Walking that mile in our shoes.......




Lately, I am reminded again and again of how autism is perceived. The handsome teenager with autism who takes the popular girl in school to prom or the cute girl with autism who is the best barista in town.  These examples are nothing like my reality with autism.
 So please, allow me to tell you how we experience autism, here in our home.

My son Timothy is 7 years old.  He carries a diagnosis of autism spectrum disorder.  His last IQ testing had him in the bottom 1% of his peers.

                                                                             This is our autism.


 Timothy is locked in his room at night for safety via child safety doorknobs due to wandering and lack of danger. Its certainly not how I want it but for now it keeps him safe.  Several 911 calls and nervous breakdowns on my part have dictated it to be so.

                                                                            This is our autism.

He is finally toilet trained as of this spring in the daytime, still wears a brief at night due to nighttime bed wetting....wait, he will not sleep in a bed....floor wetting?  Do you know how hard it is to find diapers to fit a 7 year old who weighs 70 lbs?  How expensive?

                                                                             This is our autism.

Timothy has difficulties riding in my vehicle and often becomes aggressive to his sisters, pulling their hair and smacking them. He will kick at the windows.  He will throw objects at his sisters and myself (the driver) if given the opportunity.  He has grabbed my hair several times while driving.  Talk about multi-tasking!

                                                                             This is our autism.

Our household revolves around Timothy.  His behaviour can make or break the day.  If he is distressed or upset, we all feel it.  When he smiles, it feels like the sun is shining down on our faces and in our hearts.  We truly just want him to be happy.

                                                                            This is our autism.

I don't recall the last time we went out to eat as a family.  We can't.  We have never bowled, been to a movie, gone to church, a ball game or the aquarium together.  Timothy can't yet tolerate it.  I'm not sure if he ever will but still cling to the hope that one day we will have these experiences, that he will.

                                                                           This is our autism.

One day I will have to face the fact that Timothy won't be able to live with us anymore. Emotionally I'm still in denial but with every passing day it comes closer to becoming reality.  My family won't be a family without him.  My heart, broken.  I pray that he won't feel abandoned and that perhaps he will find happiness.

                                                                          This is our autism. 

We eat, breathe and sleep our autism.  We cry, we love, we celebrate our autism and we mourn it.  I don't know how to be anything else BUT a special needs mama.  I love my son.  I do not love his autism.  It takes, it twists, it distorts and it hurts.
 


                                                                This is our autism.

I hope that somebody out there reading this can find comfort  in knowing they are not alone....that there are others out there living similar lives with their own version of Timothy.  Their own autism.
Let's share some stories about our different experiences and shine the light on the other side of autism.  The one that isn't always so pretty but is a reality for so many of us.

Love Trish
 

 






14 comments:

  1. This is really an excellent blog as well as its content.CA

    ReplyDelete
    Replies
    1. Hi everyone, I'm so excited.
      My ex-boyfriend is back after a breakup,I’m extremely happy that will are living together again.
      My name is Mary Wilkie from England.
      My boyfriend of a 4yr just broke up with me and am 30 weeks pregnant.I have cried my self to sleep most of the nights and don’t seem to concentrate during lectures sometimes I stay awake almost all night thinking about him and start to cry all over again.Because of this I end up not having energy for my next day’s classes ,my attendance has dropped and am always in uni and on time.Generally he is a very nice guy ,he ended it because he said we were arguing a lot and not getting along.He is right we’ve been arguing during the pregnancy a lot .After the break up I kept ringing him and telling him I will change.I am in love with this guy and he is the best guy I have ever been with.I’m still hurt and in disbelief when he said he didn’t have any romantic feelings towards me anymore that hurt me faster than a lethal syringe.He texts me now and then mainly to check up on how am doing with the pregnancy,he is supportive with it but it’s not fair on me, him texting me as I just want to grieve the pain and not have any stress due to the pregnancy.i was really upset and i needed help, so i searched for help online and I came across a website that suggested that Dr Unity can help solve marital problems, restore broken relationships and so on. So, I felt I should give him a try. I contacted him and he told me what to do and i did it then he did a spell for me. 28 hours later, my bf came to me and apologized for the wrongs he did and promise never to do it again. Ever since then, everything has returned back to normal. I and my bf are living together happily again.. All thanks to Dr Unity. If you have any problem contact Dr.Unity now and i guarantee you that he will help you.Email him at: Unityspelltemple@gmail.com ,you can also call him or add him on whats-app: +2348071622464 ,His website: http://unityspelltemple.yolasite.com .

      Delete
  2. Nice information you have share. I really like this stuff! i will bookmark it for my future purpose. Find more details on
    Cheap online flight booking in India and Cheap online flight booking in Nagpur also Online flight booking in Nagpur .

    ReplyDelete
  3. You're right. Everyone's experience with autism is different. Some embrace it and wouldn't "cure" it for anything because it's part of who they are. Others hate it, and would cure yesterday because they can't stand the struggles they or their child face.

