I sincerely feel like I am losing me to my sons autism.  I left my job as a teacher to stay home and help my son progress. Thankfully, me being home has done just that he has sincerely progressed a remarkable amount he talks up to the 2 year old standards, asks questions, plays appropriately most of the time, acts appropriately with kids his age (although he gets to close some time)a nd needless to say I should be over joyed....and I am. BUT part of me is just getting lost.  I spent a minimum of thirteen hours a week involved in his therapy ABA, Speech, OT, Socialization you name it I am part of it. I am his "person" so I can diffuse situations, explain his feelings, and communicate for him if people can only half figure out what he wants. My husband tried to help but he just doesn't totally get it. He doesn't get down on his level when speaing to him, changes his tone to anger when shawn has done something wrong, and basically gets upset when I am upset (when I need someone to take over and give me a break). It is even harder socially. Finally, for the most part I can take Shawn to stores without tantrums, screaming, crying, and just issues. Most day we can go out with other kids BUT MANY parents just don't get it and, as I said in a prevoious blog, just go off the handle without even trying to imagine what it's like in my shoes. I would pay anything, give up anything, just for Shawn to be "Normal" to be able to understand how to ALWAYS play like any other child his age not just for me but for him too. The tears and diappointment becasue of basic kid issues would blow any NT parent's mind and the need to turn lights on and off ALL day and WHERE EVER you go would make you want to cry. None the less, I carry on with my head high praiaing my son for being him, for learning words, playing nice, HUGGING and NOT HITTING other kids.  As he progresses  I put every ounce of my being into helping him reach "NT" status if at all possible I lose more and more of me. I had Shawn at 22 years old and YES he was planned my husband and I wanted him badly. We agreed I'd go back to work after a year or so which i did but Shawn simply could not handle me not being there. We thought he would adjust as "most kids do" our pediatrician told us" but he never did and after 9 months of teaching I left my job. Now I am pregnant again and although I am thrilled beyond words (we suffered 2 losses) I am scared I'll never find me again and never have a career I love again. I am also scared my new baby will also be autistic as well. I worked so hard to get to where I wanted and now it seems like I am just home or in therapy all day every day. I have not gotten a day off from bedtime, therapy, or anything in literally over two years. My breaks come at night when I am folding laundry, cleaning, or preparing tomorrows therapy session. I no longer grade papers or read a book. I understand that being a parents has and always will be work I just want others to understand being a stay at home mom, especially to a special needs child, is more work than one could possibly imagine and for many autism parents you NEVER get a HUG, NEVER hear "I love you" and NEVER get a smile. so as much as I rant please comnsider this when your NT child does something typical like a play date......many of us struggle just to get our kids to say "hi".

 

There is no greater love than that of a mother and her child!!

 

Steph

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Comments:

mcque...
Nov. 20, 2008 at 1:37 PM

hugs

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Polkmom
Nov. 20, 2008 at 9:30 PM

Although it's extremely difficult and challenging for us most of the time.  We must try to keep in mind that we are the best thing that could ever have  happened to our child.  It's because of the many, many, many selfless sacrifices that we make on a daily basis that has brought your Shawn and my Sean to the levels they are at now. I have manydays where I'm feeling overwhelmed and alone.  I just want to scream "why me? " I find myself weaping and asking God to please help me and give me the strength and courage to make it through another day. During the process of quitting my job as a nurse to focus on him, my husband walked out on us after 10 yrs. of marriage.  He was in denial and confused about  something being wrong with our son.  He'd say, "he's gonna be alright, he'll grow out of it, you're overreacting"... well, now he sees how immediate and positive the changes are in our son and he's regretful that he walked out on his family.  We have several troubled areas in our marriage but, this was the straw that broke the camel's back for him. Unfortunately, he was unwilling to make the necessary sacrifice for Sean, but I was and I'm proud of that.  I know that as hard as things get, and as lonely as it feels up here, my reward will be GREAT later on, as time and my son progress.  I have a desire to return to the work force at least part-time, as long as it doesn't conflict with my kid's schedule, but that's very difficult to find around here.I miss having meaningful conversations with friends, going out for coffee or dinner, and being financially stable.  Everyday of my life is centered around my children, and that can be exhausting if you never get a break.  Breaks are extremely rare for me so I know how you're feeling. Between the kids, never ending housework, errands,etc... there's no time for me.  I've gained 40 lbs. since this began 1 yr. ago and can't seem to fit in time to exercise & get back in shape but, that's another story. I don't know if sharing this helps you but, it confirms that yet again  we have alot in common. Lets continue to encourage one another through this journey.  Keep your head up and smile. 

Shalanda

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lausta
Dec. 4, 2008 at 4:35 AM

xoxoxoxo I'm sorry people don't understand. You are doing such a great job!

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