The Little Drummer Boy (this version in particular) was Alejandro’s favorite song this Christmas and holiday season. Well this song and the one that, in his words: “says my name.” Translation: Alejandro by Lady Gaga. I’m 100% certain that The Little Drummer Boy and Lady Gaga don’t exactly fit well together but hey in the world of a 5 year old – anything is possible!

Whether you celebrated this holiday season with a Nativity Scene, a Christmas tree, Santa Claus, lighting a Menorah, celebrating the seven (7) principles of Kwanzaa, gift-giving, fireworks or simply feasting and laughing with family and friends, for many of us, this time of year was/is a special one. In the song, ‘The Little Drummer Boy’, we catch a glimpse of something that we can so easily miss during this frantic season of giving and receiving gifts and resolution making and breaking, and that is the opportunity to  - give what we have, no more, no less.

The little drummer boy felt inadequate at first, thinking that he didn’t have anything good enough to give but when he realized the one thing that he could give – the playing of his drums –  he quickly stepped up to the plate.

We too can feel like the little drummer boy at times - often thinking that we don’t have anything or enough of anything to give to our children, our spouses, our work, our extended family, our friends and most importantly, ourselves.

This year, let’s aim to flip this thought on its head and focus on the things that we do have to give, while considering these two (2) underlying principles as our guide:

1) Give only what you have to give, not all that you have! - While discussing different ways towards financial stability many years ago, one of my brother-in-laws, Reggie, shared with me a wonderful wisdom nugget that I have never forgotten. He said (and I’m paraphrasing): ‘If someone asks you for $500.00 and all you have is $500.00, you simply say: I don’t have $500.00 to give. You are not lying because you didn’t say that you didn’t have the $500.00, just that you didn’t have it to give!  You may have $50 or $100 to give but not the full amount, and this is perfectly ok.” This always stuck with me and I often think about it now with my parents that I coach. So many of them have completely stretched themselves as thin as a pancake trying to give everything that they have! -  to everyone else, when they know deep down inside that they really can’t and shouldn’t do it because it will only drain them on many levels. This can, and almost often does, also apply to ‘emotional giving.’

2) Saying No = Saying Yes –  Simply put, when you start saying no to others, you start saying yes to yourself!

So, as we enter into a New Year – one that I hope for you is filled with a lot more blessings and promises than challenges and heartache. As we focus on ‘giving only what we have’ in 2012, let us also remember that less is oftentimes more in several instances. You can share less time with someone but experience a richer degree of quality within that time.  You owe it to yourself (and to your family) to make 2012 a year filled with lots of giving of what you have – no more, no less.

Speaking of giving, there are two (2) ongoing gifts that I’m offering you via the links on the right-hand sidebar:

1) My recently published (yay) kindle electronic book, Differently Abled and Still Able! I co-authored it with Marianne DiBlasi, a coach herself as well as an adult living with a disability. In a conversational style we aim to turn how we view, feel  and relate to our children’s disability/special need into a much more empowered and postive one. Click on the link to the right to learn more and to buy!

2) As part of my promotion of the new kindle book, I am also offering a 10% discount off of my popular ‘Power Blossoming Coaching Package!’ Done over a one (1) month period, its aim is to help you as parents ‘jumpstart’ real and positive change in their lives in a very focused and dynamic way! Don’t miss out, click on the link to the right to get started today!

As always, I want to know your thoughts so please take a moment to leave a comment at the end of this newsletter or drop me an email at: gigi@familiesblossoming.com. I look forward to hearing from you!

Warmly,

Born out of two shared hearts, minds and similarly-felt experiences (and created via a big push from my webmaster extraordinaire Diane), this Kindle book was developed by Marianne and I based off of our successful Disability or Different Abilities 2-part Teleseminar held earlier this year.

After creating and co-presenting the Teleseminar, we received lots of feedback that helped Marianne and I realize that what we were sharing touched a nerve, in a good way, and was extremely valuable to share in a more tangible and accessible manner.

Empowered Parenting for Children with Special Needs

Our key message was and is simple – that parents (and their children with special needs) can be empowered.

