of it! Ugh) But I digress...

For many of us parents, I think the symbol makes sense – from our perspectives this disorder certainly is complex and varied, with a lot more mystery than clarity.  Again – this is from the parent perspective.  The variance amongst the population with diagnosis is represented by the colors within the puzzle piece. Autism crosses nearly every demographic equally – race, color, creed, country, socio, economic … all but one: gender. Autism prevalence is 4x higher in boys than in girls.  (NOTE: the two colors of blue used are traditionally male associated.)  But the spectrum is just that, unpredictable and varied, at times beautiful with a side of rain – and the colors could represent that as well – autism may make one quirky and skillful or it could make someone speechless and seriously aggravated and every combination in between. 

One day, I hope future generations will look back and laugh – at the fact that we found autism complicated and unknowable, and difficult. We have a lot of work to get there. For now, I can only ask for your understanding and your awareness. I appreciate anyone who is willing to symbolically show that.  When a parent sees this symbol, as they do a knowing smile of support when a child has troubling behavior, it makes them feel less alone. And that means the person they are supporting with autism gets the benefit of a parent who feels encouraged. And I personally know how important encouragement is when sometimes I feel not up for the challenges autism makes me face. So thank you for asking and for willing to wear my simple necklace!

Girl Scout Cookies!!! + 4th Annual Cookies for Food Pantries Drive!

It's That Time Again:

Girl Scout Cookies for Sale!   

Sophia is making a request...
She is selling Girl Scout cookies - if you would like to place an order - please send an email to her mom at leanne.morphet@gmail.com and tell us how many of which type you would like. You can also reach us by phone at 446-1970 (Cookies are $4/box)  Gluten Free Toffee Tastic $5

                          

Sophie has a Goal: DONATIONS

For 3 years in a row, Sophie has been overwhelmed with the generosity of our community, friends and family. Not just because she met her goal of 250 boxes sold - but we were surprised to have nearly 300 boxes to donate to local food pantries. Sophie is hoping to get 100 donated this year. Can you help?

                       2013                                                     2014                                             2015

Sophie and her Donations Collected to St. Lucy’s, Holy Family and St. Joseph’s Food Pantries

One Donation Two Causes
Also - if you don't want the cookies - but want to donate anyhow, we are taking cookie orders and delivering them to a local food bank for distribution - help two causes at once! Please make note when ordering.

Allergies/Intolerances/Nutrition Info
If you need nutritional and allergen information about the cookies that can be found by going to:

http://www.littlebrowniebakers.com/cookies/

Cookies will be in at the end of March – Thank You!!!

Camillus NYPENN Troop 026