The Foundation - Building Blocks of the Future

I get asked a lot "how do you do it?". I always assume they are addressing my having 3 boys, and I say that "I am very lucky to have been able to leave my full time job so that I could focus my efforts on raising my 3 boys". A few days ago though, I was asked the same question, but just felt the context of the question was different. They were asking, indirectly "how do you keep your sanity while managing your child who currently is dropping to the floor while simultaneously trying to run away, with a scream so high pitched the neighborhood dogs think they are being summoned to a party". And that's when I smiled, counted to ten, picked my boy up, told him "no" again, and said "with patience and perseverance".

The thing is, having a child with special needs is more rewarding than it is difficult. There are times when we think that we won't get through a certain phase (Potty Training for instance), or when we feel in our hearts how much harder raising C has been in comparison to the other 2, BUT... the joys that child has brought our family, the humor, and humility he shows us everyday, the life lessons he has taught us, are more valuable than any number of life experiences previous to having him.

What does the Future Hold? 

 

I always knew I wanted to be a mom. I wanted to be a great mom. I wanted to be the house that all the kids in the neighborhood had to come to. I wanted to be the confidant, the friend, the stern voice, when needed. I knew my destiny was motherhood. I have said so many times before, that "the diagnosis" was life changing. We had to go through the stages of grief, to realize that it wasn't just C's future that we no longer had a clear vision of, but our future as well. I think the hardest part has been long term planning, taking each day as it comes. I am a planner, and not knowing what life will look like in 15 years has been frustrating.

The thing is, none of us really know what our future holds. We have all asked, "what does that mean for my child's future?", but we can't really determine any of our children's future. We lay the foundation, but ultimately our children are the one's that pave the path to their own destiny. I always envisioned A as an engineer or architect. He can build intricate and extravagant creations from Lego's, he has always had the ability to do so. He, however, has always expressed interest in acting, directing. From the time he was a toddler, he would set his toys up on stage, and direct us on how to act, what to say. We thought it was just a phase... really, what 2 year old understands what actors do, and have interest in that field? Well he persisted, and despite my dreams of MIT, he has paved his own way, and wants to pursue acting. After 10 years of interest, it is our responsibility to help him go after his dream.

When we get "the diagnosis", we grieve the "what could have been", then we try to reinvent, "what will be". We focus our efforts on fostering our children's abilities, how to ensure a fulfilled life, while still balancing our personal dreams and goals. It repaves our future, and lays a new foundation for our way of life.

BUT... in those moments of reinvention, come moments of triumph, hope, light, laughter. There will be many bends in the road. There will be times where we aren't strong enough to go on our own. In those times, we will rely on our family, our friends, our own support network to help us build and rebuild our foundation and path. And in the meantime, we will continue to take each challenge in stride, we will cherish each of moments of triumph, no matter how great or small.

The Wanderer... continued

PAS - Public Alert System

After "The Wanderer" debuted, I had several parents approach me with similar concerns regarding their child and their own fears about their child wandering. It occurred to me that I took the suggestions of other mom's, and information from the AWAARE website, but hadn't done my due diligence in effectively researching our state and local law enforcement's protocol regarding eloped children with IDD (Intellectual/ Developmental Disability). So, I did some research. What I found was this:

1. The Amber Alert is only used if a child has been confirmed as “Abducted” and the Alert will only be used if there is proof that he/ she is “at risk of serious bodily harm or injury”. www.amberalert.gov
2. The Silver Alert in the state of Maryland is used “in instances of an adult, suffering certain cognitive impairments, has been reported missing.” The criteria dictates that the individual must be over the age of 60, have a cognitive disability, poses a threat to one’s health or safety, and is operating a motor vehicle. www.mdsp.org

Other states  have included individuals with intellectual or developmental disabilities in the Silver Alert System or their variation of the Public Alert System. 

After learning the above, I decided to take further action and call our State Senate Office to speak with Senator Joanne Benson, who serves on multiple committees, including Education, Health and Environmental Affairs Committee, Joint Committee on Children, Youth, and Families, and Joint Committee on Access to Mental Health Services. Though I was unable to speak directly with the Senator herself, I was able to find out from her aide that there is no pending legislation for a Public Alert System that will include people of all ages that have a diagnosis of IDD. I briefly introduced Kinera Foundation and expressed my personal concern that if my child were to go missing, statistically his chances of being found unharmed are slim, and that it would be a travesty to our community to have to endure a loss, in order for the issue to put on the forefront. She suggested that I speak with our local law enforcement agency directly and asked that I call her office back with the information I was given. 

So with a mission in mind, I set out to our local fire department. I was met by two young and enthusiastic firemen who wanted desperately to help, but could only tell me that if my child were to go missing, the Sheriff's Office and Maryland State Police would be dispatched. By happenstance, two state troopers happened to be eating lunch at the firehouse, and the young firemen were happy to pass me off to a better authority on the issue. To their credit, they did remain in the room, while I gave the unprepared uniformed officers the third degree. 

Here is what they told me:

There is currently no Public Alert System that includes individuals with IDD in the state of Maryland. If one of our loved ones were to go missing they urged me to call 911, even as quickly as within minutes of not being able to locate the missing party. When I questioned the advice to preemptively provide our local law enforcement and fire department with a current picture of our child with IDD, they indicated that while in theory it was a good idea, it was not realistic for them to retain in an accurate filing system all of the children in our community who may elope. What they did advise was to keep a current photo of our child in our possession, so that it can be disseminated to the search party quickly.

