Let’s face it- life can be very difficult and sometimes down right unbearable at times. All of us have gone or will go through adversities during our time on this planet. This is especially true for special needs parents , for whom the daily struggles with their kids can weigh them down physically, mentally, and emotionally. I can definitely be counted among this group during certain periods over the past 15+ years, to the point where I had almost forgotten how to laugh. Somewhere along the way, I started to lose my humorous self about 5 years ago, and was temporarily replaced by an intense, serious person.

I was always Brian’s “Super Mom”: always on a mission, always trying to put out fires, always searching, seeking, and advocating. Stoic on the outside, but miserable on the inside. Worn down, but kept going because there is no choice. Wanting to cry, but too tired to even do that on some days . Losing myself to the point where I really didn’t want to get out of bed a lot of the time, yet I needed rest desperately. What happened to the fun-loving girl that I used to be? I missed that girl and so much wanted her back in my life! I knew that I was really in trouble when one day I had no desire whatsoever in ever going outside of my house again, which was so unlike the Brenda that I used to know. I had finally hit my brick wall.

I had to very reluctantly admit that I needed help- first to myself, then I came clean with a close friend, who is coincidentally a therapist, so it was truly a double bonus, what a God send! She helped me to understand and see where I was trying to be “in control ” of my life, how I was operating out of a place of fear, (especially where Brian was concerned), and how I never really grieved Brian’s diagnoses, my colon cancer, my husband’s job loss, along with other “stuff” from my past. Gosh, there was a lot of painful work to be done and I am still a work in progress today! I will say that going through the emotional muck in my life was excruciating, but necessary for my mental release to a place of peace.. I shudder to think what would have happened to me without this professional help and the grace of God. I will always have this “Achilles heel”, but am now better in identifying and managing these challenges with the tools that were given to me: faith, hope, prayer, self-care, and a sense of humor. It’s too hard to manage this life on your own will and strength. Whenever I do leave my house now, I bring my “tools” along, especially a sense of humor, because it’s too important to leave behind!

Humor and laughter can help heal the body by releasing endorphins so that we feel better- that’s a huge bonus! I was encouraged by my oncologist during chemo treatments to find laughter wherever I could so that my immune system would become stronger. I still feel better after a hearty laugh no matter how difficult the day has been. Humor helps us to cope with challenges, gets our minds off of things that we can’t control, and enables us to forget our troubles, even if just for a little while. Lord knows special parents could use as much humor as possible in their lives! I love to be around humorous people, you know, the ones who cause you to laugh so hard that you cry! My friend, Karen, is that way-just thinking about some of the funny things that she has said or done over the years causes me to laugh all over again! Laughter and humor ultimately helps me not to take myself so seriously, reserving emotional energy for what’s really necessary. That’s a really good thing for me, my husband, and Brian.

Seeking humor, laughter, and fun is now as important to me as breathing air, so I tend to actively seek those people, places, and things that will make this possible. I love my funny friends; they are such a huge, healing blessing in my life. I also love humorous movies, jokes, and pranks. There is also nothing like a funny story to tell or hear that emotes the best belly laughs. It’s amazing how you can train your mind to seek these things and how your mental perspective can be altered for the better as a result of them.

There is also nothing like props to get a laugh fest going too: the above are compliments of my friend, Karen, who gave these surprise goodies to a group of our friends when we were all together last year. The prop possibilities are endless and so is the laughter!

Time waits for no one. We are reminded almost daily how precious and short life can be, especially as we get older-all the more reason to seek those people, places, and things that bring you joy and laughter, especially in the midst of life’s trials and tribulations.

Wishing you many laughing returns!! Until next time, thanks for reading. 😊

For as long as I can remember, I always wanted to be a Mom. When I was very young, I used to think that I would have 5 children by the time I was 30 years old, 2 years apart, all boys. I have no idea why I had this particular number of children in mind or why they had to be that particular sex. It’s funny how a young mind works sometimes, but I always knew that children would be a very important part of my life, even though I wasn’t quite sure of the particular details at the time.

I began babysitting as a preteen and was exposed to a whole array of kids and personalities, including a young teen with Down syndrome. Little did I know at 13 years old how important that special needs sitting experience would be years later… I found children to be fascinating and fun. I loved being with them and felt I related well with most of my charges. It was also great earning some pocket money and having the opportunity to watch kids quite often, as I was fortunate to have several families who were my “regulars”.

Gradually , I moved on to other jobs to earn income while I was a college student, but I never forgot my “first love” in working with kids and eventually earned undergraduate and graduate degrees in education. However, I ended up taking quite the circuitous route first with careers in the airline and pharmaceutical industries, before ultimately going to the classroom. I had a very rewarding experience with the students I taught over a 5 year period which ended shortly before Brian was born.

