ANGELS AMONGST US

Yesterday, I had the boys' annual CPSE meeting. For those of you who do not have a young child with special needs, that is the Committee on Pre-School Education. Every year, while you parents of "typical" kids are deciding whether and what preschool to send your 3- and 4-year-olds, us parents of kids with special needs are meeting with a 5+ person committee to decide the same thing. That's right, I don't get to pick and send, I get to review evaluations covering every aspect of my child's development with strangers, then decide as a group what's best for my boys.

It's actually not as bad as it sounds in some ways... But, worse than it sounds in others.

How well I know and how much like and/or agree with the other Committee members and their general attitude is directly correlated with the level of stress these meetings reek on me, the parent. That is in addition to the stress of reducing my child to a black-and-white, numerical representation in the form of a 10+ page report for examination by all these folks. That's always hard!

Participants may include the CPSE Committee Chairperson; an educator from my home school district; one or more representatives from my county; representatives from the boys' current/intended preschool; current therapists -- OT, PT, Speech, Social Worker, live or on the phone; current teacher(s); a "parent member" (another parent who's been through this process and wants to help you navigate through the maze); and, of course, me (Mom) and maybe Dad if he can get off from work that day. Luckily, I am comfortable with my Committee Chairperson and with the boys' preschool teacher. For me, while the time leading up to these meetings is always stressful (as previously noted), the meetings have been pretty agreeable despite some tough topics, questions and/or suggestions. That said, yesterday's meeting held a very pleasant surprise for me. The county representative -- generally an unknown entity -- was an active participant and had a very positive influence on the discussion and outcome.

Herb -- his last name has been omitted to maintain anonymity just in case the county would rather their rep not actually involve himself personally -- was an upbeat guy and pleasant conversationalist. But, that's not what impressed me the most. First, Herb took the time to put a face with the names on the reports, asking to see pictures of my boys early in the meeting. I realized then that Brian and Michael were not just another statistic to this man. Second, he was the only one who actually keyed in on me... my wants, needs and expectations. When a disagreeable [to me] suggestion was made, it was Herb who noticed and spoke up saying, "Wow! This has been a really pleasant meeting thus far but did you notice how Mom's body language just changed when you made that suggestion?" He was right on target too. I appreciated his noticing and speaking up. The suggestion: that my identical twin sons who happen to have Down syndrome be split up into two separate classrooms for their 4-year-old preschool experience. While the school reps gave their reasons and I offered my immediate reaction (which was contrary to the suggestion -- though I agreed to take it under consideration), it was Herb who had the wherewithal to add his professional opinion cautioning the school representatives that it was the parent's decision and that part of their reasoning -- allowing the boys to develop independent of each other -- does not address the potential trauma that could be inflicted if they split up strongly-bonded, special needs twins cold turkey. He explained that IF this was to happen, with my agreement, it would have to be a very gradual process separating them for one hour a day and slowly increasing that eventually to a full day in separate classrooms to ensure that no psychological damage resulted from the action.

I was so impressed with his personal involvement and championing in favor of my boys' well-being that I am naming Herb, the CPSE County Rep, my Angel Amongst Us for this week. May I add that I found his behavior to be extraordinary as I have been exposed to a number of individuals who have been involved with my boys long-term but who have shown less interest in their development than this virtual stranger did!

Thanks Herb! You were right! It was a wonderful and pleasant CPSE meeting yesterday... Thanks to you!

THANKFUL THURSDAY - On Friday

[1] Boy am I thankful blogging isn't a paying gig. Otherwise, I'd be broke. At least when I don't post I don't get docked any pay! Sorry for the absence but it's been "one of those" weeks.

[2] I'm thankful that my Aunt Dolly's memory loss is "not serious" per Psych-MD we met with today at the Neuwirth Memory Disorder Clinic at Hillside Hospital (part of North Shore-LIJ). We'll be working to get to the cause but for now, he's certain she won't be wandering down to the corner at midnight in her nightgown or not remembering her name. This is a huge relief to everyone... but most especially for her.

[3] I'm thankful that the yesterday's CPSE meeting to determine how we will educate the boys for the 2009-2010 school year is over and that the outcome is exactly what everyone wanted. The boys will be attending BCCS at Marcus Avenue again next year. Participating in the 4-year-old program in an integrated classroom just like they have now. Sure there was one little surprise. I was also presented with the idea that maybe the boys should be split up into two different classrooms next September for reasons I don't necessarily agree with but won't go into in this post (maybe later). Fortunately, it didn't need to be decided right then and there so I agreed to take it under consideration. Which means I'll investigate, research, get 2nd, 3rd and 4th opinions and get back to the group before the end of this school year.