I then asked the "WH" questions... who would be dispatched when, what first responders would be made available. I reminded them that we live in an area surrounded by water, woods, farms, and main roads. If our child is missing and we call, first the Sheriff's Office will be dispatched to assess the situation, and make calls to other agencies. I questioned how they handled someone who likely would not respond to their name being called, may even consider it a game of Hide and Seek. In that instance, MDSP would likely call in the Police Service Dogs, to try to pick up and locate a scent. The officers briefly touched on the ability to track footprints, and any disturbances in the vegetation made by a human, and the ability of a dog to track a scent just by the skin particles that fall on leaves, grass, etc. as we pass through. I digress. They then indicated that if needed, they had the ability to dispatch helicopters to do overhead surveillance. And if there is fear that missing party has approached the water, the DNR and Coast Guard can be called upon. 

For their lunch being interrupted, and a crazed mom asking a million questions, with tears pricking the corners of their eyes, they were incredibly professional. They were concise and informed, however I still feel that our kids may need more. 

There is something to be said about being proactive vs. reactive, and in this particular case, it could be a matter of life or death. 

As I write this, my heart is pounding, and my imagination is running wild. We have installed the door and window alarms to further protect C from leaving the house without our knowledge, but it still happens. The alarms get turned off, we hear the alarm and in the time it takes to call out to see if the other parent is on it, C has already made it to the street. This is real, and it is scary, and we need a better plan. 

So friends, I am working on it. I spoke directly with Senator Benson and she agrees that to not address the need for those with IDD to be included in, or have their own Public Alert System in place, is to concede to tragedy. Stay tuned, I will continue to update as I learn more about what can be done. 

** Please take a moment to say a prayer for Avonte Oquendo. He has been missing for a week and there is a $70,000 reward, with help from Autism Speaks for his safe return to his family.

Instinct

A Mother's instinct is absolute, pure even. Somehow you just know when your child is stirring in the middle of the night, even before a sound comes out of the monitor. You know when your child is hurt, emotionally or physically before they even say a word. You have the amazing ability to distinguish one child's "mommy" voice from another.

C was born in the summer of 2008. It was completely uneventful. He was a scheduled C-section, because boy do our boys come out big. Unlike most birth stories, we just walked into the hospital and a few hours later we had a baby. No labor, no pushing, just joy.

C was a quiet baby. After 2 children who didn't sleep through the night (we still have issues with that), I was looking forward to a "good" baby. C even slept for 8 hours the second night in the hospital. He never cried, he just made an "ahhhhhhhh" sound, so softly you could barely hear him. Strange, I thought. All babies cry, don't they? But when I asked, I was advised to just be happy that I didn't have a screamer. And they were right, I had 2 other LOUD children, so having a quiet baby would be a nice change of pace.

Time went on, and C did everything at a later age than his brothers. Unlike our middle son, he had no interest in keeping up with the other kids. He was content to watch. He crawled at 9 months, walked at 16 months, and had a hand full of words by 2. When I confronted the doctors with my concerns, , they just ensured me that he was the product of "last baby syndrome". All of his milestones fell within the normal range. He was simply taking advantage of everyone doing everything for him.

We decided at 2 that it was time for baby boot camp. No more babying, this kid needed to talk, needed to get potty trained, needed to start engaging in activity with his brothers. For a full year we tried, unsuccessfully, and the longer we tried, the more "instinct" was whispering sweet nothings in my ear. "This child is not developing properly", "He should be talking by now", "Look at that 2 1/2 year old, he is having conversations, and can play games with the other kids".

I started to turn to friends with children, started to tell everyone I met that C was "special", slow, and that maybe there was something wrong. How should they have responded? "Your right, your kid has issues"? Of course not, they laughed, kidded with me, and assured me that each child develops at a different pace, and eventually he would catch up. All but one, a friend who was always honest. "Take him to the doctor, push for answers, if you think something is wrong, do something about it". She was right, but I was scared. I procrastinated. I wanted so desperately for someone to agree that C wasn't on the right developmental track, but was scared for what that would mean.

When I was in college, I worked at the YMCA. I will always, always remember my time there fondly. That one job taught me more about compassion, patience, and perseverance, than any other. While working there, we had 2 children enrolled in our after school program. We knew that they were developmentally behind,  but their parents' seemed to refuse our suggestion to have them evaluated for learning disabilities. Those poor children struggled to make friends, struggled to learn, struggled with what came naturally to other kids in their age group. If I ignored my instinct, would C become that child? Worse, would I become that parent?

I felt an overwhelming need to get answers, now. Little did I know that getting answers now would take months of testing, blood work, hearing evaluations, eye examinations, specialists, doctors... My poor child has anxiety just walking into the waiting room of a doctor's office now. Even when the appointment is not for him, he cries, runs to the door, and yells "good-bye, good-bye", in his sweet sing song voice. Who knew just how hard verifying a diagnosis would be, and if it is that hard to confirm what a doctor has already diagnosed, what are we in for next?

As parents we are our children's best advocate. I have been told this a million times by a million professionals. We can't live in fear of the unknown. The earlier a child is diagnosed, whether with Autism, ADHD, ED, ID, or any other syndrome, the better chance we have as parents to seek the appropriate therapies, treatments, plans that will help our children achieve their ultimate success. 

It is so hard to acknowledge imperfections in our children, whom in our eyes are perfect. With that said, seeking answers sooner rather than later, and having the courage to face your fears, will allow for more opportunities to better your child.