Parent’s LIFE Stories
A famous quote from a popular song reads, “They say you never know what you got till it’s gone” but for our 11-year-old son, Brigham, who has been enrolled at Lauren’s Institute for Education (L.I.F.E) for the past year, we’ve changed those lyrics to read; “We never knew how good it could be, till what we had was gone!”
Brigham was born with Down syndrome and was diagnosed with Autism at age four. It seemed as if his disabilities grew along with his body and the more pronounced the disability the more we grew dispirited about his future; it looked darker and darker. He had been in the public school system since age seven. During those years we believed the public school system was adequate, but it was all we knew. However, in the last three years we found the public schools to be increasingly lacking in understanding and willingness to help Brigham with his specific needs.
It was just one short year ago when we sat down with Brigham’s educational team to assess the ending school year and set goals for the coming year when it became clear that “What we had, wasn’t good enough—there had to be something better.” We found that the school had not been working to meet Brigham’s current goals, and what’s worse, the goals they set for the upcoming year were goals he had surpassed three and four years earlier. The teacher, the staff and therapists weren’t even aware that Brigham knew his colors, basic numbers or most of the alphabet—in short, after years inside that public school system they didn’t know my son at all.
It was at this point we started searching for alternatives and found L.I.F.E. We enrolled Brigham for the summer program and within days we knew we had found something special; after six weeks we were convinced that this is where Brigham needed to be. His affect changed immediately; he was happier and excited to go to school, something we hadn’t seen in a very long time. We’ve also found that we were happier and in one year we’ve realized that L.I.F.E isn’t just something that happens to our son from 8:30 AM to 4:00 PM on weekdays.
One of the most impressive things about L.I.F.E. is the business approach they use to solve problems. Once a problem is identified they work tirelessly to find solutions, secure necessary resources and communicate and apply the solution uniformly to all appropriate staff, therapists and parents. We recently attended a team meeting for Brigham with over 15 employees in attendance; for the first time in 8 years attending these kinds of meetings, we became part of the team. Staff members asked us questions about our son, “What had we tried?” “What had worked, what hadn’t?” and so on. Every
staff member seemed genuinely interested in learning more about Brigham in order to help find solutions! This team was professional, solutions oriented, resourceful and most important, they truly knew our son and were personally and professionally invested in helping our him to succeed.
As a direct result of Brigham’s enrollment for the last year at L.I.F.E., we’ve seen incredible growth including the following: he’s more mobile (he will walk longer distances), he’s beginning to independently interact and communicate on a social level, his vocabulary is increasing, and he is trying and eating new foods. Brigham has been to several movies (in the theatre) and even the Ice Capades (an unbelievable feat). One of the biggest changes currently impacting our lives for the better is the work that has been done to help Brigham potty train. We had serious doubts that Brigham would ever be trained and now, thanks to Jessica and Kelly who work with Brigham in the classroom, he’s making great progress and for the first time in his life, we can see the end of pull-ups in sight!
Our experience at L.I.F.E. has been nothing short of spectacular. We truly didn’t know how good Brigham’s life could be until we found L.I.F.E. His frustration level is down and his level of happiness is soaring. Because of L.I.F.E. we’re hoping and dreaming again about Brigham’s future. L.I.F.E. got us back into life!
As I was thinking back in retrospect, I was able to identify three fundamental areas where L.I.F.E.’s impact has been truly immeasurable. Each of them being critical to how my husband and I perceived the help our daughter Joy so desperately needed.Today I will be discussing how the terms Perception, Proactive, and Intervention each took on a whole new meaning.
Two years ago on April 1st, my sweet and beautiful daughter was diagnosed as being on the autism spectrum. This news devastated my family and shook the foundation of our family unlike anything we previously experienced. Feelings of anger, guilt, blame, depression, panic, shame, denial, confusion, anxiety, filled my mind and body daily for the first year. My response was a normal reaction to grieving over my child’s diagnosis and the damper it had placed on the expectations of a bright future for my daughter. However, I knew I needed a reality check in order to realign any expectations I had for my daughter and our current circumstances which we found to be much easier said than done. It required a drastic change in PERCEPTION immediately. My perception quickly shifted from fear to HOPE that God placed this child in my life because He trusted my abilities and most of all my love for her, and I BELIEVED in Joy’s strength and desire to fulfill her purpose in life. Studies have shown that the parent or caregiver’s outlook greatly impacts the progress of an autistic child. Having a negative outlook only makes things more difficult and inherently can only hinder the child’s progress. Parents may lack motivation, feel resentful towards the child, or may simply feel burnt out. However, one’s PERCEPTION directly impacts one’s reactions. The more optimistic and positive a parent’s outlook is the lower level of stress experienced and in turn the more driven and focused they can be and creates a healthier state of mind for the parent to be PROACTIVE in their child’s progress.
