How many of us are Autism Moms?

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Hey everyone!

I was just wondering how many of us on this board were moms to a son or daughter with austim? I know that there were multiple things contributing to my weight but having an autistic child definitely added to my stress level. I've met a couple of fantastic moms on this site that are amazing advocates for their child while at the same time, finally taking time to loose weight and feel good for themselves!

I can start! I'm Tara and I have a 3 year old who is autistic, apraxic and non-verbal. He is just starting to attempt to say a few things but for the most part is still non-verbal. Everyday is different. It can be an amazing day where he is all for going to school, participating, coming home and playing! Other days, he is in his own little world, crying, non-responsive, hates school, does not want a routine. It is up and down! But I love him so desperately and while I would love for him to not have this disability, I wouldn't give up my Grady for anything in the world!
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Replies

  • jackswife1207
    jackswife1207 Posts: 59 Member
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    I'm one! My 10 year old son has Asperger Syndrome, so not as severe but still definitely very stressful (this school year has been especially stressful!) Takes up a lot of time and attention. He has anxiety and is very easily frustrated most of the time. Also by the time i've worked, dealt with him, and done all my errands, I'm exhausted. I have stuggled with depression and anxiety myself while dealing with the diagnosis.

    He is on medication that has caused a 30 pound weight gain this past year. He is really struggling with it. I also want to lose 30 pounds. I am partially doing this to be a better example for and to help him (and his sister). But I'm also doing it for myself. I know I'll feel better mentally as well as physically at a lower weight. I will then be better able to handle the stress.
  • cbreen90
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    I am not a mom but I have a 17-year-old sister who has autism and is mentally retarded. My whole family knows what you mean about good days and bad. Somedays are wonderful and some days are beyond exhausting. We also understand what you mean when you say you wouldn't change him...we wouldn't change Abbi for the world. Having a loved one with disabilities lets you see the world in a different light that you may not have otherwise. I think it is great you are taking initiative to take care of yourself! Take care and best wishes for you and your family! Good luck reaching your goal and never give up :)
  • WENDYRJ
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    My name is Wendy and I have an 18 year old daughter who has autism, mental retardation and cerebral gigantism. Abbi is my second daughter and, at birth, I knew something was different. Abbi never seemed to care about being held or rocked; about being close to me like her sister, Courtney, did. Abbi was happy to be fed, burped, changed and put down. She loved to be swaddled, wrapped up as tight as possible in a receiving blanket, but sometimes I wondered if she would have noticed if I fell off the planet. Every milestone was reached much later than Courtney had reached hers, speech,sitting up, crawling, walking........everything. It is difficult to raise a child who is challenged but I can't say that I would change a thing. Those of us lucky enough to have these children have the opportunity to grow and learn so much. Abbi has taught myself and her brother and sister patience, humor, maturity and given us the power to understand that we all are different and it's okay. I remember those toddler years, the frustration and tears over the realization that Abbi would never be like others her age. I still have those days. Abbi will never live on her own, hold a job, go to college or be a mother but she still has so much to give to anyone who knows her. I think the trick is to enjoy the ride with your child; ups and downs. Knowing that you use food when you are stressed or upset is half the battle.......I didn't realize it until recently (would have been a lot easier if I had figured it out earlier). Feel free; any parent of a special child, to add me as a friend.
  • dawnna76
    dawnna76 Posts: 987 Member
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    Hi I'm Dawn, My oldest son Eli (almost 4) is showing significant developmental delay in social/emotional development as well as expresive language. He goes to a developmetal preschool 4 days a week and sees a speech therapist once a week. We are set to have a sensory evaluation for possible OT and see childrens neurodevelopmental department as well but thats going to take some time. as of right now all testing and evaluations has been through our local school district and he recieves the therapy through them. So we technically dont have any diagnosis but we know something is different, and are working to help him out. So thats use in a nutshell, still hanging in limbo.

    I know his issues have stressed me alot and at times I tend to turn to comfort food like ice cream to just smother feelings. I am still on the emotional rollarcoster myself of wondering whats going on and mourning that he is different and that its so hard most days. He also just plain old tires me out, and I still have another one right behind him! He is a very busy boy and its hard to be a stay at home mom with him and never get the break.