    As all good moms do, you will do the best you can until you can't. Whenever the times comes that it no longer works and you need to change things, remember that 7, or 8, 10 or 12 years is a LOT of years of love, patience and understanding that many parents can't or don't give to their kids on the spectrum that you have and will have given your son.

    ReplyDelete
  4. I here you we have an 11 year old who is on the severe end of the spectrum its a hard thing! ((Hugs))

    ReplyDelete
  5. Really feel you. Lots of similar things here. The car rides...ahhhhh, yes...

    Minecraft on the iPad has saved my life I must admit. My son's behavior has even started to improve - less aggressive when he's not seeking things to keep him occupied. I know it sounds wild. We spend time together with him playing this too.

    ReplyDelete
  6. I've had so many exact experiences, we prefer to stay at home than go out, we developed this technique which we usually plan our trips, where to go and what to eat. Eventually, he became used to it. Now, my son is 9 and has lesser tantrums and meltdowns, we can now eat happily in a restaurant as long as he can eat his favorite food. We lessen the sweets and juice drinks, we now give him "kangen" water or just tap water. it's been an amazing journey for us, giving us tremendous patience. Everything will be alright at some point, we will all find that moment.

    ReplyDelete
  7. I want to thank you for sharing your story, and Timothy. My daughter Piper was diagnosed with autism this year, at 3. It's a real comfort to know that there are other mothers who understand that every moment of every day is truly the unexpected. Late at night, when everyone else is sleeping, I am thinking of her future. This is the exact reason why I blog about our journey, as well. I truly appreciate what you are kind enough to share so candidly. Drivingthestrugglebus.WordPress.com

    ReplyDelete
  8. I want to thank you for sharing your story, and Timothy. My daughter Piper was diagnosed with autism this year, at 3. It's a real comfort to know that there are other mothers who understand that every moment of every day is truly the unexpected. Late at night, when everyone else is sleeping, I am thinking of her future. This is the exact reason why I blog about our journey, as well. I truly appreciate what you are kind enough to share so candidly. Drivingthestrugglebus.WordPress.com

    ReplyDelete
  9. I just stumbled upon your blog and I wanted to know it really helped me this am. My son is 3 and has autism. I absolutely hate it but love my son with all my heart. He also has beautiful bright eyes that melt our heart. My husband deals with it much better than I, I raised two exceptional successful daughters and decided to have another child with my new husband. I didn't sign up for this and am very resentful, wondering why didn't we just leave it alone and why did we decide to have a child, on some days. Most days I am ok, until I have him in a situation with other typical kids and it is just so obvious to me how different he is and how locked inside himself he is. It is the absolute most difficult thing I have ever had to deal with, and I've had a lot in my life..
    Thank you for your blog.

    ReplyDelete
  10. Hi
    I dont have a child with autism but I am a teacher and this blog really helps understand autism. Be strong
    Love from the other side of the world x

    ReplyDelete
  11. Hi
    I dont have a child with autism but I am a teacher and this blog really helps understand autism. Be strong
    Love from the other side of the world x

    ReplyDelete
  12. What else can i say rather than to thank Doctor Osemu who God used to reunite my marriage. Each day of my life, i ask God to bless Dr. Osemu for he has made my life complete by bringing back my husband to me and for this reason, i made a vow to my self that i will testify on the internet to let the world know that Dr. Osemu is a God on Earth. My husband and i had a fight for three days which led to our divorce. On this faithful day, i came across a testimony of how Dr. Osemu helped a lady in getting back her lover. So, i contacted him and explained to him and he told me that my days of sorrows are over that my husband will come back to me within 12 to 16 hours for he's going to prepare a spell for me. Could you believe it, my husband came home begging that he needs me back. Do you need any kind of help? Contact him now via email: ( Doctorokpamenspelltemple@hotmail.com ), Website: http://doctorokpamenpowerfulspelltemple.webs.com, call and whats App him via +2348135254384 OR for more confirmation call or text me on my cell# +1 (914) 517-3229. Becky Nolan USA.

    ReplyDelete
  13. Thank you for your miracle Doctor Osemu Okpamen

    This article is dedicated to the Doctor Osemu Okpamen. I have been married with my wife for 5 years and recently she broke up with me and it hurt me deeply when she told me to leave her alone and that she does not love me anymore when i was always faithful and honest to her. I tried all the ways to get her back buying her what she wants like i always did and she still left me heart broken and she even has a new boyfriend which destroyed me even more until a friend of mine from high school directed me to this genuine spell Doctor called Osemu Okpamen. This man changed my life completely. I followed everything he told me to do and my wife came back begging for me back. I was stunned everything happened exactly like he told me. I had faith in everything he told me and everything was true. Also he was there every moment until i got my happiness back and he also provides spells that cures impotence, bareness, diseases such as HIV/AID E.T.C You can contact him via email at { Doctorokpamenspelltemple@yahoo.com } or visit his website http://www.doctorokpamenspells.com. He will help you in anything you need and quick to answer once you contact him or call me for more info +1 (914)-517-3229.

    ReplyDelete