Everything drastically changed the moment Brian arrived into the world. Life as I knew it would never be the same. My heart’s desire to become a Mom had been finally fulfilled. This journey has been quite the roller coaster ride, filled with twists and turns, highs and lows. I didn’t know that you could feel such intense love and pain at the same time. I never realized how hard it was going to be. I didn’t consider the costs, the sacrifices, and the intensity of parenting before coming one. There is a blessing to all of that, I realize in retrospect. If I had known all of this ahead of time, I’m not sure if I would have become a Mom. There is a reason why the future is not revealed to us.

Fortunately, I had a great role model in my own Mom growing up, so the decision to ultimately become a parent myself was the right one. She made motherhood look effortless , although I realized it certainly wasn’t for her at times. All kids are challenging and have their moments; my siblings and I certainly frustrated our Mom on numerous occasions, but she always provided us with consistency, love, and support, no matter what. I am forever grateful for the examples Mom showed me of how to be a good mother. It is my daily prayer that I can do the very same for Brian, as Mom did for me, so that he too, knows how very deeply loved he is. I think Brian knows how much he is loved- but it’s hard to know sometimes for sure with a non verbal child. We can only go by how Brian ” communicates” and by all accounts, he is generally a happy, loving kid, so my husband and I would like to think that we are doing all right by our son.

Motherhood has ultimately changed me for the better; it’s rigors have demanded it, and while I certainly wish certain things weren’t so difficult, I can’t imagine not being my son’s Mom. Motherhood has also enriched my life in many wonderful ways, despite the hardships and heartaches, and I have Brian to thank for that! Finally, Motherhood has given me numerous gifts and unique challenges because of having a disabled child that I would not have had otherwise:

1. Motherhood is a joy- There is nothing like holding your child, seeing them smile, or delighting in what makes them happy. It is one of life’s purest joys to see your child enjoy each aspect of his/her life. I am able to view life through Brian’s loving and unique perspective, a huge gift for both of us!

2. Motherhood is a sorrow- You want to solve all of your disabled child’s problems, but you can’t. You feel helpless when your child has surgery and know they are frightened. You feel your child’s pain so much, whatever that pain is, that your own heart hurts. 😞

3. Motherhood is a disappointment sometimes- We don’t always get what we hope for as parents. We will be disappointed sometimes in ourselves, and in our situation with Brian, the complexities and frustrations related to his disabilities can be disappointing at times. This has nothing to do with the beautiful boy that he is, but rather, the impact of the challenges that he lives with on a daily basis effects our family profoundly.

4. Motherhood is frustration and patience is a virtue. You wonder how many more years it will take your special child to learn a basic skill or how much longer you can listen to the same song. You take a deep breath when dealing with the endless bureaucracy and people that it takes to help your child. You often have to take a deep breath, count internally to 10, or say mantras like, “serenity NOW!!” to maintain your composure and sense of humor.

5. Motherhood is exhausting. Brian will be my “forever boy”, even though he will become a grown man. Special needs parenting is forever, not for just a season, as it is for most typical parents. Special Moms can get worn down very easily and it does get harder as time moves forward: our kids get bigger and we Moms get older. We love our children intensely, but we desperately need breaks too from caretaking . I find this especially true for myself as time moves on…

6. Motherhood is love- There is no love deeper than the love between a mother and her child. I would have never believed that before having Brian, but I sure do now! It is that same instinctive, intense bond of love that we Moms are privileged to share with our kids, that also makes the difficulties more bearable. I sometimes have to remind myself of that, particularly in the middle of a challenge. It is these truths that will sustain me, especially when I have moments of doubt in my abilities as a mother. I know now that I was always meant to be a Mom, specifically, Brian’s Mom. Thank you, Son, for giving me that opportunity-I love you! ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

Happy Mothers Day to all of the great women who make a huge difference in the lives of their children! May you know how much you are deeply loved and appreciated, not only this Sunday, but every day! ❤️❤️❤️

Until next time, thanks for reading! 😊

Last week, Brian and I had the opportunity to join Jim on his business trip to Dallas. It was a wonderful adventure on many fronts; we explored the Dallas Zoo, Dallas Acquarium, and the stockyards in Fort Worth. The longhorn cattle were something to behold and the friendly Texans who we encountered during each of these experiences couldn’t have been nicer! I confess that I was a bit suspect of the locals southern hospitality initially (must be a Jersey thing, lol), but it didn’t take long to realize that it was truly genuine. We were welcomed wherever we went and the reception for Brian each time was fit for a king!

