Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

3 Bumps

For moms with child/children with disability

do you feel that too much precious time is spent being a therapist, advocate, teacher?
i know, will do everthing to help your childs path an easier journey
BUT
sometimes i think that i am being robbed of simple MOM TIME

have tryed to be present, be mom more, and try to think therapy only in the back of my mind, but this Summer is hard to do that, with no special education, and still on the endless waiting list for autism services

have filled out all paperwork to get help, fight the IEP to get as much as possible during school year, even wrote grant proposals for ABA (got one!), read all i can, change diet, make her world one she can function in while allowing some situations at the time we can work on them

so much time fighting system, being advocate and therapist
my mom time is being taken from me

does anyone feel like this
am i alone in this thought

 
fiatpax

Asked by fiatpax at 8:36 AM on Jul. 14, 2011 in General Parenting

Level 46 (221,467 Credits)
This question is closed.
Answers (11)
  • It is all part of being the best mom you can be. You are putting your child's needs above your own need to "just be mom", and that takes energy, determination, and her best interest to be in your heart. What you are doing is making her life easier, more complete, and fulfilling.
    Mom-2-3-Girlz

    Answer by Mom-2-3-Girlz at 8:54 AM on Jul. 14, 2011

  • YES! You are not alone. My 13 yo has autism and I don't feel that way much anymore because he understand his routines, schedules, and does most of them without thinking but I remember when we were still "navigating the water" and setting everything up. I also have our state's medicaid waiver program (was on the waiting list for 4 years) which provides a one on one worker for him 40 hours/week during the summer. But it was hard getting here. When he was having a tantrum in a store one time another kind mom touched my shoulder and said it would get better when he was around 8 - and it did! Things are easier, but I do still have to make up a schedule every night for him to follow the next day. During the school year, he's okay without a schedule for the 4-5 hours between afterschool and bedtime, but all day he gets anxious without one because he doesn't know what to do.
    missanc

    Answer by missanc at 8:51 AM on Jul. 14, 2011

  • Wow. Your child is lucky for having such dedicated mom. All the things you are doing is considered good parenting when you have a child with a disability. I wanted to ask you if your child is getting biomedical intervention? You seem to have everything together!
    Cafemomoftwo217

    Answer by Cafemomoftwo217 at 8:50 AM on Jul. 14, 2011

  • As the mother of two autistic children, I found that my helping them WAS my "mom time" with them. When they were workign with their therapists is when I would take some time for me, and then when I was with them, I worked with them on the skills the therapists worked on with them, but I tried to make it fun buy incorporating "play time" into their skills practice between therapy sessions.

    For example: To work on basic words and sounds, I took them to a petting zoo = fun! To work on sensory issues, we played in the backyard with sprinklers and bubbles = fun! To learn rules and responsibilities we got a dog = fun!

    I KNOW it's hard, and a few years ago I would NEVER have believed it, but my boys are now 9 and 7 and are catching up to their typical peers! So, keep doing what you're doing, be her advocate, trust your gut instincts, remember to breathe and take care of yourself! :o)
    LoriKeet

    Answer by LoriKeet at 9:16 AM on Jul. 14, 2011

  • in my experience, with autism, most of the time unless they have had a traumatic experience, they can be fairly adaptable,if u meet them half way. one boy i used to look after couldnt handle crowds or visual overstimulation but he really wanted to help me do the groceries. so i went at the least busy time of day(around 10am) and made the experience fun. they tend to take cues from thier"safe" person and will relax the more u show them it is not a negative experience, just different. take your time when u got places, we did have one incident that time, and he knocked over a crate of avocados because not thinking i said i didnt like them. when he did this, i removed as much visual stimulation as poss by turning him towards the wall and firmly wrapping my arms around him to prevent self harm and provide comfort. i asked him why he did knocked over the advocados and he said because they were mean to his best friend cont......
    06Lilraysmom

