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  • I'm sometimes here

    Hi all, I know this is not necessary for me to be doing but I feel a little odd returning early March to then disappear again so feel that a little explanation necessary mostly because I'll be continuing this path for a while until things settle down. So it makes sense to explain myself and that way those that have been wondering where I am will know.

    Ok for those that don't know I have twin daughters and both of them are autistic they are aged 6 years old and one of them has now been diagnosed with what is called Precocious Puberty which means she is hitting puberty earlier than she should be. Lots of doctor's appointments and many tests to conclude exactly where she is on the scale of puberty I will get the results of those in the coming weeks, the first lot of tests for her are coming up on the 30th of this month. Not good for her as with being autistic she can't stand needles and reacts badly so it'll be a very stressful time and the worst is it has to be done intravenously as they need to take blood from her every 15 min.

    I have a 9 year old son with a Major eating disorder and though he's been under care with professionals since he was 3 no one has been able to help him so this coming Monday him, the girls and I are going to spend one week in Star Ship hospital in a special unit and he'll be monitored by psychiatrists and physiologists and a Neuro surgeon and pediatric doctors and I'm hoping they can get to the bottom of this eating disorder.

    Over the course of the past and the future my life is consumed with caring for my children and though I enjoy like the rest of the world a moments break my breaks don't come easy, sleep around here is miracle as with autistic kids they don't sleep well, there is always something going on and never enough time for me to have a little break even with respite care there is other jobs that need doing so the luxury of getting on a site such as this one is just that a luxury.

    I would love to be a member on a full time basis but reality is I can't so am what I'm going to call myself a fly by member lol fly in and out and when time does permit I will join in on the forum discussions and weekly challenges. I'd love to comment on everyone's layouts personally but afraid I can't do that as it's a time consuming process to individually comment on everyone. So for future layout postings know that you all inspire me and I'm always smiling when I'm viewing all of your works of art's

    I'm not complaining about not being able to be more active in here either please don't think my above comments are resentment towards my children as I love them all very very very much and I don't want to come off like a sorry complainer; I'm just trying to explain and express my situation so that when I'm suddenly vanishing all the time you all will know why now

    Last weekend **Easter Weekend** My oldest son and his girlfriend moved in with us, which just made life more busy and this house is very small and fitting in two more people making it a total of 7 is not an easy task but we have managed, the girls took well to there older brother moving in but aren't taking it well on other aspects of it due to them needing tight routines all this has upset the apple cart so to speak.

    Well that was a big post lol time to get the dinner cooked for the kids and for what it's worth Happy Belated Easter to you all big hugs all round
    sigpicShould I vanish my buddies are: Moonlightpearl, Carena and scrappyaggie48

  • #2
    So nice to hear from you again. Your life is so busy no one will hold it against you if you only come here from time to time. Priority to your children is totally normal. You are an outstanding mother like I told you with all that you are going through, I can only admire your courage and strength. Take care my friend.xoxoxo
    [/SIGPIC]

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    • #3
      Oceania:

      We are always so glad to hear from you. It must be so hard to cope with so much. I hope that you have alot of support from family and friends. Never be scared to ask for help just to give yourself a night out because you certainly deserve it. If I were closer I would give you and your husband a well deserved weekend by yourselves. So many times we do forget that we too need a break away. It is very clear to us just what a caring and loving mom you are. I wish the girls and your son luck with there doctor's appointments. Just know that we are here at any time if just to listen. Never feel that you are bothering us because it is just the opposite. This SBM family has helped me greatly when I just needed to vent or needed there support. We do care and send you our love and hugs......xoxoxo
      sigpic....

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      • #4
        You truly are a shinning star.You come across not as a complainer but a loving mother.Not to many would have that fantastic patience you have.But always remember a 5 minute break refreshes your body.Make sure you find a little space.take care xo.We love yah and prayers are with you.
        sigpic
        My Buddies -- Sue, Smiles, Jazzereal, Eng, Crops, Terry & Wolvsie35 , Onie, Marion, Jenna's Mommy, All My Memories, Winnie49, Tiffanys Scraps, Grannywin,emst



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        • #5
          You don't sound like you are complaining to me. It sound just like a Mother frustrated that she can't make her little chicks perfect. At least, the definition of perfect as the world sees it. As I am sure, even with their problems, they are perfect in your eyes. Don't ever apologize to anyone for putting your children first. They are the most precious things we have. Take care and prayers are with you.

          My Buddies - pkdoll, Marion and CraftyScraps

          &

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          • #6
            Awww sweetie, this is the place to let go anyways...It is nice to hear from you...and allways remember that we are here...Even if you are a fly...lol..I am sorry to hear what you have been going through...Doesn't sound easy at all...come to my house and I will let you sleep for days if need be...<wink> take care of yourself...and you will be in my prayers...((HUGS))
            I am a Designer 4 ScrapbookMax! Check out my STORE...Thanks!