We also mixed a bit of business with pleasure by touring one of the special needs facilities for disabled adults, as well as one of the resource centers in the Dallas area for Down syndrome. These visits were well worth our time and provided us with insights as to what resources are currently available. Like many special needs parents, we think about our son’s adult years a lot, specifically, what is going to happen after his formal education is over? Where will Brian go? What will he be doing? We pray that he will not be sitting home doing nothing. Brian still has 6 years of school left, but that time will pass quickly, so it’s never too early to explore and research potential options. It is a faith walk for sure, as there are so many unanswered questions at the moment…

During our visit in Dallas last week, Brian and I also had the chance to interface with many typical parents and their kids during our visits at the local mall, zoo, and acquarium. These families were quite curious about Brian and genuinely interested in him. It was a disarming experience at first, but one I grew to like very quickly. We received very few stares of disdain, and only one “eye roll” when Brian waved to a woman and her child during our time in the Dallas Galleria Mall. There were also a lot of “Y’all are amazing parents”, “Brian is an angel”, ” Y’all are so special and blessed”, etc. I politely responded with a thank you, but at times internally rolled my eyes too. I have no doubt of the sincerity behind these compliments, and I’m sure I would have said them myself if Brian had been a typical child. But our reality is very different. Brian is certainly not an angel all of the time and some days feel more like a curse than a blessing. Brian is also not always accepted for who he is in the community. I think a lot of that has to do with misinformation and a lack of communication. Sometimes people only see a “snapshot” of who Brian is, then make assumptions about him that are not accurate. As a former educator, it is natural for me to teach and inform others about my son, when the opportunity presents itself, IF I feel the person is receptive. While the greatest support system and understanding comes from other special families, special parents also want relationships with extended family and typical families. I believe these relationships can flourish when we “speak our truth” about our special journey with our disabled children. While there are many specific things that each special needs parent would like for their extended family and friends to know about their disabled child, the following is true for most special needs families across the board:

1. We don’t want pity because we have a disabled child. Compassion and understanding are much better alternatives.

2. Staring at our child is rude and makes us uncomfortable and annoyed.

3. If you are not sure how to interact with our children, please ask! Your preconceived notions about disabilities may be pleasantly altered when you see what our kids are capable of!

4. We appreciate when our children are invited to your social gatherings. They may or may not be able to attend, but the point is, our kids are also included.

5. Similar to #4, we special parents also appreciate invitations to socialize with both special and neurotypical parents. Raising a disabled child can often be an isolating, lonely experience. It helps to connect with other adults.

6. Please don’t minimize our challenging situations with well-intentioned platitudes- it can sound patronizing!

7. Please don’t judge our parenting style with our children, nor offer advice unless we specifically ask for it.

8. If you are looking for a gift idea to give to a special family, your time would be most welcomed! Time together with our children or time just with our children, so that we parents can go out for a meal or to a movie for a few hours, would be greatly appreciated!

9. If you are looking for gift ideas for our kids, please ask! My son doesn’t like toys, but he loves books, music, and swimming.

10. Our parenting experiences may be quite different, but fundamentally, we are just like you: we love our children too and also want them to be healthy and happy.

11. We worry greatly about who will care for our children later on when we are no longer here. It’s the Damocles sword that hangs over our heads daily…😞

12. We may appear strong, but we struggle both physically and mentally with the demanding, often repetitive care, of our kids.

13. Advocating for our children and managing every aspect of their lives is a lifetime commitment that is often exhausting.

14. We will go to any lengths and/or take any necessary measures to ensure that our children are afforded opportunities to learn and engage in life experiences

15. The “Highs are Higher” and the “Lows are Lower” in our world. Little steps are HUGE accomplishments, while setbacks, big or small, are felt more acutely.

16. We love our kids with a fierce intensity- we are their protectors and advocates. We are the “voice” for our children and always will be throughout their entire lifetimes.

17. We are not “super parents”, rather, we are ordinary parents who have been placed in extraordinary circumstances.

18. Our kids show us how to live in the moment, one of the best gifts my son has given to me.

19 Being the parent of a disabled son has made me a more mature person, has taught me perseverance, and continues to teach me patience.

20. You have 3 choices when you have a child with special needs: 1. you keep going, 2. you give up, or 3. you take breaks when you can’t keep going and you want to give up. Self care is not a luxury, but rather an absolute necessity .