[4] BUT, MOST, MOST, MOST of all, I am absolutely, incredibly thankful that my nephew [and his mother and father] got through his heart surgery without a hitch this week. All went well. "He was never in any danger during the procedure." And, they believe they found and eradicated the problem and he's home and on the mend even as we speak. Welcome home Jimmy!

[5] I'm thankful for today's amazing medical technology. Not all that long ago, my nephew's tachycardia would have been monitored with no way to actually fix the problem except through open-heart surgery. Today, medical technology is so advanced that they can correct his heart problems without ever touching a scalpel to his flesh. Who would have thought that yesterday's video-game-playing kids would be grow up to become today's expert laser surgeons. So, there's one upside to the whole video game generation!

ANGELS AMONGST US

Last year when I began the process of transitioning from Early Intervention to CPSE (Committee on Preschool Education), I was told by the CPSE Assistant Chairperson to see this not as a meeting to make a decision about my boys' education but as an on-going process in educating my boys... A process that would continue for the next 18 years. Each time we prepare to reconvene the committee, my stress levels increase with all the unanswered questions and worry that I may not be doing the best, educationally, for my children. I know that I am not alone with this worry and stress. Every parent of a child with special needs experiences this. It's just that I'm relatively new to it. So, I haven't quite become accustomed to it yet.

My previous post (http://walkonthehappyside.blogspot.com/2009/02/kindergarten-by-6.html) discussed an epiphany I recently had regarding Brian's and Michael's education. A single phone call from Dr. Kathleen Feeley, an expert in the field of educating children with special needs -- specifically Autism and Down syndrome -- served to relieve about 80% of the stress I've been feeling related to the pending educational decisions I have to make on the boys' behalf. Dr. Feeley voluntarily took the time from her busy schedule to reach out to me -- a parent she'd met only once -- to talk about educating children with DS and about my advocacy efforts on behalf of people with Down syndrome. It was a most informative conversation which drastically changed my thinking with regards to how I will move forward with the boys' education in the near future.

I recognize Dr. Feeley's effort as extraordinary. In her single act of kindness, there is reward on both sides. I imagine reaching out to me made her feel good knowing that she helped me understand a little bit more about what lies ahead for me and my boys. She's paying it forward. And, for the record, Dr. Feeley has committed her life to such altruistic pursuits. She is also a professor in the autism program at LIU/CW Post, involved with DSAF, the Down Syndrome Advocacy Foundation (http://www.dsafonline.org), and has been active in creating Down syndrome support groups, as well as DS advocacy and research efforts on Long Island. As such, she is helping many children with Down syndrome and many parents of children with Down syndrome... Including me and my boys. So, many thanks to Dr. Kathleen Feeley -- truly an Angel Amongst Us.

"Kindergarten By 6"

I recently had the honor of speaking with Dr. Kathleen Feeley, an expert in the field of educating children with special needs. Specifically, her expertise lies in the areas of Autism and Down syndrome. For much of our conversation, we were discussing the practice of mainstreaming and inclusion. Involved in the Down Syndrome Advocacy Foundation http://www.dsafonline.org/), she informed me that their recommendation was to have children with Down syndrome attend kindergarten by the age of six. I was a bit surprised by this, and so relayed to her a conversation I had with the "immediate past president of SEPTA" in my town. Without ever meeting my boys or even inquiring about their level of functionality, this person told me that my boys would spend at least 2 years in kindergarten. She automatically assumed that my children would require at least that educational assistance. To be honest, I was a bit taken aback... offended... unimpressed... angry... and a few other emotions I won't go into. I mean, who was she to dictate what my children would or would not need educationally? She'd never even met them! Interestingly, Dr. Feeley had nearly the same message but explained things differently.

By law, our special needs children are entitled to a free and equal education up to the age of 21 years. In the grand scheme of education, mastery of primary skills -- language, the alphabet, numbers, reading and writing -- is critical to move on to bigger and more complex skills and concepts. That said, Dr. Feeley suggested that rather than packing on all those extra years of learning (as needed) on the end of our children's educational careers, parents should consider putting at least one of those "extra" years up front in pre-school so that these critical primary skills -- the building blocks that all education rests upon -- provide a stronger foundation upon which to build all future knowledge.

I totally buy into this premise! (Did you see the light bulb go on?)

