Appropriate words can be as simple as hello or good morning

My previous post was a reminder of words that may be viewed as inappropriate to someone who has special needs. One of my loyal readers asked me to do a follow up and mention a few things that would be appropriate words to say. I always try to keep in mind that some people are a bit more sensitive than others, but in my opinion if we just remember these three things kindness, compassion and a welcoming smile, the rest will fall into place. I totally understand that it is difficult to know what to say or how to act around people of different abilities, but please try and overcome this. A very simple thing to say is... “Hello” or “good morning”. Just the same thing that you would say to anyone else. Hailey is considered non verbal, she is certainly not non-vocal. It is always appropriate to speak to her directly, even if her response is not one that you understand, that is o.k. she is in the room, lets include her. My mom loved Hailey so much, but had no idea how to talk with her initially (miss you mom :( When she was at the house, she would look at me and say “how’s Hailey” while Hailey was right beside me, I constantly said, she’s right there mom, ask her. Now, that didn’t make my mom a bad person, she just needed a little help in understanding how to talk to her and when she finally understood, she would ask to speak to her on the phone every time she called. I would assure my mother that Hailey was smiling in acknowledgement of hearing her voice, and that made us all happy.
The same principles that apply to typically developing children apply to children who have special needs -just at a different pace to match their learning abilities. It is o.k.and even welcomed to introduce your child to Hailey, or if you know us, ask to arrange a play date. Like other 4 year old girls Hailey loves to play, she enjoys other children, she loves dolls, and going in the swimming pool. She also has many things that she doesn’t like, she has good days and bad days. She has a beautiful smile that helps to define her character, her disability does not. ( But don’t let that smile fool ya) Her scream is probably louder and more demanding than anyone I know, her emotions can go from one extreme to the next at the drop of a dime. Her frustration level sometimes seams higher than the tallest mountain. Her personality is her own.
Hopefully this has helped you to interact with people who’s needs may be different than yours. I hope I opened your eyes, your mind and your heart. Hailey has certainly done that for me.

Just a little reminder:

Sometimes words and actions can be hurtful. Being the grandmother of a beautiful little girl who just happens to have C.P. I am reminded everyday how words can be hurtful, more often than not these words are not meant to be offensive, or hurtful, it is simply the lack of understanding.
So I thought I would just subtly remind people to choose their words a bit more carefully. I can’t tell you how many times in a week, Hailey comes up in conversation (well, hundreds of times actually, after all I am a proud Grammy). Very often when I happen to see or hear from someone that I haven’t heard from in years or perhaps it just comes up in general conversation that Hailey has C.P. It never fails, the dreadful words slip off their tongue effortlessly and without much thought “...Oh, i’m so sorry, that must be so difficult, is this something that she will grow out of” or how about this one...she will never have a good quality of life. Though I am well aware that her quality of life will be compromised, the reminder is unnecessary and I chose to focus on challenging her everyday and promoting her independence. These are the kinds of things that will benefit her best. I’ve heard people say that people with C.P. and other disabilities are not normal, and I can’t help but wonder who decides what “normal” is.
As defined in Wikipedia... In behavior, normal refers to a lack of significant deviation from the average. The phrase "not normal" is often applied in a negative sense (asserting that someone or some situation is improper, sick, etc.) Well, Hailey is not improper at all. Actually her actions happen to be more proper than the people who ask these silly questions or make these remarks without thinking them through. Now, don’t get me wrong, I am not saying that I didn’t do or say similar things before Hailey was born. I had no idea what to say or how to act around others who had a disability. But now I know better, and I want you to know better too. Always be aware of the impact your words can have on others. Teach your children that it is o.k. to talk to people who have a disability, otherwise you are not only sending my child the wrong message, but your child as well. I think it is all in the education, it is the process by which society deliberately transmits its accumulated knowledge, skills and values from one generation to another, so please, pass it along.

Well...it's official

Well...it's official

Hailey is going to be a big sister! Oh, I guess that would make me Grammy again.

Though I am convinced that this is ultimately the best decision my son and Natalie have made for their family, I am also glad it was not my decision to make.

When Hailey was born with Cerebral Palsy our family had to learn a whole different way of life. We found ourselves in unfamiliar territory, as if someone had knocked the wind out of us. We were shocked, we were scared we were in disbelief. We listened attentively at what the nurses and the team of specialists had to say. After performing an MRI the words I remembered most were "Hailey has severe brain damage" So because of this I have always been deeply divided on the pregnancy issue, that is why I am thankful it is not my decision to make. There are many times when things get tough, but should that be reason enough to not have another child? I think the answer to that question is no. Having a typically developing child will be healthy for their family as a whole. Tom and Natalie are loving and nurturing parents, I really have nothing to worry about. So why do I worry? I worry because adding a new life to the family will definitely effect the family in many ways, I worry that a new addition will get in the way of Haileys Conductive Education and other things that are important for Hailey.(Is that selfish of me)? I think the overall effect on Hailey will be a very positive one. I think about the fact that Hailey will probably need the help from a sibling later in life after her parents are gone, and I think what an important role a sibling will play in her life for many years between now and then.(is that wrong too)? Many children with siblings with special needs develop a maturity and tolerance that other children don't have. Because of this i'm sure he or she will be the best teacher, role model and advocate that Hailey can have.
The impact that Hailey will have on a new baby is also positive, I know she will just love having a baby sister or brother. She will teach her brother and/or sister how to be accepting of others, she will teach them how to smile because hers is so contagious, she will teach them patience, and most of all she will show them, just as she has shown us unconditional love. She is going to be the best big sister ever, I just know it! So i'm going to stop worrying now, embrace the moment and let myself be happy, because I know that Tom, Natalie and Hailey are happy and that is what matters most, so congratulations to my beautiful family! I love you all so much.

A tribute song for sweet Caylee Anthony

A tribute song for sweet Caylee Anthony

Greeting Cards

Growing up in Boston was a constant inspiration for me.
I love to paint the brownstones in the South End (especially in the
spring time when the Dogwood are in bloom), street scenes, traffic
lights, umbrellas,and most of all people. I love the human figure and
all of it's quirky imperfections. I need life in my work in order for it to
seem real. Recently I have taken some of my favorite Boston inspired paintings and made them into note cards, an additional fundraising effort to help send Hailey to Michigan again for another session of Conductive Education. I am honored to say that The Dana Farber Cancer Institute chose one of the images above(ducklings with the red sox hat) to help raise money for Cancer research and for patient care!:) It feels good knowing that my artwork is being used for such a good and worthwhile cause, just like it is being used to benefit Hailey. I am also proud to say that Cedar Grove Gardens is the first place to allow me to sell my cards, I must say that I enjoyed it very much to see a customer come in today and purchased 8 of them, she said she absolutely loved them! I eventually hope to also get them in to touristy type stores around Boston, they would be great sellers in a shop/cart in fanueil hall, hospital gift shops, stationary stores. etc. I would love to get them in the chain stores like The Paper Store or Hallmark etc. O.k., maybe that is being a bit too ambitious but you never know what could happen if they fall into the right hands. Another way that I thought of to get them out there was to ask friends to help out by taking 10 boxes and selling them to their co-workers and friends. Is this asking too much? Does anyone out there have any better ideas or connections.

Did you know that I accept commissions and the majority of the paintings you see here on my blog are painted from photographs? Did you know that 100% of the proceeds go to sweet Hailey’s Conductive Education? Can you help to get her there in October, maybe you know somewhere or work somewhere that will carry my greeting cards too? If so you can leave a comment below or email me harrold.janet@gmail.com