    Answer by 06Lilraysmom at 12:11 PM on Jul. 14, 2011

  • and thats not allowed! i eventually clicked and realised that because i said i didnt like them, he took that as he would, because they had upset me. was pretty cute tbh,,,,,
    as for the wanting mom time, i applaud u for wanting MORE time with ur girl. I worked with a 6 year old girl who had retts syndrome. nonverbal but could let u know what she wanted! I would get her up, give her breakfast get her dressed do hair and get ready for school while her mom sat outside with coffee and ciggarette talking on phone. at night i would come back, do physio, walking, bath, blowdry hair give her dinner have cuddles and book and then into bed while mom sat on internet and dad on playstation. i found this very strange that what I call quality time moments were spent with me. i enjoyed it alot, but if she was mine those are the things id want to do, not a carer. getting respite is important. even moms need to recharge batteries :)
    06Lilraysmom

    Answer by 06Lilraysmom at 12:19 PM on Jul. 14, 2011

  • and thats not allowed! i eventually clicked and realised that because i said i didnt like them, he took that as he would, because they had upset me. was pretty cute tbh,,,,,
    as for the wanting mom time, i applaud u for wanting MORE time with ur girl. I worked with a 6 year old girl who had retts syndrome. nonverbal but could let u know what she wanted! I would get her up, give her breakfast get her dressed do hair and get ready for school while her mom sat outside with coffee and ciggarette talking on phone. at night i would come back, do physio, walking, bath, blowdry hair give her dinner have cuddles and book and then into bed while mom sat on internet and dad on playstation. i found this very strange that what I call quality time moments were spent with me. i enjoyed it alot, but if she was mine those are the things id want to do, not a carer. getting respite is important. even moms need to recharge batteries :)
    06Lilraysmom

    Answer by 06Lilraysmom at 12:21 PM on Jul. 14, 2011

  • how well does ur daughter comunnicate? sometimes starting small with rewards(choclate bikkies and mandarins was my boys choice!) such as ice cream or whatever she chooses shows her its positiveand overpraise and not growl if it doesnt go to plan. i try to turn every activity into learning, what is that? what does it do?what colour? what do you think you can use that for? reassurance is key also, my boys quite often will be comforted with an encouraging smile, sometimes a distraction cuddle. if she likes quiet, what about librar yat a quite time to choose bed time stories?gradually get her used to new surroundings and people. its hard work, but I ASSURE you, this will make for a more balanced and easy child along the road.try and see things from their view, using their logic. make it a game maybe.
    06Lilraysmom

    Answer by 06Lilraysmom at 1:09 PM on Jul. 14, 2011

  • biomedical intervention
    i have taken out or she never has had
    lake dyes(=this was huge difference), BHA, BHT, MSG, TBHQ, artifical sweetners
    she is still a carb and fruit juice craver
    no insurance coverage for autism anything (on waiting list for autism waiver) but when this ever comes through - do not think it will cover a DAN doctor, and no funds to pay for DAN out of pocket
    have read many diet books, at this point feel i am at stand still on this, as next step is blood work and doctors guide to change diet more, do not feel i can think of chelation without medical supervising

    she is only 4 next week, thanks for telling me that it gets a bit easier with age of child, hope i can keep this up
    her father snapped and is out of picture, i now live with my mother, who is sweet- signs of elderly issues, and i find i care for her more and more-she is not getting any younger...well that is another question about elder care
    fiatpax

    Comment by fiatpax (original poster) at 9:05 AM on Jul. 14, 2011

  • there is not time for me, me time is getting a shower
    last time i went out for dinner was last december with friends for two beers and shared appetisers

    my parenting wish is that i could do the same simple things that other moms get to do with their children
    going to store, musuem, zoo, waterpark, anywhere public is very hard for her
    she has autism issues with sounds, visual stimulation over load, crowds are overwhelming etc etc etc
    a resturant-forget it
    hates getting wet, bought her a little blow up pool, she will meltdown if a drop of water gets on her

    LOL neighbor (who knows of her issues, and i have told her of water issue) this neighbor says yesterday - you should take her to the water park - it would be fun...
    FUN? having my daughter meltdown at public pool because water gets on her - yes! i think i waterpark sounds FUN!?
    grrrr!

    just want a simple life, a life others can take for granted-everyday stu
    fiatpax

    Comment by fiatpax (original poster) at 11:12 AM on Jul. 14, 2011