My Story

Our beautiful little son was diagnosed with autism in December 2007 at a little over two-years-old. It was as if one day we were all doing great, and then the next day we were in turmoil. When he was 22-months-old, over a period of about three weeks, we watched him change before our very eyes. There were a few little signs along the way as we look back on it, but there was very little indication there was something wrong until he just began to regress.

Learning about autism was confusing. So many websites and books talked about how it was “devastating, incurable, and lifelong–with no cause or cure.” Those aren’t words that bring hope to a parent. The doctors weren’t very helpful either. The examples of autistic kids seemed extreme. “That isn’t Josiah. It has to be something else,” we said. Well, there’s a spectrum and autism affects kids in different ways from mild to extreme. I started reading everything I could and got my hands on information that would bring hope: early intervention through a therapy called ABA and Applied Verbal Analysis, a changed diet and biomedical treatment to get our child’s immune repaired and heavy metals removed. I’m hearing that there really is hope, and we’re going after it with everything we’ve got.

 But, my real hope is in God, who I am putting my trust and faith in to bring healing and wholeness to my son. I will do everything I can do, and I’m praying for God to do what only he can do for our son’s future. In this blog, I will tell our story, our struggles, useful information, and hopefully hope to give strength to those who need it who are faced with a diagnosis of autism and don’t know what to do with those emotions.

 

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13 Responses

  1. I just wanted to tell you how much I enjoyed reading your story in the recent issue of the Source and looking through your blog site (and your husband’s). I was married in 2007 to a man that had children from a previous marriage.

    My 9 year old step-son (Brett) has autism. In this past year my step-son has come to live with my husband and me full-time and I have taken a very active role in his education and healthcare. I am trying very hard to get educated and learn all that I can about ASD.

    I have never been married before and I don’t have any children of my own so this new chapter in my life has proved to be challenging to say the least.

    My son’s biological mother is bipolar and refuses any therapy or treatment for her condition and therefore is unable and unwilling to care for and provide for Brett’s needs. My husband did the best he could in the years following his divorce, but being a single father working full-time nights and caring for a son with special needs, while living in rural Wisconsin where program resources and services for special needs are limited, was very difficult.

    The way that we were brought together as a family was completely God’s doing. We can see his hand in every step. At first, I had absolutely no interest at all in getting involved in a relationship that seemed so complicated.

    The Lord softened and changed my heart toward my husband and his children. I believe that this little boy needed a mom and God brought me to this place to be the mom that he needed. He brought me to be the wife, the parther, that my husband needed. I know that this is my purpose and I am enjoying every moment.

    Some days I feel completely overwhelmed and like I’ve gotten in way over my head. But other times I have so much joy and it is so rewarding and I am thankful for being given such an amazing gift and opportunity.

    My husband gave his life to the Lord shortly before we were married and we’ve grown so much together as a couple and as a family with God’s help. Together, with God at the center, we are building an amazing marriage, family, and giving our son the love, support and foundation in faith to help him succeed in life.

    We want to do all that we can for him and give him every opportunity that we can and then leave the rest up to the Lord and trust in Him to take care the son he has given us.

    It is challening being a step-parent and coming into this child’s life at the age of 9 and getting up to speed on what I need to know about what his needs are and about what resources are available to us. I find the suggested books and other link to various resources helpful. Thank you for sharing!

  2. Thanks, Amber! I admire your compassion and courage to be a mom to this young boy. Even though some kids with ASD can’t express their love quite like typical people do, they know love and they feel love. So speak life and peace and calm and stability into his life. Pray over that little guy. Pray with him. Pray for him. Bring joy to his life. I don’t have experience to draw from for older kids with ASD, but I’ve done a lot of research on things that can be done to help and improve their outcome. If I can be any sort of a resource to you, please contact me at tahni.cullen@hotmail.com. Even if all you need is some support or someone to talk with as you walk through this.

  3. there are many resources put together by autistic people, that you might find helpful.

    Fair Warning: many of them are staunchly anti-cure, and some use rather harsh words against people who are (those who have been known to be very closed minded. Like Jenny McCarthy and others.)

    I encourage you to check out some of those links. One blog in particular, which I link to in my blogroll, is written by a nonverbal autistic woman a couple of years older than I (I’m 24). She links to many other resources.

    Another good resource is a blog called Respectful Insolence, which I also link to. The author, a surgeon/scientist who’s nom de blog is Orac, writes extensively about autism-related mythology (claims that certain therapies work, when no evidence has been shown that they do work.)

