Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

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Meet the Lost and Tired Family

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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]

Permanent link to this article: http://www.lostandtired.com/about/meet-the-lost-and-tired-family/

26 comments
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Chelseaxxxx
Chelseaxxxx like.author.displayName 1 Like

My name is Chelsea , i was looking online for things about attachment disorder and it brought up your  video's .... My partners adopted little boy is supposdly suppose to have Attachment disorder but my partner Paula is and has been for the last couple of years been fighting for them to assess him for autism and aspergers but they will not because they say he is adopted it automatically means he has Attachment disorder .... Her little boy Has so many Characteristics that your little boy has ... if you dont mind , I Will be keeping this site and looking regularly for any updates you may put ... We are in the uk  and here children have to go to Cahm's . . . . but they never see ben , just paula and myself sometimes .... its taken 2 years for a childs pshcologist to see him .. the Uk are not very equipt or reluctant to give us any help 🙁 .... You have adorable children , and beneath it all we can see your a very close loving family .

xxxx

daretofly11
daretofly11 like.author.displayName 1 Like

look into the book the primal wound

 

FragileXdad
FragileXdad like.author.displayName 1 Like

After reading your article "A heart shattered by a glimpse into autism" on CNN I had to check out your site. Have your children or your wife been tested for Fragile X? Having three children on the spectrum would be one heck of a coincidence with no genetic explanation. Fragile X Syndrome, if you do not know, is the leading known genetic cause of autism. If you would like more information please contact me or visit www.fragilex.org or www.fraxa.org

This comment has been deleted

kat13
kat13

You little one sounds just like mine. Hearing testing was done multiple times on her and it was really hard to test a child that completely ignores you. ASL was also a way of communicating with her at the early age (before verbal communication stated to pick up eventually). By the way, a picture schedule of the day activities was super helpful to bring the anxiety down and lowered that spontaneous aggression to some degree! You may want to try that with him. And we had been working on the aggression issues with her for a while, years and years. She is a pretty strong for a girl when she punches, but can't twist the cap off the water bottles (still). 

lostandtired
lostandtired

 @kat13 Thank you for sharing that. 🙂

siara79
siara79 like.author.displayName 1 Like

Rob, I only met you the one time, but I'm glad to see how supportive you are of Lizze.  She and I have been friends for a long time, and I miss her.  So.. pass along a big hug from me, okay? 🙂 - Dani

This comment has been deleted

lostandtired
lostandtired

Nice to speak with you again. Lizze is my best friend in the entire world and I would do anything for her. I'm so grateful for having friends like you. 😉

 

 

This comment has been deleted

Lea614
Lea614

Your family is great. God bless you all...and pray for me too! 🙂

 

My daughter has entered adolescence (Asperger's), and I am spazzzing out every other day. She melts down about...her hair, her clothes, her weight, her lack of popularity (hmmm), her likes, her dislikes etc. and when her menstral cycle comes....I'm just....lost and tired.

 

You would think I was a pro at this since we have been doing this now for fourteen years. I think that girls on the spectrum are a bit different than boys.

 

Lea

lostandtired
lostandtired

 @Lea614 Thank you so much for introducing yourself. Glad to meet you.

Sue

Thank you for sharing your story! Your family is truly an inspiration. My son was diagnosed with Autism last October. He will be 4 in June. He is the sweetest boy who loves to sing and is always smiling. Our biggest struggle with him is eating. He has been refusing food more often now and is only eating 3 or 4 things. It's incredibly frustrating and also scary because we worry about his health. Thankfully we are able to get vitamins in his juice but hoping to find some way to introduce new foods to him. I'm praying for your kids and also for your wife and the struggles she is going through. Wishing you all the best!

Marie

How do you get your kids to sit like a pretzel and sit on their hands??? I cannot even speak to my daughter during her meltdowns as it only makes her escalate. Her meltdowns last for hours. I need ideas to help keep her from harming herself. We've tried advice from every type of professional in our area. The only thing that works is Medications which are now causing a heart condition. So I'm taking her off meds but need to have a good plan to manage her meltdowns. Please advise!!!

Lost_and_Tired
Lost_and_Tired

I feel you pain and understand your frustration. Getting Gavin to sit like a pretzel and on his hands took a great deal of work. However, most of Gavin's meltdowns are a willful act, meaning he has control. If he didn't, I'm not sure how well it would go. Nothing works for everyone. I might suggest that you post the question in the Autism Help Forums, as someone may have an idea that could help. Www.lostandtired.com/autismhelp

Nadine

Rob, your story about running across Tim in the snow made me cry. We also have 3 autistic boys, and the thought of one of them being on the streets after we're gone is heart-breaking.