I have always been open-minded about a child repeating any grade as necessary according to their needs. Admittedly, I've also been hopeful that this might not be necessary given my boys' consistent performance in the borderline delayed range. I have lauded parents who had their academically struggling "typical" children repeat a grade at a young age to help ease the child's burden and boost critical skills early on. So why would I be less willing to do so for my special needs children? The notion that I would push them forward when they are performing in the borderline delayed range just to keep them with their same-age peers is absurd. But, that is how I was thinking... I guess.

After speaking with Dr. Feeley, I've concluded that it would be most beneficial for my boys to repeat at least another year of pre-school to ensure the building blocks of all subsequent learning are strong. I'm not sure of the significance of repeating 3-year-old pre-K when they're 4 or 4-year-old Pre-K when they're 5. That has yet to be determined. But, I suddenly find myself committed to the logic of the "Kindergarten by 6" concept. Easing Brian's and Michael's burden, giving them that extra time to strengthen core skills by repeating, is a phenomenal idea. I don't know why I hadn't thought of it! Perhaps I was so caught up in keeping up that I neglected to think about my sons' individual learning curves, educational achievements and needs.

Truly, my conversation with Dr. Kathleen Feeley was an eye-opening experience and one that has eased my mind with regards to the educational decisions I face in the very near future for Brian and Michael. As a matter of fact, the immense stress-relief she provided by calling and having that conversation with me, absolutely makes her my Angel Amongst Us for this week.... But, that's another post!

THANKFUL THURSDAY

It's day 6 of a 9-day school vacation and I'm still standing. That's a good thing. Actually, I really like having the kids home from school. But, figuring out play dates in between doctor and vet appointments isn't all that fun. Still, we're managing to fit in some fun stuff... So here goes:

[1] I'm thankful for my membership to the Wildlife Conservation Society (http://www.wcs.org/) so that I can go to the Bronx Zoo, Prospect Park Zoo, Queens Zoo, Central Park Zoo AND the NY Aquarium as many times as I want for the $120 annual membership fee (parking tickets included). THAT'S a HUGE deal. As such, I was able to take my kids and one of the old soul's friends to the Aquarium today for just the cost of lunch. What a great and easy play date!

[2] I'm SO proud of [and thankful for] my kids. Brian and Michael started out in the stroller but I told them that I'd let them out if they stayed with me and followed Olivia. They all did beautifully. The boys followed their sister and she attended to them as needed. Only once did I have to remind the boys not to run off but to stay with their sister and her friend. They moved from window to window and tank to tank, oohing and aahing at the sharks, turtles, seals and walruses like big little men. And, when I told them it was time to get back in the stroller, they hopped in without any protest. It doesn't get better than that!

[3] I'm thankful for my children's gentle and courteous personalities and naturally good manners. I had the recent displeasure of spending time with a mildly rude child who knows me well enough to know my name. Still, the child said to me, "Hey you, can ya do this for me?" To which I promptly replied, "Hey you? My name is Maggie." And, the child answered, "Whatever!" Hmmm.... Well, I do live in New York!

[4] I'm thankful for the underlying hints of green sprouting through the dormant winter grass in my backyard. It's coming, I know it!!!! Spring is peeking around every corner. It was a sunny and glorious 54 degrees today. YEAH! (Down to 18 again tonight!)

[5] I'm thankful for my gentle soul of a husband. I didn't know that he had accepted an invitation to a hockey game tonight. (I knew he was invited. He told me that. But, he never said he was going. Even insinuated he wasn't. As such, I assumed he wasn't going because I'd just sent him to a hockey game on Monday for a Valentines Day date with the old soul .) When I calmly expressed my disappointment about not knowing in advance, there was no fight, no loud voices, no anger between us. He merely explained how it came to be and then sat with me and the kids -- fully engaged -- until it was time for him to leave. Sure I'm sorry he's not here... But, I'm very thankful I don't have one of those fighting, yelling, disagreeable or completely absent husbands.

To tell you the truth, this peaceful life we're living here makes me pretty happy.

Take Time to Smell the Roses

Preventing unhappiness from seeping into your life is just as important as specifically inviting happiness in. Focusing on the good helps us get through the bad. [My] Happiness Guru, Gretchen Rubin of http://happiness-project.com/ says, "Keying into these tiny pleasures gives you a lift even on a happy day. And being in the habit of noticing them can also act as a buffer when you’re feeling blue or angry. One concrete cause of unhappiness is rumination. Studies show that by dwelling on irritating feelings and episodes, you amplify their power in your mind. Taking a moment to distract yourself from bad feelings can help alleviate them."

