Autistic son has recieved more diagnosis I do not know how to handle this without being selfish PLEASE HELP ME?

I love my son with all my heart and soul. He is my number one priority and mental and physical being is key but he is becoming progressively worse and I am just seeing so many doctors it is a full time job for me to be on the phone with dr's amd taking him to appointments.

He is 11yrs old and diagnosed with Asperger's, PDD-NOS, Adhd, Intermittent Explosive Disorder, Anxiety, and compulsive behavior disorder. I mean my poor child deals with so much daily yet so do I. It is costly, time consuming and i feel like i have exhausted my resources so if you know of any books or websites or blogs or organizations PLEASE let me know

What is your experience, how have you handled it, how do you interact with your child, what behavioral techniques do you use when they become unruly and aggressive. I am so lost

I recently had a miscarriage at 3 months, I am hormonally out of control, emotional, run down, going to school after several years and coming to terms with life in general any advice and support would help me

Thank you

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  • 7 years ago
    Favorite Answer

    Oh, I SO understand. My 11 year old was recently diagnosed with intermittent explosive disorder as well, at the last trip to the hospital we made where he threw all the plates on the ground and used the broken shards to stab himself and me. That's in place of their former diagnosis which was psychotic disorder NOS. He is also diagnosed with moderate-severe autism, and is only marginally verbal. And my older son is severely autistic and non-verbal. So I know. I really do. What the hell.

    I'm finding it really depressing because my 11 year old used to be my gentle child. Interestingly, my 14 year old went through a very violent phase starting at around 12 too, and now he's a lot better, so I'm wondering if maybe it is to do with age? I hope so!

    First, money. It is insane how expensive autism is. Absolute insanity. I read the other they estimate it costs over $1.5mil to raise an autistic child to 18 years, and of course if your child is severe, you paying for it a lot longer than until 18. (Oh, and I have two of them). I'm in BC, Canada so I don't know about programs elsewhere, but we do get money from the government and there are charities that you might be eligible for (e.g: http://www.autismsupportdogs.org/ ). The only thing to do is google, google, google, and ask other parents in your area what financial aid is available. It's not enough, but there should be some...

    What do I do? Well, we have schedules and social stories and all that. We use PECS and sign language (although with Asperger's I suppose you don't have the same communication problems we do). We have a service dog, who helps SO MUCH. My son would probably be dead without the service dog. My 14 year old is medicated for behaviour. My 11 year is currently not, but we are exploring the options. They are both in special ed. I find that occupational therapy and special sports (soccer and swimming) help my 11 year old who is my hyper kid.

    Also, I agree with trying diet. We haven't had a tonne of success with changing diets, however, I have found limiting dairy for my 11 year old has helped a bit (not that much unfortunately).

    Now books... if you're looking for stories, I liked:

    George and Sam by Charlotte Moore

    Making Peace with Autism by Susan Senator

    Running with Walker by Robert Hughes

    A Will of His Own by Kelly Harland

    Postcards from the Road Less Traveled by Ellen Notbohm

    The Golden Hat by Kate Winslet

    If you're looking for ideas...

    http://www.autisminspiration.com/

    http://www.positivelyautism.com/free/

    Creative Therapy by Janet Tubbs

    When Babies Read by Audra Jenson

    Autism: The Inside Out Approach by Donna Williams

    AND OF COURSE "ENGAGING AUTISM" by my all-time hero and favourite human being (okay maybe that's an exaggeration) Dr. Stanley Greenspan.

    For things to watch...I liked

    The Autism Puzzle (BBC)

    A Mother's Courage

    Horse Boy (I am totally not into Shamans anything weird like that, but this movie is actually very inspiring even if you're not a Shaman believer, which I'm not)

    Autism the Musical (my kids have done a similar program and it is a great idea)

    It's hard. I still don't know. I'm not sure I will ever know. Good luck.

    Source(s): Mum to autistic boys and one with epilepsy and now IED
  • 7 years ago

    Look into getting respite care. I have a son on the Autism Spectrum and although I have never used respite care someone told me about it. It will give you a much needed break even if only for a couple hours once a week. It should be free. Call an agency in your community that provides respite care to find out more info. Try ARC or a similar agency for people with disabilities.

  • Anonymous
    7 years ago

    I don't have a child with Autism. I have heard from many families that I met at a gluten free store I use to own, that took dairy and gluten out of their diet and they had a lot of improvement. Maybe this could help your son. I hope you find help soon.

  • Anonymous
    7 years ago

    "Dancing with Max" by Emily Colson is a beautiful story of a single mom and her autistic son. The author also shares her story on a podcast that you can listen to here: http://tinyurl.com/qjh59xc

    I know that sometimes it can feel this way, but taking care of yourself isn't selfish - it's healthy and necessary, so that you can provide the best care for your son.

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