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            • #7
              Wow.. We are raising our 17 yr. old with severe autism and it is about all I can do.. My prayers & praises are with you... Terry

              sigpic

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              • #8
                So nice to see you "talking" again, sweetheart! I'm sorry things have been so hectic. You're doing a marvelous job with those kids of yours. Hopefully the older son will be of some help to you, too.
                Melanie




                In case I go missing call Moonlightpearl, Granny, twpclerk or Smile! Then have them call Crops because we're probably together at the Yoville Races!

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                • #9
                  Life must be really hard and you have no time to reflect on any of it as you never get spare time.Being a mother is a full time job without any further challenges to face. No need for apologies, you deserve a medal and much support. Hope all works out at the hospital x
                  My BUDDIES Crops, Eye, Jazz, Smile, Sue, Rosana,twpclerk, Moonlightpearl and Vanessa

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                  • #10
                    Thank you all for your understanding, your support and your prayers, it was lovely to come home and open SBM to read what you have all written, it brought tears to my eyes

                    Emelio, his title is ***Food Refusal*** which I already know just never gave him that title. He was fully analyzed by all the professionals and so much came out of all this, he had an occupational therapist working with him daily, he had the psychologists and psychiatrist and nuro doc, he had a normal doc and nurses and the outcome heart breaking, more so for me and I'm still trying to come to terms with it.

                    He falls into the Autism spectrum, they got this diagnosis based on all the information supplied by myself, by the previous doctors and specialists and by other testings he has many strengths that go against this diagnosis and that was all explained to me.

                    Having the twin girls already on the spectrum and not fully understanding the full extent of Autism I didn't really realize the vast types of autism that there was. I mean I know that it came in many forms of variations but I didn't know it could be like it is for Emelio so that was really hard for me to swallow having now three kids on the spectrum was just a little too much for me to handle. Not sure why I struggle with that but sadly I do.

                    As for getting my little man the help he needs it will be a very long road and much patients needed as he basically tests new foods either by licking it or actually putting a fingernail size into his mouth and chewing it and actually swallowing it.

                    He needs an OT (Occupational therapist) as he has extensive motor skill delay that needs addressing, he needs to have corrective footwear because of how he has destroyed his feet from eating the flesh from both of his feet. He would benefit from having a trampoline to help with his balance, a computer to use in class instead of writing as we discovered he has over flexible fingers/hands that hinder his ability to do things like writing etc.

                    His oral sensation around his mouth and chin aren't receptive to food being on his face like for example an ice cream could be all over his face but he won't be aware of it even being there. There is a huge list which I won't bore you all with that needs to be done over time and this process/program for him to accepting every day food will take years and the road will be very long and rocky one.

                    We have to go into hospital twice a week for the rest of this year and no doubt the years to follow, extensive work and therapy etc

                    So there you have it that is a breakdown of what his diagnosis and what is install for him and me us as a family.

                    The girls did NOT cope well with the change and lack of sleeping and many violent tantrums were about.

                    It's been a harrowing week for me and I am glad to be home for some sense of normality though it hasn't happened yet lol

                    This week is filled with daily appointments so again I'm not sure when I'll be flying by again; until then thank you all for listening and your support, big hugs to you all
                    sigpicShould I vanish my buddies are: Moonlightpearl, Carena and scrappyaggie48

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                    • #11
                      I am so lost with what to say.God must have given you strength and he chosed you for these special children.You are such a good mother.If I lived closer I would help you out.You are so full of love.My prayers will always be with you.
                      sigpic
                      My Buddies -- Sue, Smiles, Jazzereal, Eng, Crops, Terry & Wolvsie35 , Onie, Marion, Jenna's Mommy, All My Memories, Winnie49, Tiffanys Scraps, Grannywin,emst



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                      • #12
                        Oh my you do have alot to deal with. Many prayers and love going your way.
                        I have a ten year old who was born with spina bifida nuero tube defect he eats the flesh of his feet and toenails too we have a very hard time keeping his feet from getting infection he also chews on his fingers. The school has gotten a computer for him to use there as he has very poor fine motor skills. He recieves some theropy thru school. His eating is good for what he eats he has reflux and if he doesn't like the texure of the food he won't eat it or make himself throw up.
                        he will not even touch hamberger! So I can relate to some of what you say. I don't know how you do it with three I feel like I'm going nuts just having to deal with one child with medical problems. If you need to find and thing out about autisim pm autisticwonder she has I think older twin boys who are autistic she has posted some info on one of her post awhile back I'm sure she would give you what ever info she has.
                        Rachell

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                        • #13
                          We are all here for you xxx
                          My BUDDIES Crops, Eye, Jazz, Smile, Sue, Rosana,twpclerk, Moonlightpearl and Vanessa

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