Brian’s Love Letter

Recently, I had a dream that Brian spoke for the first time at great length. It seemed so real! I couldn’t believe I was actually hearing Brian’s voice! He had a lot to say about many topics and I was in awe of what he knew! How mistaken I was to think that Brian did not understand or was not paying attention. His attention to detail on everything he spoke about was incredible! But all too soon, the dream sadly ended. I’m sure other special parents have experienced something similar and have that same longing to hear their child speak, even if it only happens in a dream.

In a previous blog several months ago, I had written a love letter from Jim and I to Brian, telling him what he means to us. This recent dream where Brian expresses himself so well, made me think that if he were to write a letter to Jim and I, he would once again have a lot to say and impart wisdom, honesty, and pure love. Our children have a way of teaching us way more than we ever could teach them, if we are willing to listen and learn. I think this might be Brian’s goal in his letter to us. Here’s what I think Brian would write if he could:

Dear Mom and Dad,

I know you would like to hear me say what I’m thinking and feeling. I also wish I had the words to tell you what’s on my mind. Mom, I have seen your sadness, especially when I’m upset over something I don’t like or understand. Although I don’t have the ability to speak , I hope that through the speech app on my iPad, sign language, my actions, gestures, and body language, that collectively these ways of communicating are enough for you to understand me, at least most of the time . You and Dad mean the world to me. There is so much I wish to say, that I would hardly know where to begin.. I hope you can “hear” me now as I try to express what has been on my mind and heart for a very long time.

I know you have often wondered if I am really OK, truly happy, and the answer is unequivocally, YES! You have tried your best since my arrival from Heaven over 15 years ago to give me a good life. I know that this has not always been easy, but you have and continue to advocate on my behalf. I am proud to be your son and I know how much you love me. Your love is the driving force that gives me the strength to persevere through all of my challenges. Sometimes I wish the world would slow down. Many moments of my day move too fast and it’s difficult for me to adjust. I don’t always understand everything, but I continue to learn more in my own time. I don’t like changes in my routine and schedule but I try my best to adjust. Most of the time I’m OK with what comes my way, because I know you are by my side and only want what’s best for me.

I know you worry about what will happen to me later on when I become an adult. It’s only natural that you would, but if you look back upon my life so far, every obstacle that has been placed in my path, as well as yours, has always been overcome victoriously by the grace of God. He will always provide a way for our family, especially when there appears to be none. Remember how scared you were when I had my open heart surgery? Or the day, Mom, when you cried so hard when I was diagnosed with autism? Or when Dad lost his job and was out of full-time work for so long? Or when Mom had her surgeries and chemo for colon cancer? I’m sure it felt like the trials of Job during those dark days, but ultimately as a family, we got through each one, better and stronger than before. No matter what happens going forward, God will always make a way and ultimately provide for our needs, of this I am sure.

I hope I am a good example of how one can live joyfully in the moment. I like taking life step by step; it‘s best appreciated and savored that way. My life has been an adventure with few dull moments and I am grateful for that. If I could skip haircuts, blood draws, dental and medical appointments, that would, of course, be my preference. I dislike these things, but am getting better in tolerating them, slowly but surely. Otherwise, I’m very content with water, music, food and the company of others- it really doesn’t take too much to make me happy as you well know.

Thank you for loving me just as I am. I can feel it in your hugs and kisses. Thank you for defending my honor at all times. I know you believe in my value as a person. Thank you for the opportunities that you provide to make my life fun and interesting. I have met many wonderful people because of these activities. Thank you, most of all, for making a permanent home in your hearts for me- there is no other place I would rather be. ❤️❤️

I love you now and always,

Brian xoxoxo

Until we meet again, thanks for reading! 😊

My Son Is So Much More Than A Case File

I have my “Irish up” at the moment, (how appropriate since St. Patrick’s Day is later on this week), which is just another way of saying that I’m pissed off on behalf of Brian today. Here’s why:

It all began last Thursday afternoon while perusing emails, one of which was from Brian’s new case manager wishing to schedule his annual individualized educational planning ( IEP) meeting on a particular day in a few months. I glanced at it and made a mental note to respond when I was feeling better, as I was coming down with the flu . Apparently not responding within 24 hours was unacceptable, when the case manager persisted with another email 27 hours after the first one, demanding an answer, as she needed to ” finalize her schedule”. That’s when it hit me- this was the first formal/ direct contact that I had with this new person in the 7 months since Brian had been assigned to her caseload.

Last Summer, I had received one of those “form letters” from the new case manager, introducing herself , complete with a name stamp for her signature. When I received this correspondence last August, I briefly wondered exactly when we would speak directly, then got on with life. Roll the tape forward now to the current situation. But before I continue, here is some historical context.

Brian’s last case manager was with him for 11 years, and while we definitely had our bumps in the road early on, we ultimately had forged together a good working relationship. She visited Brian at his school programs and became familiar with his educational needs. This is actually the perfect segue to my main bone of contention at the moment : I learned that the present case manager has not gone to meet Brian and the staff at his current school to observe him in his program this year, even after all of these months. As far as I am concerned, to schedule a meeting right now is like putting the cart before the horse. It would make more sense to get to know my son first at his school, discover what his needs are, and meet the staff who work with him, then call a meeting. I would think you are then better prepared to discuss my son’s case at his educational meeting after the school visits, but I’m making too much sense, I know.

I realize that nothing “personal ” is meant by what appears to be a total lack of interest in my son’s educational program. Special needs families are victims of an educational bureaucracy in this instance: there are not enough case managers to handle the huge caseload. Whether or not this is always true, is besides the point. There is absolutely no excuse not to visit a school program at least one time ( then provide parents with feedback ) before walking into an IEP meeting. Period.

