There are certain things in life that all of us would prefer to postpone or avoid all together. The very first one that comes to my mind is the ” biannual oral torture chamber”, otherwise known as the dental visit. Dental appointments make me want to run for the hills and never look back! Yet, I love eating, so in order to do that, it’s best if I have a full set of teeth to eat with! 😁I’m not so crazy about the gynecologist either, or really any doctor for that matter! How about this one- filing your income taxes?!😳😫 These are all examples of life’s necessities, if we want the best outcome for our health and financial well-being. This also includes legal necessities, which especially becomes important when we have family members that we are responsible for, particularly our special children.

Brian is a very good reason to have our legal affairs in order NOW, versus later on. In fact, for his financial protection it is actually paramount. You never know what can happen- tomorrow is not promised for anyone. Brian needs a plan if Jim and I are no longer here. It can be an emotional process to go through, and it certainly was for me, but in the end it’s worth it. I’m so glad the estate planning is done. The estate plan includes: a will, power of attorney, medical directive, and a special needs trust. Our wishes for Brian are now known and will be carried out if we are not here- there is so much peace of mind in that! We did an estate plan with a special needs attorney almost 3 years ago. There is an ongoing review and revision of the estate plan as things change. Our trustees are kept informed and given copies of all legal documents. So, if estate planning has been on your “to do list” for a while, please don’t postpone it any longer- make that call to the attorney! You will be so glad that you did. I have found that this experience has also been very helpful in other types of estate planning, specifically, for my Mom.

Many special families not only have their children to advocate for, but they may also have their own parents interests to protect. Such is the case with my Mom, Brian’s Nana. Legal issues were not so much a concern when my Dad was alive. My parents did have a will, power of attorney, and medical directive already in place. Therefore, my father’s wishes were already made clear to our family later on when he was diagnosed with lung cancer. I can’t tell you what a relief it was to know this information ahead of time, and not while Dad was going through treatment. It was such a physically and emotionally draining time for our family, so one less thing to worry about was invaluable.

While Mom and Dad did a good job with their legal planning, it was incomplete. Now that Mom is on her own, she needs that extra legal protection of her assets that she didn’t have before, hence, the establishment of her trust and the revision of the current legal documents. My siblings and I are learning the ropes of her estate planning by legal counsel from an elder care attorney. Like Brian, we want to make sure that her assets are protected. This becomes especially relevant if she were ever to become incapacitated and/or require long-term medical care. It gives Mom, as well as my siblings and I, peace of mind that she is fully protected. All of us are learning a lot together as we go through this particular process. The most important “take away” I have learned is to seek counsel from an elder law attorney when you become a senior citizen in order to protect your assets. It’s a complicated system that requires an expert who understands the laws and knows how to best serve your interests.

Mom has been a trooper so far through these unfamiliar legal waters. She will text me quite often with concerns or questions about the rationale for her estate planning, complete with emojis ❤️😊 ! Her queries are well founded and logical- Mom is truly amazing for her 87 years young! She is quite lucid for her age and healthy overall- two gifts that she doesn’t take for granted. I admire her tenacity and courage to live her life, despite the tremendous void that she feels because her beloved is no longer here. Mom is an honorable woman who has always tried to do the right thing, especially for her family. I was especially proud of her today during our meeting with the elder care attorney. She had all of her requested legal documents organized neatly for the attorney and asked many pertinent questions. Mom conducted herself with grace, although she confessed to me that she was nervous beforehand. Dad is surely rooting for her every step of the way from Heaven, while my siblings and I are Mom’s first squad cheerleaders here on earth. It’s the least we can do after all she has done and continues to do for our family. It is truly our honor and privilege and we wouldn’t have it any other way.

Until next time, thanks for reading! 😊

One of life’s surprises when raising a child with special needs is to discover how puberty can sometimes arrive right on time, or even much earlier than expected, despite the developmental delays. At least this was our experience with Brian at 11.5 years old and the initial discovery was quite shocking!

It was just another post–shower, towel- drying, kind of day for Brian when I discovered “hair” in his groin area that I initially thought was attached to the towel. I attempted to remove the hair and quickly discovered that it was pubic hair attached to Brian! 😳 I reacted by screaming for my husband, who came running upstairs, expecting to see blood or a broken bone.

Jim: “What’s the matter?!”

Me: ” Brian has pubic hair!!”

Jim: ” Yes, that happens!”

Me: ” How is that possible with that baby face?! I thought puberty wouldn’t happen until when he was at least 30! ”

As ridiculous as my reaction was, I honestly didn’t believe that the onset of puberty for Brian would be SO early , as his other developmental milestones have always been so delayed- how ironic- who wudda thunk it? Well, it was time for me to revamp my whole way of thinking about this particular journey and it does make me a bit scared.

So far, Testosterone has been Brian’s friend, despite significant physical changes, like more body hair, broader shoulders, and a deepening of the tone of his voice. A moustache is starting to come in too, and an appetite that would match King Kong! Seriously, I have never seen a person consume so much food and still have room for more! Brian is also aware of his private parts, so we are trying to teach him appropriate social behavior on this front, and the concept of ” privacy”, but you can imagine this is not the easiest of lessons to teach to a severely disabled young man. Fortunately, he is easily redirected, but the whole sexuality issue in general is worrisome as it pertains to behavior and our children being potential victims, especially since they can’t tell us anything. 😞

Adolescence has also changed Brian’s personality to one of a young man who would rather lounge around in full “lie down on the couch mode”, with his hands behind his head. He is not in any hurry to do anything anytime soon. You would think the weight of the entire world is on his shoulders the way he “sighs” when asked to do something. Or how about when Brian is told to get up, he stares at us, then ” thinks about it” first- for quite a while! Brian has his own plan to do what he wants- sound familiar?

Brian recently decided to head to his bedroom after a shower and settle in his comfy chair with a book. He made it clear to me to “get lost” by waving me away. He also recently decided to sleep in the same chair one night after he went to bed, where we found him very late one night. Brian has also started to pick out his own clothes for school. I fear he may be a bit color blind, however, based on his choices, but he is trying. I’m actually very pleased to see these moments of self assertion and independence and believe that adolescence may be maturing Brian in this regard. Hopefully, this trend will continue in a positive way. Of course there is always a down side.

Hormones can also reek havoc in all adolescents and our special kids are not exempt. Testosterone can make our sons aggressive and physical. They don’t understand what’s happening and can’t communicate what’s bothering them. Sometimes I’m sure it’s just the testosterone itself, causing the aggression, similar to girls who suffer from PMS. It’s a difficult phase of life, and one I personally would never want to repeat. I can only imagine how our kids feel… it ain’t easy!

In the meantime, at least I understand why Brian waves me off these days, slams the door, and ignores my requests. He is growing up, asserting his “Teen Tude” and doesn’t need my interference, lol. For these moments of independence, I am happy for Brian and wish him many more throughout his lifetime. I pray that he will continue to assert himself whenever he is able to with the support and love of those who know him best.

Until next time, thanks for reading!😊