Given so much of the ‘assumed disempowerment’ that is associated with children who have special needs, we wanted to challenge this notion and completely turn it on its head, stick our tongues out at it and say ‘so there’!

More importantly, we wanted to give parents the tools they needed in order to start developing and maintaining a more positive and empowering relationship with ‘the world of special needs’, their child and themselves.

We do this by sharing ourselves and our own different yet complimentary life experiences of being a parent of a child with special needs and an adult born with a disability.

Coupled with our shared wisdom as professional coaches, Marianne and I support parents in helping them to find their voices again.

We are excited to share our new kindle book with you and hope you enjoy and gain from its message just as much as we did while writing it!

Buy Direct from Amazon

“Differently Abled and Still Able – Empowered Parenting for Children with Special Needs” Kindle Edition is now available on Amazon and can be read on your computer, kindle, ereader, iphone or ipad.

Your Feedback

After reading the book, Marianne and I would love to know how it has helped you, add your feedback either below in the comments section, or contact me directly here.

Date night!

All of the relationship gurus say that couples with kids should have one or several date nights!

Our 7th wedding anniversary is coming up this weekend and my husband and I are following their advice and are going on a date!

Woo-hoo!!

During the day – huh?

Does this still count relationship people??

In my book it does – and even if it didn’t, we’re going anyway.

We came up with this idea earlier this year largely because we (or more accurately I) don’t trust leaving Alejandro with a babysitter. He’s only had one (1) since we moved to NYC 3 years ago and she worked at his preschool, so she knew him and he knew her.

I’m getting really excited about it because it will be uninterrupted couple time.

We can walk in the park, have lunch, maybe catch a movie, who knows….but what I do know is that we will be child-free for a few hours. Yay!

Wow, did I just say that?

I know I’ve grown a lot with this parenting thing because I can now say that without guilt! Being child-free for a while and focusing on your primary relationship is not bad at all – actually it’s just the opposite.

I know that feeling guilty is often a huge weight that us parents of children with special needs carry around but I’m advocating that we lighten our load a little bit.

Have a date day or night or even a date moment, if you can.

Any time spent on connecting or reconnecting as a couple will have huge benefits for your child.

My very unscientific positive domino-effect formula is this: happy individuals = happy couples = happy parents = happy kids!

So, if you haven’t had a date day (or night) with your significant other in a while, start planning it!

It’s a win-win situation and you’ll be so glad that you did.

Only problem is the word he’s saying and how he is spelling it are like night and day, oil and water, chalk and cheese – you get my drift.

The two are not similar by any stretch of the imagination because Alejandro can’t spell yet – but he doesn’t know this so he keeps on spelling.

Funny thing is that if I try to correctly spell that word he is saying, he ‘corrects’ me and says, ‘No Mummy, that’s not right, it is j-i-b-b-e-r-i-s-h (ha). Such confidence!

How can I be like that? Have such confidence that I am bold enough to try something (in Alejandro’s case, spelling) even when I don’t know what in the world I am doing?

Wow, just thinking about it makes me shiver.

Alejandro on the other hand, doesn’t miss a beat, he just keeps on going.

The best-selling author Susan Jeffers, coined it best with her classic book title being: ‘Feel the Fear and Do It Anyway.’

The point being: it is not that you won’t feel nervous, fearful or overwhelmed when faced with a new challenge in your life – you most certainly will. How you will respond to that fear is the key – will you propel forward or get knocked down and stay down? Each of us will have an individual answer to that question.

Taking a leaf from Alejandro’s book, I think I’ll propel……

No Fretting!

That’s my new personal motto and one that I’m hoping you will take on as well.

Almost all parents feel some type of guilt on some level at varying points along their parenting journeys.

• “Did I do or say the right thing?”
• “Am I doing the best for my child?”
• “Is my child happy?”

and the list goes on and on.

For those of us who are parents of children born early and/or who have special needs, this feeling can be amplified several degrees and potentially be never-ending.

Part of this is because the autonomy of our parenting role has either been taken away or significantly reduced and/or complicated.

What I mean by this is that making independent decisions regarding our children and their overall well-being is now done in conjunction with a host of other professionals (i.e. doctors, social workers, therapists, nurses, special education personnel, etc) who rapidly become involved in the care of our children.