That’s all, Folks, until next time- thanks for reading! 😊

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!😊

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! 😊

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. 😊👍🏻

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! 😊

It started off as an ordinary food shopping expedition this morning at our local Shop Rite. I immediately proceeded to the deli counter, (which was crowded as usual), when I first entered the store . Today was no exception- you would think they were giving Billy Joel concert tickets away, there were that many people! I grabbed my number, then went over to the veggie and fruit section since there were 10- 15 people in front of me at the deli. It was time for the usual “beat the clock” game that I do every week: I try to place as much produce in my cart before my deli number is called. I completed this mission successfully, with 4 people still in front of me to spare. Quite pleased with myself, I started to go through my emails and texts while waiting for my number to be called, only to be interrupted by a woman standing next to me. ” This deli counter is always crazy every time I come, they should hire more people” she complained. I concurred that the deli counter did indeed have its hectic moments, like any supermarket.

This lady then proceeded to tell me her entire life story. She was picking up deli meats to host a luncheon today for her young grandchildren, a boy and a girl. She showed me photos of these 2 adorable youngsters, then asked if I had any children. I proudly showed her Brian’s school picture, which she stared at intently for what seemed to be an eternity , then exclaimed: “what’s wrong with him?” Not: “He’s a handsome boy” ( which I happen to think he is of course) or ” what beautiful eyes he has” or “what a lovely smile”- nothing even remotely like that. Fortunately, my deli number was just called at that moment, so I didn’t have to reply and proceeded to ignore this woman while I placed my order. She definitely struck a nerve so deep inside of me that I even shocked myself. If I had looked again in her direction, I’m not sure whether I would have pummeled her or begun to cry. I probably would have done both, truth be told.

I know it was just a stranger who was clearly being insensitive and inappropriate, so why did it bother me so much? It shouldn’t matter what anyone says about Brian. Yes, I know that Brian happens to wear his disability on his face because of Down syndrome. But this has nothing to do with who he is! Yes, I also know that he stims, vocalizes, and perseverates on many things because of autism. He has many quirks that make him unusual and challenging. I know this better than anyone. I wish his challenges did not exist and am often sad for my son because I know that life will not be easy for him. Brian will always require assistance with all facets of living for the rest of his life . But there is nothing ” wrong”; these are just incidental details about what my son needs.

I suppose these realities were the trigger which this woman activated in me this morning. Plus the fact that I didn’t have my cup of coffee prior to leaving the house was obviously a huge mistake- lesson learned! But Brian’s life is not a “tragedy”- he actually lives a very good life, one that includes people who love and care for him, and activities that give him joy and purpose. Brian’s quirks also make him beloved and sweet. He gives the best hugs in the world, he is generally happy, and loves others. I adore my son and take great exception to anyone not giving him the respect that he is due, just like any Mama Bear would. Thank goodness Brian doesn’t understand when people are being insensitive or rude, a true blessing in disguise. A part of me wishes that I could have responded back to this woman with ” what is wrong with YOU to ask such a question?”, or, ” unless you have something nice to say, don’t say anything”, but I was too flabbergasted! I kept telling myself that she just didn’t know any better, as I hurried off with my deli meats, holding back my tears. I had to take a “time out” in the water/ juice aisle for a few minutes, which was luckily empty at the time.

Fortunately, such encounters are very rare, so much so, that I honestly don’t remember the last time anyone spoke disparagingly about Brian. Our society has come a long way as far as acceptance and appreciation of the value of disabled people, just for being themselves, as well as for their talents, and contributions. Thank God for that, but obviously the work is not complete and there is still much to be done. I am grateful for the overwhelming majority of people in Brian’s life who see him as a valuable person, worthy of the same respect and love that all human beings deserve, and treat him as such. Nothing warms my heart more or encourages my spirit. I see not only the huge difference that the people in Brian’s life make, but conversely, Brian, and all of the special young people that we know, also make an indelible mark in the lives of the people who know and love them. There is truly nothing like these relationships; you only have to spend a little time to see how life-changing and beautiful they really are…

If I were ever to see this woman at the deli counter again, I’m not sure if I would still want to punch her out or continue our conversation. This time, though, I would definitely brag about Brian’s many wonderful virtues. In all honesty, she probably wouldn’t even remember meeting me or what she said. While today was a reminder of how painful it can be when someone makes an inaccurate judgment about my son, it was also an opportunity to remember the truth about Brian and “all that is RIGHT with him”! Precious gifts can be wrapped in a variety of ways and I am so glad for the treasure that is my beautiful boy. People who do not know Brian may make snap judgments about him that are based on impressions and not facts. That is one slippery slope that everyone should avoid. Please reserve your judgment until you get to know WHO my son is. I think you will be very pleasantly surprised when you discover exactly what he likes and what he is capable of. You will ultimately see that there are more similarities than differences. And that is TRUTH that can be taken to the bank (with exponential interest) for a lifetime!

