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Meet the Lost and Tired Family
From left to right: Maggie, Rob (me), Emmett, Lizze, Elliott and Gavin
Lizze
Lizze is my wife and the mother of my children. We were married on September 3, 2003. We met in April 2001. She is the single most amazing person I’ve ever met. She has been through more so far then most will go through in an entire lifetime. No matter how difficult things get she never quits. She loves blogging. You can find her blog here. You should check it out if you get a chance. Lizze LOVES to write and is EXTREMELY gifted in that department. She is a writer for the Cleveland Examiner and Mother’s Notes If you get a chance check out her articles. She gets paid based on how many people read her articles. Any little bit helps.
Lizze and Emmett John
Through all the pain and heartache that goes along with discovering your children are Autistic and the subsequent challenges that follow, she has been unwavering in her dedication to the kids and their future. She does all of this while in excruciating pain each and every day. Lizze is chronically ill. She was diagnosed with fibromyalgia about 6 years ago. It was an exhaustive process and took a few years but in the end she was diagnosed. She suffers from chronic daily migraines that don’t respond to medication, arthritis in her hands and other joints, acid reflux. In 2010 Lizze was diagnosed with hypersomnia which basically causes disabling daytime sleepiness and has no know cure. One of the truly amazing parts about her is that she never complains. Most of the time you wouldn’t even know anything was wrong because she puts on a smile and takes care of everyone else around her. As of 2011, she is facing even more challenges as her symptoms have continued to worsen. Currently walking has become a HUGE challenge for her. The migraines have become more severe then they were previously. Despite the difficulty walking and staying awake she gives us all she has each and every day.
We always joke that on paper we are completely incompatible. No one would have EVER put us together on purpose. Somehow our souls found each other and despite ALL we have working against us we persevere. She is my soul mate and my best friend. The truth is that I would be lost without her.
Gavin
Gavin is our 12 year old little man. He loves anything to do with Lego’s and Hot Wheels. He is extremely creative and loves his family very much.
Gavin was diagnosed with Aspergers back in 2005. Since that time he has been diagnosed with several other health/mental health challenges that impact his daily life. Some of the challenges Gavin faces include:
Autism (formally Aspergers)
Schizoaffective Disorder
PICA
Epilepsy
Dysautonomia
Primary Immunodeficiency
Degenerative Neurological Disorder (as yet unidentified)
PTSD
OCD
ADHD
Asthma
Reactive Attachment Disorder
Gavin has experienced continued regression since the age of 3 or 4. While is life is challenging, he never complains. We love him dearly and will continue to fight to help him.
One of the things that Gavin love to do is write. He has written several stories and we are working on getting him a laptop or netbook to he can better organize these stories and build his computer skills. Below are some of his stories.
Enjoy 🙂
Mario Party 9: The adventure through two places (Game/Story Book)
Part 1
[youtube]http://www.youtube.com/watch?v=bYrpW_irxHE[[/youtube]
Part 2
[youtube]http://www.youtube.com/watch?v=UvkKLRS14Rc[/youtube]
Elliott
Elliott Richard (ER) is our 5 year old miracle child. He survived a VERY complicated pregnancy and was born premature. Shortly after birth his left lung burst followed by his right lung. He then battled pneumonia. It was honestly the most helpless I have ever felt in my life. We were told to prepare for the “worst”, At one point he was almost life flighted to the Cleveland Clinic. He spent almost a month in the NICU but fought through it and came out the other side. He is now, ironically, the healthiest of all the kids. Elliott Richard is extremely advanced for his age.
Elliott Richard 5 years.
He was diagnosed as having Aspergers and is on the very high end of the spectrum. Elliott Richard is our “lady killing” social butterfly. He is mainstreamed and in preschool this year and is doing very well.
He loves animals and anything his big brother Gavin likes. He likes playing his Nintendo DSi and drawing in bed. He is a gentle soul and a very sweet and compassionate little boy. He struggles with anxiety and most likely has ADHD as well. Elliott Richard will be going through the Akron Children’s Hospital Autism Clinic in order for us to become more “Autism Aware” of him. We will get a better idea of what makes him tick and how we can help him with his struggles. Elliott Richard is a “big little” brother. Meaning he is a big brother to both Emmett John and Gavin.
He is always looking out for his brothers but takes a lot of abuse physically from Gavin and physically from Emmett John. We do everything in our power to help Elliott Richard along his journey and we are truly BLESSED to have him in our lives.
This video is a something I put together 4 years ago to celebrate Elliott making it to the 1 year mark. This was a tribute to the NICU that saved his life. I cry every single time……still. It often helps me keep perspective.
[youtube]http://www.youtube.com/watch?v=0SAtOEsH87Y[/youtube]
Emmett
Emmett John is our 2 1/2 year old little bundle of energy. Like Elliott Richard, Lizze’s pregnancy with Emmett John was VERY complicated. She spent almost the entire pregnancy on complete bed rest. Emmett John was born 1 month early. We were terrified because of our experience with Elliott Richard a few years prior. Emmett John was born on June 26th, 2008 and was healthy and we couldn’t have been happier and more thankful. Shortly after he arrived home he developed complications. He became severely jaundice and was on a wallaby blanket at home for months. He also began having periods of apnea or times when he would stop breathing. He was on a apnea monitor 24/7 for many months. Eventually it would be discovered that Emmett John was suffering from reflux so bad that it would stop his breathing.
I absolutely LOVE this picture
Once we made it through that we thought we were in the clear. Were we ever wrong. Emmett John was not hitting his milestones. He didn’t EVER respond to ANY sound. He also suffered from MANY ear infections, some that were resistant to antibiotics. We had his hearing tested and he failed. They told us that he was most likely “profoundly deaf”. He ended up having tubes put in his ears because of all the ear infections. After the surgery he still didn’t respond to sounds at all. Lizze and I started learning ASL. We had one final test to go before he was “officially” labled “profoundly deaf” and that was the ABR.
We went to Akron Children’s Hospital for that as we did do for everything. They administered the test. Lizze and I, as weird as it sounds, had prepared for and accepted that fact that Emmett John couldn’t hear. The question in my mind was to what extent and what are our options. Nothing and I mean NOTHING could have prepared us for what we learned that day. The audiologist came back with the results of the tests and informed us that his hearing is just fine. He just ins’t responding to anyone. Then the nurse looked at Lizze and told her that “this was good news, he’s most likely ONLY Autistic”. We new that this was always a possibility but had been convinced that he was simply unable to hear us. “ONLY Autistic”, I’ll never forget those words.
In the year that followed we made countless trips back and forth to Akron Children’s Hospital, sometimes 3 or 4 times a weeks. Eventually he was diagnosed as Autistic as well as having severe food allergies to milk, egg and lactose. Emmett John is on a VERY restrictive diet as a result. He hears and responds now but has little to no language skills. He is about 12 months delayed. Which puts him at a 25-30% deficit. We have employed EVERY possible form of early intervention including participation in a major study being conducted by Case Western Reserve University on new intervention techniques. All of these efforts, while totally worth it, have come as a result of great sacrifice.
Currently Emmett John has learned a few words and is adopting ASL as his primary form of “BASIC” communication. Emmett John is the most challenging of all our kids. He has frequent violent outbursts usually directed at Lizze and Elliott Richard. Gavin sometimes is becomes a target as well. Emmett John is completely exhausting on EVERY conceivable level but we love him completely and will never give up on him.
Here is some random Emmett John….
[youtube]http://www.youtube.com/watch?v=iJDgYNEG_1k[/youtube]
[youtube]http://www.youtube.com/watch?v=jCHErjFMu7g[/youtube]