Although necessary and beneficial, in many cases this expansive team of ‘pseudo’ parents, who advise us on everything from how to nurse our premature child to how to communicate with our child who has autism and everything else in between, can actually silently chip away at our confidence as parents.

How? Because we start listening so much to the external experts that we fail to listen to the internal instinctive expertise of own selves. The things we know as parents get drowned out by our emphasis on and worry about the things we don’t know or understand.

Cancel Your Fretting Club Membership!

If you are an active member of the ‘Fretting Club’, cancel your membership this instant.

There is a way to parent and feel good about your parenting skills – and it only requires you to embrace one concept which is:

You only know what you know when you know it.

That’s it, plain and simple.

By this, I mean that you can only respond to situations and/or make decisions based off of the available information you have in that moment. Not what you learn later or what you think you should have known beforehand.

I encourage and challenge you to be content in the knowledge you have in this very moment.

• Believe that you know enough about yourself, your child and your situation to successfully, beautifully and in some cases, creatively get through the next second, the next hour, and the rest of today.
• Be confident that you are making and will continue to make the best decisions that are right for you and your child always.

My heart stung for a split second.

Did Alejandro hear her?

If he did, did he know that she was talking about him?

We were rushing to the pool for his weekly swimming lesson and Alejandro was so excited about seeing ‘Leche’ (the nickname Alejandro has given his instructor) – that I’m not so sure the girl’s words even registered with him.

I rejoice in this possibility.

Shooting a quick glance at the little girl and her mother beside her, who grinned sheepishly at me, I mentally considered whether this was a ‘teachable’ moment I should seize. Looking down at my precious son and seeing his huge smile and anticipation for his lesson – and feeling his urgent pulling on my hand indicating that we must hurry – I decided no, it was not.

Why did those 3 little words, which were spoken so matter-of-factly (and I’m sure from a place of innocence) prick my heart then and continue to prick it long after we had left our swimming lesson?

My current reasoning, and this may very well change as I continue to ponder, is this: because she didn’t see Alejandro as a whole person – which is how I see him….but rather as a part of one.

Actually her attention was solely on his cane, so I am not sure if she even saw HIM.

I don’t blame the little girl as kids are often curious (and blunt) by nature. Her comments did however make me realize how easy it is for people with special needs or a disability to be so quickly dehumanized.

I thought about how when a person in a wheelchair has to board a bus here in NYC in which a special hydraulic lift is required. I often hear some of the other passengers on the bus saying,

• “Oh no!… It’s a wheelchair!”

This is often accompanied by not-so-silent moans from them as well because this process may slow them down by all of 30 seconds perhaps, if that!

He/She is not an it …but a person who happens to use a wheelchair.

This swimming incident only strengthened my resolve to ensure that we see Alejandro as ‘our son’ Alejandro 1st and not ‘our blind son’ Alejandro.

We’ve never once thought otherwise, but I am reminded once again, that others don’t share that same view.

My focus though is not on them but rather on raising a happy, independent and confident little boy – and by his cheeky grins, hearty laughter, curious mind and cuddly bear hugs – I’m pretty sure that we are doing a good job of making that happen.

To highlight this very special day, March of Dimes (March of Dimes) and its global partners want to saturate the World Wide Web and show how widespread and prevalent the instances of babies born prematurely really are. More importantly and personally, they want to honor the 1 million babies worldwide who were born prematurely and who died this year as well as the 12 million more babies who are currently struggling to survive.

This speaks directly and loudly to my heart and I know it does too for many of you reading this right now, who are yourselves parents of preemies. See my ex-24 weeker above!

Please join us in this important endeavor to spread the word about prematurity by going to: WorldPrematurityDay FB Page and liking this campaign.

You can also tweet about it at: @marchofdimes. Get your family and friends to join you in spreading the word too! The more people, the higher we can raise the profile of prematurity.

Shockingly the United States has a higher rate of premature births than most other developed countries and this is one of the reasons we only have a score of C as a nation. To see how your state is faring as it relates to premature births, click on: this page

A World Prematurity Day is a fantastic and historic way to honor our little ones but, like me, so many of you reading this have your very own World Prematurity Day every day. Whether your child was born 20, 10, 5 years, months or weeks ago or they just entered this world on yesterday, prematurity and all of the effects of it can and does hit you pretty hard on every level of your being.

