What has your experience with #Autism been so far?

I share my experience with raising 3 boys on the #Autism spectrum all the time. You all know what my experience has been but I don’t know what yours has been. So I thought I would ask. What has your experience with #Autism been like so far?

Has your experience been more positive than negative or the other way around? Do you have a good support system in place or are you in need of one?

I like to know about my readers and I don’t know if I don’t ask. Right? Right..

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MommyBeggiato

@KatrinaMoody @lost_and_tired #autism http://t.co/oSqdgIpr neuroprotek Dr Theoharides research

whiterose

I have one daughter on the spectrum. Morgan just turned 7 years old. She was diagnosed with classic autism. She fits all categories for the diagnose.  For us, it's been up and down and all around. Some days are good, some days not so much. Morgan has this tendency to have a huge distaste of clothing and shoes, so it's never a day without seeing Morgan walk into the kitchen butt naked and think nothing of it. We mostly laugh about it, but it tends to be embarrassing when you have guests. Even warning them can not compare to their shock when they find out we are telling the truth.  If I have to pinpoint the hardest part, it would be the lack of communication. Morgan doesn't talk. Her receptive skills are amazing, but her expressive is at about a 2 year old level. She has just started naming/labeling things. Her screams when we don't understand what she wants are heartbreaking as well. 
 
We recently relocated from SC to NY due to changes in my position at work and the move has been traumatizing for us all. She is without services, except for those provided by school. Getting her services has been a nightmare. It's not easy to navigate a system without support. Speaking of support, we have each other and my mother-in-law. I am grateful for my eldest daughter who assist with Morgan daily. She's 18 and pursuing a degree in Inclusive Education. You really just have to take it all in stride and live day by day. You also have to count your victories no matter how small they are. 
 

Lost and Tired

Thank you for sharing your experience. Hopefully someone reading is from the NY area and can help guide you.

vyrg13

@reality_autism try to find many way to build him as human being #optimistic every single breath#

Lost_and_Tired

@vyrg13 I always do 🙂 That's great advice through…..

vyrg13

@Lost_and_Tired thanks buddy, … Give my regards to your sons…

jjean3940

I have two little boys on the spectrum, Jack is 5 and Nate is 2.  Honestly, my head is still spinning at this point, I don't know if I could pinpoint positive or negative at this point.  They are SO different my boys, Jack has aspergers, is obsessed with many things and talks like a blue streak, Nate has virtually no language and shows almost no interest in anything.  We have had pretty good luck with services thus far through our county (Nate gets ABA 5 days a week), and we have been beyond blessed to find an amazing pediatrician who does way more than most general peds, but knows when to send us further up the food chain.  And she takes insurance.  I am blogging about my experiences myself these days- I can tell you relate- it is my therapy.  would love to hear your feedback, since you are way further down this path than I am! http://www.jackandnatesmom.blogspot.com

RebeccaMacDonald

 @jjean3940 Great blog!  And "Go the F*ck to Sleep" is a family favorite around here!  We have had 15 years of sleep deprivation!!

Amy

My son is 3.  We have no official diagnosis — we're on a waiting list to get an appointment to wait to be seen..  but every bit of the social worker in me tells me he's on the spectrum,  anybody who spends more than 20 minutes with him suspects it.     Some days are wonderful, many days I just want to scream. 
 
He attends a special needs preschool, although they can't offer him as many resources until he gets diagnosed, but he does get speech.   He gets the services we can with a "socially and emotionally developmentally delayed" diagnosis.  We went through 5 speech therapists before finding one who had seen anything close to his speech patterns.  He's also being evaluated for hearing loss..  9 appointments over the past 2 years and they still can't figure out exactly whats going on there.
 