There are times when happy thoughts are fleeting while irritating or disturbing thoughts just seem to hang on or, worse, take on a life of their own. Unfortunately, this week has been one of those weeks with an unwell, elderly parent (and aunt) raising painful issues for me and my siblings. Sure I had random happy thoughts all week. But, as I said they were fleeting, by my standards, and sadly, they were snubbed out without getting their fair share of my undivided attention. Staying focused on problems I can't solve simply serves to make me unhappy.

Yes, my 77-year-old Dad is not well these days. Yes, his memory is failing (especially when he's ill and won't take medications to help himself). Yes, he's very antagonistic, sarcastic, bitter and downright impossible to talk to when he's like this. And, finally, yes, my sister who lives with him is between a rock and a hard place and I'm terribly sorry for her situation. I wish I could help more. But, no amount of rumination on my part changes any of this. Rather, it merely serves to make me unhappy. That's not to say I cannot take some action. I did! I spoke with my sister and discussed the reality of the situation and potential solutions. And, I visited with my father to strongly encourage him to take the medications at hand. I even used my "old soul" to guilt him into treatment, "don't you want to see me and my broeys grow up?" I'm not sure it helped my Dad or my sister much but it's all I could do so I did it. Now, I should stop ruminating, right?

Most of us have heard the expression, "Stop playing old tapes". That is, reviewing or reliving unproductive and aggravating conversations and/or scenarios over and over again in our heads and in our lives with no different or positive outcome. Another version of this is, "If you always do what you've always done, you'll always get what you always got!" Most often, the habit of ruminating, complaining, or bit**ing-and-moaning -- call it what you wish -- all result in personal dissatisfaction without solving the problem. I'm not saying that you shouldn't think on a problem or seek other opinions in reasonable measure to find alternate solutions. Or, that you shouldn't take action where you can and should. But, dwelling on a difficult situation doesn't solve the problem and could very well create problems including unhappiness, resentment or depression.... Never good!

So, what should I do when negative ruminating overtakes my more positive thoughts? Admittedly, it's easy to say but not so easy to do at times-- especially when a negative situation is taking center stage. But, the answer lies in creating and then mindfully attending to those moments and things that bring me happiness. For me, that mostly means spending more focused leisure time with my kids and in nature. All the better if I can combine the two. It's as simple as a walk in the woods, a trip to the beach (any time of day or year), or an hour at the playground... with the kids, of course! For one of my sisters, gardening and concert tickets can do the trick. For my Mom and another sister, spiritual pursuits work well. For others, cooking, participating in sports, gathering with friends, exercising, or reading a good book will work. The real trick is to know what puts the wind in your sails, then purposefully plan it, pursue it and be mindful of it when you're in it.

There's a bunch of generic ways to say this but I think the most apropos, with Spring just around the corner (another happy thought) is, "Take time to smell the roses!" Of course, to smell the roses, you either have to plant some -- if you're into gardening -- or get thee to where the roses grow. THAT'S what I'm talking about.

DIAGNOSIS 911

After 3 days of intense testing, a friend of mine received a diagnosis for her young son's developmental delays. PDD-NOS! Now, if you're the parent of a child with special needs, you may [think you] know what this means. The abbreviation stands for Pervasive Developmental Disorder-Non-Specific [Reason/Origin]. If you take it literally, it's not a big deal because you wouldn't have had your child evaluated if you didn't recognize developmental delays. However, what the diagnosis has come to mean in the "real" world is the early identification of Autism/Autism Spectrum disorder. For many, that's a dreaded thought. As it was, initially, for my friend. However, after the initial emotional reaction followed by 24-hours of logical thought... she came to the only conclusion that matters:

Her son is still EXACTLY who he was before this "dreaded" diagnosis was applied to him. NOTHING -- not even those 6 letters -- can change who he is or what he is or isn't capable of... And, no one can predict the limitations of another. Don't let anyone tell you otherwise.

What is a diagnosis? Webster says it is, "the art or act of identifying a disease from its signs and symptoms". An ART! Psychology is an art that uses scientific methodology. It is generally not black and white but rather can be VERY grey at times! Note that having identical twin sons with Down syndrome, I recognize that very black and white science was used in identifying their disease. That is, the extra chromosome is either there or it is not. In their case it is and their diagnosis of Down syndrome is a scientific, black and white, diagnosis! However, what they can achieve in their lives is not black and white and cannot be accurately predicted by their diagnosis. This has been proven historically, as we have seen great strides and progress in the achievements of people with DS with greater acceptance into society and the advent of early intervention and special education.