Even today, after 5 years since Alejandro made his surprise early entrance and took up long-term residence in the NICU, I still have flashback moments where I see him not being able to breathe, or of him constantly crashing and requiring re-intubation, of the multiple aggressive resuscitation attempts, and his multiple surgeries and infections. Flashbacks  also include our seemingly endless wait to go home, which as the months slowly passed by, so did my hopes of this us ever bringing Alejandro home were passing by too.

Although remembering these moments sometimes causes me to internally freeze and panic for a minute or two, I don’t want these moments to ever completely fade away either, because there is something to be gained from their existence.

As the nation acknowledges and tries to increase the awareness of something many of us live with each and every day, I want us to shift our focus a few minutes from prematurity awareness to prematurity appreciation!

More specifically, I want to share with you some lifetime lessons my ex-preemie taught and is still teaching me about each day. I am sure many of these are lessons that some of you are being taught by your preemie and I am confident that you have a wealth of other lessons you’ve learned that aren’t highlighted here. I should note that these lessons can also be readily applied to those of us whose children have a range of special needs, whether they were born early or not.

I know that it can be hard to appreciate something that has literally knocked the wind out of you and your life as you knew it  but appreciating it can oftentimes give you the power you need to overcome it. The invaluable lessons this appreciation brings are numerous.

What I Am Being Taught by My Preemie Every Day Is:

Perseverance:
Simply hold on and hold on tight. Things (and you) will definitely get better

Resilience:
Getting back up when you get and are repeatedly getting knocked down

Enthusiasm:
Embrace life with gusto – even when there appears to be no wind in your sail

Enjoyment:
When your joy comes from within, few things without (i.e. externally) can crush you

Madness:
If you appreciate the craziness and chaotic-ness of it all, you are more likely to appreciate the calmer moments, even if they are only seconds.

Inquiry and Information :
All questions will lead you to some form of discovery about yourself, your child or your situation. Ask away!

Empowerment:
Is your internal strength personified and is the ultimate tool for life because it gives a voice to the voiceless.

What are yourlessons from your preemie?

Be still and take notice of them. Jot them down as they come to the forefront of your mind and remember: the student who learns from adversity is the student who ultimately learns how to fly. I know you can (and will) fly!!!!

So, as we celebrate and honor preemies all around the world today, take a moment to celebrate and honor your
own and embrace the many lessons he/she is teaching you each day.

To all of the wonderful special fathers and father-figures out there to some pretty special kids. I salute you and honor you on this and every Father’s Day.

Warmly,

“When you have come to the edge

Of all light that you know

And are about to drop off into the darkness

Of the unknown,

Faith is knowing

One of two things will happen:

There will be something solid to stand on, or

You will be taught to fly” (Anonymous)

By definition, autopilot is ‘a navigational system that automatically keeps ships, planes or spacecraft on a steady course.’ In people it is also defined as ‘a cognitive state in which you act without self-awareness.’ For many of us parents this often manifests itself in our ability to wash clothes, cook and clean without realizing we’re actually doing it – or driving to our child’s doctor appointment and not knowing how we even got there – or having a conversation with someone and don’t know what in the world they are saying. ”

Does this resonate with you? If so, what are some of your ‘autopilot moments?’

Having a few of them sprinkled throughout your life is ok but when if you find yourself perpetually being on autopilot – something has got to give. ”But I quite like this autopilot thing” you exclaim, “It’s my survival tool- my calm inside this constantly changing storm of special parenting and one that I don’t have to think too much about.” Great,  and I completely understand where you are coming from – but my question to you is, what is your ‘living’ tool?

What are you doing right now, today and/or will do this week, this month that will make you feel alive and push you boldly into living in the moment?

Considering the quote from above, what will make you fly? To modify a little of what Professor/Theologian, Harold Whitman said: “Don’t ask yourself what the world [or your child] needs, ask yourself what makes you come alive. And then go do that….” This challenge in no way minimizes your love for your child and other important people in your life – in fact it does just the opposite – because by doing, saying and thinking on things that invigorate you, your engagement, connection and energy with those around you is maximized.