NicolaT1965
NicolaT1965

Your family sound wonderful, your sons stories are wonderful. I am just at the beginning of this journey into Autism, my 3 y o son is just undergoing a diagnosis and now needs further assessment to see if he is Aspergers or HFA. I too dont have any support or family to speak of, its just my husband and i and our three children. Days are hard, nights are harder! I hope your son gets the most out of his Netbook that some kind angel has sent him, what a fantastic person he is to reach out to you like that. I have been looking into an Ipad for my son as we have been told howe great they are, my son is like a 3 y o math genius it is quite incredible, and he has taught himself how to read. Why oh why are the things that would greatly help my child so bloomin expensive. I hope that your family continue to be strong and that you get the help they all need with their current helath issues. Much love to you all from a Mum who kind of understands and is struggling with her own journey.

John Nguyen

I also have netbook if Gavin doesn't have one yet. It's a Dell Inspiron mini 1012, perfect for his size. It already has Office 2007 installed so he's good to go with those wonderful stories. Please let me know how I can ship it to you. John

Lost_and_Tired
Lost_and_Tired

John, If you could send me an email at [email protected], I'll humbly provide you with a shipping address. 🙂 Thank you very much Rob

Greg Martin
Greg Martin

Could I donate a PC or Laptop for Gavin ? Or have y'all got one already ? I'm a side line Tech guy and I get a lot of off lease stuff..

Lost_and_Tired
Lost_and_Tired

That would be amazing... I don't know what to say. He would get a lot of use out of a laptop.. Thank you so much...

Elizabeth A Carter

God is so good! I was reading this about an hour and fifteen minutes ago and was wishing I could find a way to get a laptop for your son. I said a prayer that I could find someone to help. I don't know Greg Martin, but God answers our prayers in His own way! May you be blessed Greg and you, too, Rob!!

Ema like.author.displayName 1 Like

I love your blog. You and your family's strength and perseverance is very encouraging. You are ALL in my prayers! God bless.

Darlene Buckingham

Hi: After looking at your cite see your children as special rather than the labels the psychiatric profession has assigned your children. HAve you researched how the psychiatric profession is over diagnosing and pumping out pills? Also the spiritual aspects of autistic children are advanced. They know this world is toxic and are suffering from the stupidity of our present system. My mom was autistic and I found the key to autism is that their sensitivity should be listened to as they are right on. If something is bothering them it is harmful for humanity - they feel it first like the canary. Also autistic children have to know they are useful and are helping. We treat them as if they are ill and they are more intelligent and aware of the huge damage we are doing to our spirits by the way we are living now in the material world. Any spiritual knowledge is helpful when dealing with autism. When I grew up with my mom I thought she was sick now I know the world is sick and have learned how to be a shaman. This is what helped me the most. Exploring shamanism might help. Essential oils are helpful with autism but make sure when using them the experience is pleasant as I am sure you know that autistic children remember differently than we do! All the best. You are blessed to have 3 beautiful sons who will teach you more about life than mainstream. We are living in a tainted world. Your sons may be your salvation. PEace.

Ginger Kenney
Ginger Kenney

Hi Rob, I found this column through your post that made it to CNN today.I've shared the link because what happened to you is something that all of us need to pay attention to. More than one of us has undoubtedly had a similar experience...how have we responded though? I work for a company that has a music based auditory training program that is very helpful for many, including children on the spectrum. Emmett in particular struck me as a child that could do well with it. The company is Advanced Brain Technologies (www.advancedbrain.com) and the auditory training program is called The Listening Program. or TLP. We've just released a new version specialized to those with auditory or sensory sensitivities, TLP Spectrum too.

Maria Hill

Hi. I am touched by your story. I have a website for HSP's which includes Ayurveda and have a link for you about a family who were able to help their autistic son through Ayurveda, which I use and it is very effective. http://www.rediff.com/news/2004/jul/21spec1.htm I also see that your whole family has other health challenges. I heard from a health practitioner the other day who said that many of her patients who are ill have been found to have allergies or built up toxins in their bodies which cause them to be sick. This may be the case for you. The best detox I have found is from http://www.lifespa.com. They practice Ayurveda and could advise you on how Ayurveda could improve you families health and save you financially and otherwise. All the best, Maria My recent post Why We Cop Out

mom of 3

Hi. Your struggles are similar. my husband and I also married sept. 2003 (accept on the 6th and not 3rd) our oldest has autism and youngest has CP. I, like your wife, have Fibromyalgia, but also had IC (interstial cystitis), crohns disease, diabeties, lyme disease and had PDD (post pardum depression) after having my kids, agoraphobia (since 2nd child), had a TBI (traumatic brain injury) and have been in the hospital 4x in 1 yr. I just had a bone marrow biopsy last wed. and will find out the results in 1 1/2 wks. We have no family in this state. The last time my husbands parents came to visit was 6 1/2 yrs ago and when my parents came they stayed somewhere 1 1/2 hrs. away and hardly came to visit and during their stay I was in the hospital and my health was very serious and my parents never drove the 1 1/2hrs. during the 8 days I was hosp. to come see me. yes it hurt quite a bit!! I am not sure if you have family support but if you do cherish that and be grateful for that!!

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