Until we meet again, thanks for reading! 😊

One of the most precious gifts that I have received, because of Brian, are the friendships forged over the years with other special needs parents. Chances are, our paths would have never crossed otherwise, and it is because of these friends, that I am a wiser, more compassionate, and assertive individual, than during the “pre-Brian” days. I find great comfort and am often validated while listening to and sharing our children’s experiences with other special Moms. Our journeys can be isolating and lonely. While others outside of our special sphere can certainly empathize and be very supportive, there is nothing like another special Mom who “gets it”. And there is certainly a LOT that goes on!

I am always amazed how the same, yet very different, our disabled children are when speaking with other special Moms. These differences are primarily due to the specific nature of our kids disabilities, yet the behaviors, teen angst, favorite activities, etc. can be very similar. We special parents often experience the same concerns, emotions, hopes and dreams both for our kids and for ourselves as well. When Brian was first born, I was a thirsty sponge, drinking in as much information about Down syndrome ( then autism ) as possible, primarily via the written word, the Internet, and medical professionals. I didn’t want to miss any opportunity to help Brian in any way . In retrospect, I realize I was sometimes trying to ” fix” Brian in certain ways, instead of accepting him for who he was, disabilities and all. Such were the tempestuous forces of fear and despair that drove me in those early days…Yet to this day, I am still an information-seeker for my son to help him live his best life. The difference is now, I am driven by hope and belief of what is possible, whether things actually work out or not. Tomorrow is another day, not the final day that is written in stone, as I so often thought in the past. It was other special Mom friends, who over the years, helped me to arrive at this conclusion through their generous wisdom and support.

My grief held me back in those early days for a while before I was really ready to share with other special parents, so I had to start with the smallest of baby steps. Eventually, I was ready to connect with a small group of Moms via our early intervention home-based therapists through a monthly support group meeting at a local McDonalds, when Brian was just an infant. It was definitely awkward and difficult. I think each one of us were still trying to process our new realities, so the information exchange among us was rudimentary at best. I felt even more isolated during that time, especially after Brian’s open heart surgery, which kept us home for several weeks. There was definitely some postpartum depression thrown into the mix as well, so it clearly was not the best of times. Eventually, life changed again as it always does, with the help of a center-based early intervention program and a parent support group on the premises. The sun finally came back out, thank God!

I felt a real sense of relief that I was not alone in this second support group and that Brian was truly accepted for who he was. I also learned so much from both the social worker (who had her own daughter with special needs) as well as the other parents. What a blessing to get tips and referrals, from sneakers to doctors, and everything in between! Parents are always the best source of information and continue to be so, in my experience. The friendships that formed as a result of our kids, was just an extra bonus, although that is not always the case, but that’s OK. I really don’t need a gazillion friends, rather, just a close few ones. If you are fortunate enough to have even one true friend in this life, I believe you are very blessed!

Sometimes, the only thing that I have in common with another special parent is the fact that our children just happen to be disabled. If our children are sharing the same experience, our reactions to what is happening may be very different. Our beliefs may also differ in terms of what we feel is best for our children. Variety is the spice of life, and we can agree to disagree! I don’t know what’s best for your child and visa versa. Unfortunately, not all special parents are supportive of one another at times, whether justified or not, resulting in misunderstandings, hurt feelings, and broken relationships. Sometimes it’s for the best; other times it’s an opportunity to create a closer friendship. It’s a shame when a friendship does come to an end, but perhaps the original foundation of the friendship was never built on solid ground to begin with. There are seasons in life and always other fish in the sea. As I get older, I realize that how and with whom I spend my time with is very important. Free time is too minimal and life is way too short to spend it with people who do not support, love, and accept you and your special child for who they are.

It’s fascinating how children with the same dual diagnosis as Brian are very similar at first blush, yet so radically different when it comes to each child’s abilities. This is something I would have never guessed ” looking from the outside in” prior to Brian’s arrival. Just another misconception of special needs that I needed to learn in the beginning. I am always learning from our kids and the other special parents, everything from best behavior practices, to how to really unwind and speak my truth, often over a cup of coffee or a glass of wine. These are times I really look forward to! Sometimes the very best moments have been those when I just listen and not offer any advice, unless I’m asked. Sometimes a friend just wants to be heard and doesn’t expect a solution to their problem. I, too, sometimes just want to vent, cry, or laugh about something special needs related or not. In the end, each one of us are just seeking the love and solace of a good friend. I try to be the friend that I would like to have and am truly grateful for the friends I do have. They have enriched my life for the better and I hope I have done the same for them.

Until next time, thanks for reading! 😊