I’ve always felt that our existence on autopilot is our own body and mind’s mechanism of surviving – of just getting through the daily medical, developmental, cognitive, educational and emotional challenges that come with raising a child with special needs. Many people have asked me how I kept my sanity (not sure if I did) and sense of laughter, during those scary 5+ months of Alejandro in NICU followed by his numerous additional surgeries and complications and developmental challenges that have continued on up until this day. My typical response was, “I don’t have a clue” - because I really didn’t have  a clue.  My faith and family were keeping me afloat – and many times I wasn’t even fully aware of these two (2) anchors in my life – but I was functioning (and pretty well, I might add, given the circumstances). Ha, ha – in just reading those last few words, I chuckled and thought how funny it is that we can get a bit defensive and protective of our autopiloting. The thing with all of this though is, I wasn’t fully living - largely because I didn’t have the energy (or desire perhaps???) to do it. As special parents, there are so  many extra layers of parenting (i.e. surgeries, medical emergencies, developmental issues, etc) and a crazy number of extra people (i.e. the professionals) in our lives, that sometimes it can feel like our lives are not our own. Autopiloting then becomes the most natural thing to do in order to survive….. but it is not the only thing.  Being a special parent can either define you or free you – which one you choose is up to you.

I realized that I was choosing the former last year, when most of my interactions with my son were based off of the many discussions and suggestions from his therapists. I had become all six (6) of his therapists wrapped up in one (1) - scary - and had forgotten how to just be his mom. My conversations with my hubby were really a running dialouge of what was going on with Alejandro/what he needed to do/upcoming appointments, etc. I had become an excellent medical, educational and developmental anchor and reporter of “Alejandro’s News” but along the way had become a somewhat ‘distant’ wife. I like exercising but couldn’t remember the last time I broke a sweat from something other than being in the summer heat.  I had stopped showing up/ being engaged/ being present in my own life.

I’m reminded of something I read in a great book, The Mother’s Guide to Self-Renewal, written by my dear friend, Renee Peterson Trudeau www.reneetrudeau.com, that really woke me up and resonated with me.

“Don’t die with the music still in you.” (Wayne Dyer).

It wasn’t even a main chapter in the book but a quote – and a powerful one that I haven’t forgotten.

So, I ask of you:

What is the song inside of you that needs to be heard? The music on your heart that needs to be played?…..in order to connect you back to your center, to your life, to yourself?

Your answer will be the catalyst that re-engages you back to you!

Enjoy your summer and stay cool!

Warmly,

1)      Regroup and replenish – He hasn’t had a break since birth and he needs (and deserves) one!….and so do we. Alejandro has been going to school year-round since we arrived in NYC a little over 2 1/2 years ago when he started Early Intervention (EI). Prior to and during his time in school, he has also had and continues to have ongoing medical and surgical complications and procedures.

2)      Be a kid – During his 4 ½ years on this earth, he’s been a ‘NICU baby’, ‘patient’, ‘blind child’, ‘child with significant developmental delays’ and any other label that others may feel best describe him. I want him to spend this summer being just be how I view and describe him – as simply Alejandro. Most importantly, I want him to have the chance to just spend time being a kid! Shouldn’t all kids experience the most basic and important element of childhood – play? Even if the play needs to be adapted or modified to fit his needs, he still needs to engage in it.

Being mindful of ensuring that Alejandro does not regress, I am in the process of creating a Summer Program of sorts, that will include a range of fun and different things for him to experience (i.e. going to a petting farm, painting class for kids, swimming, taekwondo, sensory museum, etc), so that he learns from them and continues to develop his skills as he prepares to transition into kindergarten. You can imagine the uniqueness all of these activities will have on him as he experiences them without sight but through other means. I’m so excited for him!

