Summertime is the season for sun, outdoor adventures, and long lazy days. It brings warm weather, swimming pools, an extended school year, and camps for kids. There are school forms, camp forms, forms for the doctor to sign, and a sense of urgency to register our children as soon as possible in order to avoid the dreaded “wait list” for these camps. Special children in particular can not be left to their own devices or have too much idle time. Many of our kids don’t know how to occupy themselves without a structured routine, which is why Summer school and camps are so important in filling those gaps. Brian is no exception to this and is most fortunate to participate in all of what the Summer has to offer. He has typically enjoyed all of his camp experiences- until recently.

I was looking forward to having Brian participate in a camp that he had attended in the past. He always seemed content both coming and going from this particular program, sans the initial “transition blues” that is typical Brian, especially on the first day, but then he would settle in. However, this year was different. Brian was not happy, not just on Day 1, but for the entire time he was at this camp. He “communicated” his displeasure by verbal protest and body language, but I honestly thought during those particular moments that he was just being a “teen with a tude”. I also thought there was never a problem at this camp before, so there was no reason not to send him. I had also arranged for Brian’s home behaviorist to come to camp and provide his counselor with support every day for 2 hours . This always worked out well for both the counselor and Brian in the past and I had no reason to believe it would be any different this year- but I was wrong.

While the behaviorist was there daily, Brian did participate in various camp activities, albeit briefly, preferring some more than others. Shockingly, he refused to go into the pool the first day, which is Brian’s favorite activity of all time! I should have known right then and there that something was wrong…The behaviorist was not there during pool time initially. The same thing happened again the following day- Brian did not want to go in the pool. The next day, the behaviorist was there during pool time, and Brian went in. Then the unthinkable happened- Brian had an accident in the pool. He hadn’t done that in years- I was truly shocked! I was also annoyed at myself for not “listening” more carefully when Brian was clearly communicating that he was unhappy. In retrospect, Brian did not want to get out of the car each morning and couldn’t wait to get into the car each afternoon. When my husband asked Brian how things went at the camp, ( which Jim mentioned by name) he whined and signed ” all done”. I am so sorry that I didn’t “get it” sooner in the week: it makes me so sad that I let Brian down. I honestly didn’t realize exactly how much Brian understood of what he didn’t like and attributed everything to adolescence and transition difficulties. It is moments exactly like these when I wish my son could speak and tell me what is bothering him.. It is also a stark reminder of how dependent we are on others to help us help Brian and how we always will be.. This very thought makes me both scared and grateful at the same time.

No one knows better than Jim and I how many and complex Brian’s needs are. Which is why Brian needs his own personal counselor at camp. I am also aware of how difficult it must be for a camp counselor to be placed with a multiply- disabled camper they have never worked with before. Which is also why I arrange for a behaviorist to “train” the counselor for a few hours each day. I’m not sure what more I could have done. I do also wonder whether the camp application that I painstakingly filled out was really looked at. Or how carefully were Brian’s needs considered before he was assigned a counselor?

It is obvious that there was a communication breakdown between home and camp. It also appeared that the counselor was overwhelmed by Brian, but didn’t want to say so. I felt like I had to “pull out” information daily as to what was going on. Thank goodness the behaviorist was there for a few hours each day and I was able to learn things that way. It was finally revealed that one morning Brian sat for a significant period of time doing nothing because he refused to move, despite the daily mentoring from the behaviorist. That was the last straw for me- he won’t be going back to this particular camp again.

I wish this camp experience had been a more positive one for Brian. It should have been, considering all the planning, time, and resources that went into it. I had also hoped that the line of communication between home and camp would have been more direct, consistent, and transparent. Although this was not the case, perhaps the silver lining was that Brian did clearly express his displeasure, the most I’ve ever seen him do, and I will make sure to take it more seriously next time. Maybe the camp was not equipped to manage Brian’s needs this year- if that was the case, they should not have accepted him into their program. I will never know exactly why Brian was so unhappy at camp this time, but what I do know is that some things in life are meant to reach their natural conclusion, regardless of the reasons. I believe this camp experience qualifies as one of those instances.

I may reach out to the camp with my concerns, just as an FYI, but haven’t determined exactly when. I’m sure I will be inspired to do so at the right time; I’m just not quite ready…In the meantime, there is still a Summer to be enjoyed and savored, which is exactly what Brian plans to do- especially in the pool! 🌊 🌊

Until next time…thanks for reading! 😊

As our nation celebrates 243 years of independence today, I am reminded of how truly blessed Americans are in many ways and for many reasons. Now mind you, there is always room for improvements, for wherever you have human beings, you will have human problems. The United States certainly has its share of challenges to overcome in many areas. Yet, despite the numerous problems , there are conversely as many resources that make America the envy of most countries.

Millions of people continue to seek citizenship in America because of economic and religious opportunities , the very same freedoms that our forefathers fought for and that we have the privilege of enjoying today. Americans often take these freedoms for granted; we sometimes forget that most places in the world do not have democratic governments, free speech, religious freedom, economic opportunities, or natural resources. Despite the frustrations and hardships that Americans face, I still would never want to live anywhere else in the world! As a matter of fact, I did live in Europe for a period of time and had the opportunity to travel outside of the United States on several occasions. It was fascinating and fun to learn about different cultures in various places. While living and exploring a host of countries was both very intriguing and exciting, ultimately, there was “no place like home”!

Another reason why I am grateful to live in America is because of the resources that are available for disabled individuals. Compared to other nations, the United States is light years ahead. Similar to health care, socialist governments ration their special needs services resulting in waiting lists for its citizens. Some countries have no resources at all. Special education is certainly not equitable throughout the United States, or within individual states for that matter, but, there continues to be change for the better, as painstakingly slow as it can be. Nevertheless, I’m still glad that Brian was born here. There are opportunities for him to learn and experience a much better quality of life compared to anywhere else. I am so grateful that Brian has “life, liberty”, and can “pursue happiness” with support from both family and the community.

Patriotic pride was instilled in me by my parents who both emigrated to America from Ireland in the 1950s. They were very grateful for the opportunity to be sponsored by relatives upon their arrival to New Jersey. Mom and Dad worked very hard in order to provide a good life for our family and were extremely proud to be American citizens. They also believed in giving back and were very active both in their church and local community. Mom and Dad made America their home and taught my siblings and I to be appreciative of what we had, to be hardworking, and respectful. My parents would be the first to say how blessed they were to pursue a life in America that included long term economic and religious freedom, something that would have been virtually impossible as Catholics in their native Northern Ireland.

As we celebrate the 4th of July with family and friends , may we be mindful of our blessings as American citizens and the sacrifices of those who have made such gifts possible. Nothing worthwhile usually comes easy; we know this only too well as special needs parents. It is often a difficult road and our children’s progress can be so slow at times. I can definitely relate to literally “watching the grass grow” with Brian and am often discouraged by it. I’m sure our forefathers felt the same way while fighting against the British, but their long-suffering perseverance payed off in victorious independence! It is an example of the enduring human spirit, despite the numerous obstacles, and NEVER giving up! That sounds just like a typical day in the life of a special needs family, doesn’t it? Our forefathers would be so proud! 😊

Happy 4th of July! God Bless America! Until we meet again, thanks for reading. 😊 🇺🇸 🇺🇸 🇺🇸 🇺🇸