I am confused as to how one can expect to be a part of the decision-making process at Brian’s IEP meeting, when you have never even met him. Brian is truly so much more than a case file or an obligation to sign off on. He is a person with special needs that requires his own individualized educational plan created by a team of individuals who know him. You can be sure that this story has not yet reached its conclusion. I have already begun the process of diplomatic, yet direct negotiations to ensure that the new person sees Brian at his school placement before his IEP meeting. I hope that this dialogue goes smoothly, but am prepared to go further if it does not.

Advocating for our special children is sometimes very frustrating. This story is just one example of many. Collectively, special families could write volumes on their advocating experiences, including: The Good, The Bad, and The Ugly. This is definitely not an easy road and requires lots of wisdom, tenacity, and especially patience, which I don’t always have, particularly today, as you can tell. It’s good that tomorrow is a brand new day.

OK- rant over- thanks for listening! Until we meet again, thanks also for reading. 😊👍🏻

My (Not So) Secret Wish

If you are ever looking for an entertaining and poignant documentary to watch, I highly recommend, ” Bright Lights” that originally aired on HBO in late 2016. It’s the heartwarming story of the relationship between actress, Debbie Reynolds, and her daughter, Carrie Fisher. They had an extremely close bond that was sometimes complicated, but ultimately resilient and triumphant. The love that was shared between this mother/daughter duo was something I think most Moms and daughters would hope for: a type of love that can survive tragedy, heartache, mental illness, and drug addiction, while coming out on the other side of their relationship still intact. Carrie’s trademark humor is woven throughout this 90 minute treasure and is guaranteed to make you laugh, cry, and applaud. I guess you can tell that I really love their story, and have coincidentally seen this documentary a number of times.

I’m so glad that Debbie and Carrie decided to share their story right before their unimaginable passing in late 2016, (within one day of each other, no less). It makes me think that their hearts and souls were so intertwined, that they simply could not be apart. As untimely and tragic the death of both of these icons was, it was also a gift that I think some of us would not necessarily mind when it comes to our time to leave this earth, especially those of us who have special children. I honestly hope that Brian goes before me, but like Debbie and Carrie, I also pray that I would follow Brian 24 hours later. I couldn’t bear to be separated from Brian longer than that. I know this may sound morbid and horrible to some people, but I also think that my ( not so) secret wish is not necessarily that unusual. In fact, I’m positive that there are other special parents who feel the same way. I’m also aware that my wish may not be granted, as God may have other plans for my life, (I do believe God’s plans are always best), as well as for the timing of my death. Still, I don’t think it hurts to ask. I do ask quite often, by the way, as imagining Brian’s life without Jim and I in it, scares me to death…

The natural order of things is for our children to outlive us. One generation passes the torch to the next, just like it always has been and will continue to be. If Brian had been born a “typical” child, I would certainly want him to outlive me and could not imagine otherwise. But the fact that Brian has severe disabilities is a “game changer” and has significant ramifications if my husband and I were to die before him. Why? No one will ever care for Brian the way Jim and I do. No matter how well intentioned other caretakers are, it is simply not possible. Of course this makes perfect sense: no one knows a child like his or her parents. Parents know every square inch of their child from head to toe, as well as what is going on inside of their head, their heart, their likes, dislikes, fears, hopes, and dreams. In our situation, some of these things are not quite so apparent, though we continue to discover with Brian exactly what makes him tick. Brian does indeed have his own likes, dislikes, needs, and concerns. It is my greatest fear that others entrusted to his care will not understand these things when Jim and I are gone, no matter how well we spell things out beforehand. At this juncture, we don’t even know who “they are”, which invokes a whole other level of fear, especially because Brian is our only child.

Like many other special parents, we are watching closely, researching potential possibilities for later on, and praying A LOT, that the right “option” will become available for Brian when the time comes. We are hopeful and scared at the same time. The underlying dread of the future coexists with the present moment of today and time seems to bring the two closer together…Sometimes I can’t believe how quickly the 15+ years have elapsed since Brian’s birth, despite some very long days along the way that we thought would never end. There is certainly a possibility, though, that I will outlive my son. I have the genes for it: my maternal grandmother lived to 96 years old and my paternal grandmother lived to 102 years old! I try to eat healthy and exercise so that I can live to a ripe old age for my son. I can definitely envision myself still advocating for Brian years from now with special glasses, hearing aides, and other ” silver enhancements” that will keep me together in one piece when I’m an old lady, lol. A part of me, though, really can’t imagine sticking around THAT long, but then again.. The lifespan for people with Down syndrome is longer as well: the average age is now 60 years old, thanks to better medical care and life experiences. We will just have to see how everything ultimately plays out, which is of course the scary part…

At the end of the day, I don’t want to become paralyzed by fear when it comes to Brian’s future later on, hence, why it is good for me to address the “elephant in the room” in this type of forum, even if there is no current resolution. I’m putting my fear ” out there” and paradoxically, my fear is actually more manageable, even though it’s still quite present. We don’t know what the future holds; perhaps there are good reasons for that, as well as scary ones. As I look back on Brian’s life so far, there has always been and continues to be a “Higher Power” at work in his life, as well as in ours . I may not always agree with why things are as they are, and certainly wish they were easier. Yet, despite the fear and uncertainty, I have hope for what is still yet unseen. There very well may be untapped blessings/resources later on that we had never even considered or are not yet available, whether we outlive Brian or not… But there is one thing that is absolutely certain: without hope, it’s impossible for me to put one foot in front of the other. In the meantime, I don’t think God minds my ( not so secret) wish and will take it to heart every time I ask Him, which of course is my plan until further notice. 😊

Until we meet again, thanks for reading! 😊