Which brings me to PROACTIVE. It is essential for parents and/or caregivers to be PROACTIVE and not react to their emotional state. Autistic children are very sensitive and keen to others emotional states and energy which can produce negative behaviors. Therefore, parents need to focus on the goal and not the whirlwind of emotions they are currently feeling. The one thought I kept in my mind and still do is that I get to leave the room and feel confident that I can use my judgment to navigate through life’s journey, but as for Joy, she has to live in her mind and body for the rest of her life so if I do not do my best in helping her improve then it can only increase the amount of adversity she will experience throughout her life, which in essence will create more challenges for myself and my family dynamic. Parents need to research, seek guidance, advocate for their child, and most of all apply the various treatments and tools consistently. LIFE provides their families with the necessary tools and preparedness to help our children, but the parents need to proactively apply their recommendations at home in a consistent manner to impact their child’s development.
This approach will ultimately evolve into something I like to call orchestrated INTERVENTION. Recent research and studies have shown that it is essential to get these children plugged in as early as possible in appropriate therapies, early schooling, in addition to, extra emphasis and attention placed on the child’s diet as well as nutritional supplements. A child’s brain is rapidly developing from birth to the age of 5 so it is crucial to begin Early Intervention during this time.
So to put this all into PERSPECTIVE, what did Joy’s life look like before LIFE?
- Several daily crying meltdowns lasting from 30-60 minutes each
- Severe and constant constipation which meant having to use glycerine suppositories
- Aggressive behaviors
- Minimal verbal communication if any
- Little to no eye contact
- Restless sleeping patterns
- Severe sensory issues leading to the inability to brush her teeth without sensory overload,
- Tip toeing the majority of the day
- Poor coordination – could not run without falling, throw a ball, or ride a tricycle,
Leaving the home with Joy would be a daily challenge and struggle. For example, at times Joy would become overly stimulated at Target resulting in random severe meltdowns lasting an hour. Employees, store security and strangers would just gawk awkwardly. Another example, as early as 6 months old, Joy would scream hysterically when any one would try to interact with her, even extended family which led to nothing but isolation for the first 3 years of her life.
Fast forward to today, Joy has had no meltdowns in the last 4-5 months, regular bowel movements, no aggressive behaviors, greatly improved eye contact, is able to communicate her thoughts, sleeps through the night, sensory issues have been more mild so taking care of her basic living needs has improved, she can be a KID and do things like throwing and kicking a ball, run without falling, and ride a tricycle. My husband and I have been able to enjoy our life together once again. Joy’s true personality has slowly begun to emerge and I must say it is an amazing feeling as a parent to finally get to know your child. Joy is adventurous, loving, creative, thoughtful, and loves to laugh. It is because of LIFE, I am able to rest my heart, knowing Joy is in a safe environment while we are apart. Our time apart has given me time to gather myself and begin healing the wounds in my heart from this all consuming family disorder, so when we are together again, I have the energy, drive and motivation to help my precious Joy.
LIFE provides these children with the stability and routine that they require to function at their best in a family centered facility where love, respect and valuing each individual as they are not what they “should” be. What makes LIFE successful is tending to the needs of these children and coordinating their therapeutic services all under one roof. Autistic children get overly stimulated and drained quickly so by eliminating the hassle of driving all around town to receive treatment and trying to make them comfortable at each setting, LIFE has created an all inclusive environment with the state of the art treatments. LIFE has become a part of my life.
To provide an example of LIFE’s genuine love for these children, my daughter just turned five last month and their ABA department threw Joy a birthday party. This event meant a lot to me because we have no family here in AZ and socializing has been difficult due to her diagnosis so for Joy to feel a sense of belonging and love from her friends at LIFE left me forever grateful.
Through Early Intervention orchestrated by her amazing clinical team at LIFE, a proper diet, a personalized nutritional supplement regime, and unconditional love from her family and friends including those at LIFE it has given my Joy the ability to begin breaking down the walls from within. I am here today to share that there is HOPE, but it requires changing one’s PERCEPTION, being PROACTIVE, and orchestrating the INTERVENTION necessary is critical when treating our children.
Once again, I would like to thank you all for being compelled to assist these children who have no voice and rely on those that truly listen. Your assistance provides our children with the most up to date treatment available, which LIFE constantly pursues. I would also like to congratulate LIFE for expanding their services to the adult population. This is another demonstration of their passion to help this population. Lauren’s Institute For Education’s goal is to bring hope, guidance, and appropriate therapies to each individual child so that they may also have an opportunity to fulfill their purpose and dreams.