There is a certain level of anxiety that goes with going against the norm of what is expected of you, but in thinking about our decision for this summer, I started thinking about how truly important taking a break is – for our children as well as for us as parents. I know as special parents, sometimes we may feel like we are swinging on both ends of the pendulum – at times we feel like running away and taking a mental and physical break from being a special parent and other times, we are so intertwined with our parenting role, that we feel like there is no way we would let go of or loosen our grip on it even for one second! To clarify, when we feel like running away, it in no way implies that we don’t love our children immensely – we do – but there is a certain level of relief and freedom in not thinking about the next surgery, IEP, assessment, therapy, behavior modification program, g-tube, piece of adaptive equipment, brain scan, ongoing risks of their condition, and the list goes on and on…..

So, this month in preparation for spring cleaning (ugh) and summer fun (yay)! – I invite you to consider three (3) ways in which you can (and should) take a break! Try them on for size and see how you can fit them in your life:

1)      Put on your oxygen mask 1^st – The airline industry, whose primary concern is your safety, advocates this every time you fly. The safety video always says to put on your oxygen mask 1^st before putting it on others, including your child. This may seem a bit selfish at first glance but after a moment, it makes perfect sense.  You can only really help others if you are ok yourself – otherwise you both will suffer. Think about an ambulance being called to a fire – if their gas tank is empty or their water hose dry, then any help that could offer to the situation is null and void.

Question(s) to consider: In your experience as a special parent, what were the times you waited to put on your ‘oxygen mask’ and times when you didn’t wait and donned it first? What differences in yourself, your child and in the situation did you notice?

2)      Nourish the source – Source meaning YOU! As parents you are the foundation of your child’s life and if you are not nourished you will most definitely wither away. This may sound like a cliché but it is fact. Nourishment is different than the oxygen above – the oxygen mask is a much more immediate thing that you must do in order to survive, whereas nourishing is a process and occurs over a longer period of time. It’s crucial in this nourishment process, that you remember to feed both your mental and physical beings. When you nourish something, you cultivate it thereby giving it sustenance. When was the last time you did anything for yourself that gave you sustenance?

 As special parents, sometimes we feel extremely low on energy and take this as the norm – but it doesn’t have to be.  Think of one energy-inducing thing you used to do before that either you don’t do now and/or you want to do more of….and as NIKE says, just do it! For me, it is starting to exercise again in the early morning. I’ve only just begun and honestly sometimes I bury my head just a bit deeper under the covers when the alarm rings but it never ceases to amaze me how much better (and less hungry) I feel after a good workout. I am also carving out some space to have daily prayer/reflection/meditation time – for me, this is crucial in order to have any kind of long-lasting and authentic sustenance. Whatever it is for you, please don’t  let anything stop you from doing it – you owe it to yourself.

Question to consider: What is one thing that you can do today that will nourish you mentally and one thing that will nourish you physically?

3)      Mute the Noise – and tune into you. I like to think of this as being present, meaning that you purposely tune out or tone down the volume of all of the outside noise (people, deadlines, other’s expectations, etc) and tune in to what needs to be heard (your voice!). Everyone, no matter what your position or situation is in life wants to be heard – start listening to yourself and others will follow! Appreciate what you have to say, what’s important/valuable to you, what you run to, what you run away from, your dreams, fears, what makes  you laugh, etc. Be still – and you will be amazed at the clarity of your thoughts when they are given the space to blossom. Alejandro reminded me of this on a recent trip to Niagara Falls, Canada (see picture below and ignore my lovely’s husband’s finger in the top right-hand corner!:-). It was incredibly wonderful to ‘see’ the Falls through Alejandro’s eyes. He is wonderfully in tune to this world (and his own) so much more than I am and I was amazed at how he could simultaneously sense/hear the light flapping of a bird’s wings in the far distance and the rushing mighty waters of the Falls in front of us. Both of them are just as clear and important to him so therefore they both were fully appreciated by him.  I tend to mainly appreciate/pay attention to the ‘loudness’ of the many falls in my life and forget to hear the softness.

Question to Consider: If you listened to the softnesss in your life, what would you hear?

Lastly, I know how so very good all of us (me included) are at saying how much is on our plate. I know and appreciate that we do have a lot going on, but it’s always amazing how much more time seems to appear once we pause and make time for ourselves. So, today, this week, this month and onwards, I encourage you to pause – take a break – and begin to experience all of the beauty, clarity, wisdom and fun that it brings!