As far as support, it's minimal.  My parents watch him once in a great while, but that generally offsets his schedule enough that it's more work for several days after he comes home.  Other than that it's just me.  The majority of the time I don't even consider my husband part of the support network.

lostandtired

I understand. Consistency is soooo important and when people are consistent, if feels like your better off on your own. Been there done that…..We actually thought our youngest, Emmett was deaf. He failed the hearing screening and we had even started learning and teaching him sign language. Turns out, he was autistic and simply phasing everyone out. 
 
Now he's doing much better. 
 
I wish you the very best of luck. Please keep us informed of what you learn. 🙂 Remember that no matter how you may feel, you aren't alone.

RebeccaMacDonald

Hi Rob, I have four kids on the spectrum and it's been quite an adventure.  It definitely has its ups and downs and I can more than relate to many of your experiences.  My kids, as you might imagine, are quite different from one another as far as gifts and challenges: my first is 15 with an diagnosis of Aspbergers and OCD, my second is 13 with ASD (verbal and fairly well functioning), my third is 9 and has ASD, is completely nonverbal, very clever and mischievous, and my fourth is also nonverbal and has an ASD diagnosis, and shows a huge aptitude for computers.  They are my life and of course make my life extremely chaotic and challenging, yet at the same time I would do it all over again.  
Our experiences with the public school system has been mostly a good one, with all of my kids starting out at the same school (my two oldest are now in middle and high school), where my two youngest still attend.  We have built a solid relationship with this school and they have a highly specialized autism program with a very strong parent/school connection.  There are monthly meetings/workshops for families, which have been very helpful.  This school has also been very supportive of my family in obtaining needed services such as obtaining one on one support for my children when needed (which, I might add, is not something the school system generally wants to pay for).  My oldest,  who has severe behavioral issues, has had a one on one aide since 3rd grade, and the team over there is working to get the same for my 9 year old, Aidan.  He has exhibited behaviors such as bolting and aggression toward others at times and is extremely fast an clever.  
We have recently been receiving at home services through a waiver program for my two youngest (it's for kids with ASD ages 3-9), but Aidan just aged out.  It is a very good program, but because his name came up on the waiting list only 2 months before his 9th birthday he got very limited services.  My youngest will get services for the next 3 years and her former teacher will be her direct support provider, so we are very excited about that.  
A teaching method that I have been using with Aidan called RPM has been really blowing me away, although we have had to take a break from it due to a lot of other things going on.  When my youngest is receiving her at home services I will be able to make more time to  work one on one with Aidan once again.  This method teaches kids on the spectrum how to communicate in order to learn age level academics (it is NOT in any way to be confused with Facilitated Communication, they are very different!), and when I was doing this daily with him his behaviors improved so dramatically that everyone around him noticed and asked what we were doing!  I think for the first time he felt as though he had some control and loved being able to communicate what he knows; at the same time I was in awe of all the things that he knew and simply couldn't communicate!  He has been bringing the books, paper and pencils to me lately that we use, so I know he really wants to get back to it.  I hope that it will decrease his frustration level and continue to provide him with the means to communicate.
Another tool that we have been using is the iPad, which he seems to like although I am still in the process of loading pictures so that he can use it as an added means of communication.  My youngest is very skilled with it, so I'm imagining that she will have no problem using it for communication as well.  My second oldest, Devlin, also loves the iPad (although he's verbal) for listening to music, so I think Aidan feels cool and big kid -like to using it, which makes it more motivating.
Well, this post is much longer than I had intended lol, but I guess it gave a pretty good idea of what some of our experiences are!  I follow your blog when I can and I think that you and your wife are amazingly loving and resilient people.  I have actually spoken to you a couple of times by email (I asked if you guys had Gavin tested for lead, and told you our experiences with it), and I thank you for sharing your life experiences.   You probably don't get much time to read, but I have a blog also, mamacat913.blogspot.com, which I someday hope to give more time to!  Take care and all the best to you guys!

lostandtired

 @RebeccaMacDonald I have read through your blog a bit. You should write more. 😛 I remember your email. We have Gavin very frequently checked for lead because of his issues and history with PICA. Everything is always okay. Thank God for small favors 🙂

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