Emotional insight into the lives of a special needs family


As promised, here’s the video blog from last night.  It may be a bit redundant because of the post I did earlier today but I really think it’s important to watch this because it really gives you insight into the life of a special needs family. 

The video is longer, so please bare with it.  Think of it as an episode of your favorite show, only this is about something very serious and can help spread awareness. 
I’ve never really shown this type of emotion publicly and I’m not sure how people are going to take this.  However, I basically give you a huge window into our life.  Some will appreciate this for what it is and others will dismiss it.  All I can say is that I hope it conveys the gravity of what we are faced with. 

I’m also thinking about doing this in a regular basis and work out a better setup, in order to make it a bit easier to watch.  I’m thinking maybe once a week for now and see how it goes. 

It’s one thing to read someone’s written thoughts and it’s another thing to here them spoken with the emotion they were intended to be shared with. 

https://www.youtube.com/watch?v=HsRQptEZ3xE


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AllisonPWendell

Rob, god bless you and your family. I have two sons, now adults with autism, and I can so relate to some of your struggles.  I am blessed that they are healthy and that the only issue we had to deal with when they were growing up is the AUTISM.  Our lives were always measured, schedules, planning all things to the nth detail. But that was what we needed to do to provide a structured environment for them and one for our non-autistic son.  Ive considered moving to a warmer state, but honestly NY is a state that has so many resources and programs for children with Autism that I just can’t see myself moving right now. If you can’t find the help and services you need in your state, perhaps relocating to an area that you have access to home care services….I don’t know if that’s a realistic option for you….My prayers to you and your brave wife for your hard work. I pray it gets easier!.

lostandtired

AllisonPWendell It’s so nice to meet you. Thanks for blue kinds words and support. I appreciate it.
🙂

Suelindhorst

I could so relate to what you were saying about trying to balance the needs of one with the needs of many.  However, you have a potentially life threatening condition with Gavin.  Have you thought about a skilled nursing facility in the short term for Gavin or bringing in a nurses aid or nurse to your parents home?  I believe if your doctor recommends it you can get some coverage for that.  I have come to realize that these situations don’t have a win-win option so as parents we need to do the best we can and know in our hearts that that is all we can do.  The Serenity Prayer is my mantra.  Acceptance is the key but it doesn’t come easily.  I’m still working on it myself. Is your community supportive?  Perhaps family and friends could have a fundraiser for you and/or a volunteer sign up sheet to babysit while you get some chores done?  Your family is in my thoughts.

lostandtired

@Suelindhorst well said, thank you. We are working with the limited local resources to address these very needs. It’s a process filled with red tape and delays. We meet again on Friday and I’m going to push and expedite the process.

TrishMorrin

Hi Rob. I Love your family. You have my support. Can the hospitals, governments someone offer you some in home help for Gavin, An extra person in the house to help you,I tell you if I lived there, I would be there helping, cleaning, baby sitting whatever it took to help you guys. I live half a world away and I find it very frustrating. Please hang in there, you and Lizzie, something good will come your way. You are amazing people. Thinking of you always. Trish.

lostandtired

TrishMorrin that’s always a possibility but there aren’t much in the way of help around these parts.

MicheleChaney

I don’t know if this will help but have you considered a food/water schedule with timers? My other thought is I know you want to keep him at home but you have a lot more stressors and distractions in your home…compared to Liz’s parents? Would they be able to keep a closer eye on him? He won’t be triggers by his brothers to be more active or share food, etc…I know when I have one kid at home vs. all of them it is a lot more calm and less chaos. Maybe by talking everyday and keeping a journal of activities and problems, food intake, etc…so everyone is on the same page and knows all info…could even be through e-mail, messaging etc.. Regardless, I will pray that you find a solution that works as best as possible for everyone. My thoughts and prayers are with you.

MicheleChaney

Also, vent away and don’t feel guilty, you need it!

StephanieBrewerCrosslin

Rob and Liz, my prayers are with your family.

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