posted in: Newsletters | 2

After intense consideration, my husband and I have decided to give Alejandro a break this summer and not put him in summer school….much to the dismay of many of the teaching staff and therapists who work with him. They feel he may regress – we feel he will blossom! Here in NYC, and I would presume in other states as well, the educational system strongly encourages children with special needs to attend school on a 12 month schedule (inclusive of a few breaks in between), as appropriate. The 6 week summer schedule is offered to ensure that children don’t lose what they’ve gained throughout the school year. Honestly, in our case at least, I think Alejandro will gain more from being out than in, mainly because he will be able to do two (2) very important things:

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 1st – 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 1st 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!

gigi signature

2 Responses

  1. Gigi, you brought me to tears with your courage and choice to trust yourself about what’s right for Alejandro this summer. Be a kid!! What a magnificent gift you are giving your precious son.

  2. Yes! I so agree with your decision to take a break. We recently moved and took a big break from a very test-happy, services rich enviornment to one of our own creating. Life is better. I feel like I am constantly battling this idea of normalcy and accepting of disability. I want my son to have a “normal” life (i.e. not constantly leaving school for therapy etc.) and I want him to embrace his body and all that it can and can’t do–I don’t want him to feel like we’re constanty trying to “fix” him. I also realize and am trying to accept that he might benefit from some extra therapy, some extra eyes, some extra stretches. We are working on how to fit that into all of our lives an not make ourselves crazy in the process.
    Thanks so much for sharing your thoughts.

Leave a Reply