Obtaining a diagnosis through behavioral observation and psychological analysis -- despite using scientific methods -- is NOT black and white. (FYI - My undergraduate degree is in Psychology, Psychology for Exceptional Children, and Art.) A set of symptoms -- read: physical and cognitive behavior -- can be misread and, potentially, misdiagnosed. I'm not insinuating that you should deny the diagnosis because you don't want "that" disease. The diagnosis assigned will most accurately reflect the set of behaviors that are being observed by the psychologist at the time of evaluation/examination. Still, knowing how one comes to a diagnosis is important to consider. My boy's diagnosis is 100% scientific based on the presence of an identifiable genetic condition. My friend's son's diagnosis is in the grey area -- using scientific methods to observe and analyze behavior. In either case, the diagnosis STILL cannot necessarily accurately predict the outcome.

So, what's the point of a diagnosis then? Well, in both of these cases, a diagnosis identifies a set of symptoms -- behavioral and/or physical -- that allows us to obtain services to address these specific symptoms. My boys' diagnosis qualifies them to receive physical therapy, occupational therapy, speech therapy and special education according to their specific needs in these areas. My friend's son's diagnosis allows her to obtain services such as socialization therapy, ABA educational services and others that might otherwise have been denied, to help address his specific behavioral symptoms. A diagnosis is an incredibly good and necessary thing when dealing with government agencies responsible for doling out services to hundreds of thousands of children with various types and levels of special needs. Bottom line, a diagnosis is not something to avoid or fear. It does not change who your child is but may change how readily you are given services to assist with your child's development.

USE the diagnosis to get what you need and, as necessary, to help you understand your child's development or behavior. But, discard it as a label for your child. The only LABEL I need, want or will allow for my children are their given names. They are NOT "Downs kids" as so many people refer to them and others with DS (and I feel compelled to politely correct)! They are Brian and Michael. Their DIAGNOSIS identifies a set of symptoms and their genetic condition. Their names represent WHO THEY ARE. And, no one -- not the scientists that diagnosed my sons' DS or the psychologists that diagnosed PDD-NOS for my friend's son -- can know what their future holds or what they are capable of achieving.

Do not let a diagnosis cloud the way you, or others, see your child! While you should use your diagnosis to proactively obtain the specific services and whatever help your child needs to develop to his fullest potential... Most importantly, stay focused and BELIEVE in the individual strengths and characteristics that make your child who he is.

THANKFUL THURSDAY

It's late but it's still Thursday! And, as I sit here, baby monitor affording me audio confirmation that my children are all sound asleep... for now (as is my husband), I am reminded of just how lucky I am!

[1] This evening I took great pleasure in a few minutes of pure, uninterrupted rough-housing and horse play with my boys. There is no better sound in the world than the sound of my children's laughter. I am so thankful for that sound. I believe there's magic in that sound... like the sound of the bell ringing in Polar Express. May I always be mindful of their beautiful laughter.

[2] I'm thankful that my husband is such a talented DIYer that we now have a custom-built-out closet in our playroom/office so that we can finally put away some of these toy bins that have lined the nooks and crannies of our formerly closet-less home. (I guess in 1824 when our cottage was built, folks only had 2 outfits -- their work clothes and their Sunday clothes -- so a closet was unnecessary when 2 hooks would do the trick.) That said...

[3] I'm glad I have not only the clothes on my back but that I could fill a big closet (if I had a closet, that is) with the clothes I have. And, even though most of my wardrobe is a bit older (and doesn't fit me because I gained too much weight), it's important to appreciate what I've got when there are so many people in this world who have so much less. Truly, I am blessed... And, I need to share that blessing by passing on the clothes I'm not wearing to folks less fortunate than me. Speaking of passing on clothes...

[4] I'm incredibly thankful to all those people who have passed on their children's beautiful hand-me-down clothes for my kids. Not just because it saves me a ton of money I don't have to spend on new clothes... But, because it makes complete sense to share clothes as children outgrow them so quickly they don't even get a chance to ruin most things. I am a big believer in recycling and I am an avid kids-clothing recycler. I call it "the sisterhood of the traveling pants" but it's really just another way to pay it forward!

[5] I'm thankful that Weight Watchers exists to help people like me re-develop healthier eating habits and re-achieve and maintain healthier weights. I did it once and I can do it again. With the support of my friend, Wendy, I start tomorrow at 9:30 AM with a weigh-in and meeting. I'm hoping to drop enough weight to fit into some of those clothes I have that are not hanging in the closets I don't have in my house. Wish me luck! (You'll know I succeeded if you see me wearing that outdated, lime-green, mini-skirt suit I absolutely LOVED in 1990 -- LOL!)