    Many claims of cures are unscientific, and there is a real risk that by allowing children to be exposed to such therapies, more harm will be done, than just letting the children be autistic without trying to cure. That does NOT mean doing nothing, however. There are alternative means of communication besides speech that can be used, either temporarily or permanently if the child is unable to grasp the use of speech. There are picture boards. Start very simply and let the child set the pace for therapy. Some autistic children do very well when they are gently prodded to do more (Temple Grandin was one such child) and others have more trouble when they are prodded (Donna Williams was one such child)

    I highly recommend at least looking into some of my links, and checking out books by those two authors.

    T. Grandin: Emergence, Labelled Autistic and “Thinking in Pictures and Other Reports on My Life With Autism’

    D. Williams: Nobody Nowhere and Somebody Somewhere (she wrote two other autobiographical works but I can’t remember their names at the moment)

    her website is:

    http://www.donnawilliams.net

    Peace

    The Integral

  4. My research shows that these kids are medically s ick. We have Josiah’s tests to prove allergies to dairy, yeast overgrowth, oxidative stress, etc. The treatments ARE safe–a lot safer than allowing kids to have starving minds and bodies without the nutrients they need. I made a commitment to find out what kids were recovering (there are thousands documented) and head in that direction, in conjunction with sound behavioral therapy. I’m learning that the philosophy about autism is a lot like religion and denominational divisions–lots of heated debates, “proof” on various sides. Respectfully, my personal account is that my son has only improved on biomedical treatments. “Cures” aren’t what we’re touting, but recovery is possible.

  5. Thanks hopingnotcoping for your positive and well-researched insight. My 4 1/2 year old son is very close to losing his ASD diagnosis after 2 1/2 years of biomedical treatments. I wholeheartedly agree – If you look at the kids who are actually RECOVERING and not merely managing their autism, the evidence for biomedical treatments is compelling. Thank you for boldly spreading the word and helping others to have HOPE! You are a great encouragement! http://www.autismchangingtomorrow.wordpress.com

  6. Glad to stumble across your page last night. It is comforting to “meet” other people who share similar experience. My family and friends really try to understand, but don’t always totally “get it.” Planning to be back to read your blog again! 🙂

    Thanks for all of your positive thoughts!

  7. Hi Tahni, I met you in April at the Autism Yesterday screening on Roseville. I also have a son with ASD who is recovering. My family just began attending EBC in WBL. I was happy to see a familiar face in the Source and talked to a few members who know you. They mentioned there are groups formed of moms with ASD kids. I am interested in that. Do you have any ideas for me? You can e-mail me. BTW, great blog!!!

  8. Hi,
    I have been reading some of your blog and have found it very interesting. I am an Applied Psychology student in University College Cork in Ireland. I am currently undertaking a study on the experiences of parents/caregivers of autistic children. I would be very grateful if you could give me permission to use your blog as part of my research. It would be great if you could e-mail me. 107392303@student.ucc.ie.

    Thanks,
    Heather Mc Namara

  9. I justm join up for E-mail newsletters and I read this, I have a 30 month old Granddaughter and your story is one that is heartfelt, We also has her enrolled in special needs therapy school for kids with autism and also praying for Gods will to carry us through. But I also was very happy to hear about the therapy called ABA and Applied Verbai Analysis, I’ve never heard of those two but I will be checking into the services that is available in my City and State.
    Thanks for a very Educational Article
    Stanley Sanders
    Maple Grove,Mn.

  10. just found your beautiful blog… i can relate to so much you write. i have 4 girls, the oldest has severe autism (as well as severe cognitive impairments and an intractable seizure disorder). i can remember the early days after she was diagnosed so clearly. its such a journey!!

  11. Hi,
    I just read one of your comment on another blog. I thought I’d come and have a look around yours. I am an adult Aspie, I am also dyslexic.
    I lived unaware and just hid from life, I wore a mask and imitated to fit. When my Mom died my whole life was turned upside down. The one thing that keeps me strong is my relationship with God.
    I am also a Mom to two wonderful children one diagnosed with Autism and the other has Aspie traits. I believe we are all on a journey, we all need to learn to be and become who God created us to be.
    Love and hugs. xx 🙂

  12. Hi there! My name is Cameron Von St. James and I had a quick question for you & was wondering if you could please email me when you have a free moment. Thanks! I really hope to hear from you soon and appreciate you taking the time. ☺ cvonstjames AT gmail DOT com

  13. […] can we learn from those living with special needs? Listen as Jo talks with mother and advocate Tahni Cullen. Tahni’s son lives with autism, and she shares their journey of faith, the challenges, and the […]

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