    but them he does something so loving that it melts my heart and I am remined again why he was sent to me.
  • HidyleDidyle
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    Hi! I'm Heidi, and I have two little Autistic kids. My son is 5, and my daughter is 4. Both have language delays, sensory issues and behaviour challenges. But, both are sparkly and happy and full of enthusiasm for life as they run and jump and tear around our house. We've been involved with at home early intervention with Speech Pathology, OT, and Behaviour Psy. for 2 years, which leads to a busy life having people in the home 5 days a week. The kids also have attended a spectacular preschool which is amazingly inclusive regarding special needs kids. I'm currently homeschooling my son Kindergarten in the afternoons while my daughter attends preschool, and recently made the decision to homeschool both kids next year while still doing at home intervention, just to give them one more year of skill learning before possibly trying out "regular" school. All I can say is that we take things one day at a time, and rely on God for wisdom and strength to make the best decisions possible for our two little peanuts. Sometimes it feels like a challenge that I am not skilled to deal with...but then you take some deep breaths and shed some tears, and get on with things again. My guess is that my weight struggle has about 100% to do with some of the challenges we've faced...but I'm working on that too!
  • lavenderthistle
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    Hey, I'm Char (pronounced Shar) I have a 14 year old daugher with Aspergers and ADD. We moved a year and half ago from Scotland to the USA and she is having a horrid time of it. Other children are generally not kind to ours and she is very lonely and has started back on some behavoirs that we'd managed to change in Scotland. Her fixations are dolls, fairies, mermaids and Tim Burton films. She carries a doll with her everywhere she goes including to school. At 14 the other kids think this and she is very strange. Breaks my heart as she is a lovely, very artistic and brilliantly smart child. (as are most aspies) She had/has strong friendships in Scotland and those girls are still her friends and keep asking when she is moving back. Hate that my man's job is here. :o( Very frustrated with the system and the amount of time it took to get her into special education classes. She really needs social skills training but is too old to qualify and we can't afford the cost to pay for it privately. Been eating my anxiety away but realized this is just hurting me and my family as I am now desperately unhappy with the weight gain. I love weight training and have loads of muscle but it is now all hidden under a layer of fat. I also have type 1 diabetes and the weight gain has certainly not helped in controlling my blood glucose etc.. with that dx. I have gone back to my usual eating habits-no white potatoes, very little bread, low fat, try to eat according to the low glycemic index and very little processed foods. I've lost 3lbs this week but it will be a long, slow process.

    Wishing all well with their wee ones and weight loss!
  • TaraMaria
    TaraMaria Posts: 1,975
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    jackswife1207 - That is absolutely fantastic that you two are loosing weight together. It is so hard to balance doing what we need to do for our child and doing what we need to do for ourselves. Anxiety is one thing I try not to worry about with Grady but I do. I can see it already with his little perfectionist ways and he is only 3! :o( I can only pray for the future and hope that things get better. And if not, pray for the strength to carry me through!

    Wendy - How amazing that you have made it this far. 18 years old seems so far off to me. This past summer Grady's doctor told me that if he didn't start attempting to communicate in SOME form, that by age 5 we would be looking at a diagnosis of mental retardation. At this point, he has started using some signs and attempting to babble out a few words so I just pray that he doesn't slide back on any of his progress and keeps moving forward. The attitude you have about your situation is amazing. I do learn SO much from Grady...even from the bad moments. I blogged on here during a really bad moment and looking back, I figured out better how to handle that particular situation. It happened again this week and I went through a whole heck of a lot better then the first time! So good times, and bad times...we learn about ourselves and how precious our child is!

    dawnna76 - Oh my gosh tell me about it! This past Wednesday? Grady was a terror! He cried over everything, threw himself on the ground, wouldn't sign, wouldn't respond...I was at my wits end. Thursday he was a love. Got out of bed, hug! Got on the bus with no problems, colored for me, read books for an hour...SIGH! I wish I could bottle the good days! :o) When Grady was in the process of getting his therapy and getting diagnosed was the time frame that I was really on MFP. So I am grateful for that. But now I've lost the weight, and its hard to deny myself things sometimes. Especially after a day like Wednesday. :o)

    HidyleDidyle - That is fantastic that you are homeschooling! Right now I'm really in limbo about that. I would say 75% of the time Grady hates going to school. And I'm really torn on what to do. The child he is at home and the child he is at school? Night and day difference! He is withdrawn, secluded, quiet and stays to himself at school. He doesn't participate and actually likes to shove himself into the backpack cubbies and just sit. At home, he is bubbly and happy! I can get him to do things (when he isn't being stubborn! :o)) and he attempts to communicate. I remember going into the classroom for the last party and watching them give him a snack. I came up and said "He can sign please." I got in front of Grady and he was completely glazed over. He does not and will not sign in the classroom. He does not vocalize or say the words he says at home. It just makes me think he could do more at home if we homeschooled. I am not sure... :o)

    charsosweet - Oh hunny...my heart just breaks for you and your daughter. I hate how mean kids can be. I will start praying that a child reaches out to your daughter. What a difficult situation to be in! What area of the states have you moved to? I am so frustrated for you about her classes and her being too old. How were things set up in Scotland?
  • dawnna76
    dawnna76 Posts: 987 Member
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    we should make this a regular checkin with each other. As moms of special needs children our lifes can be so different from others that it would be nice to have a place to talk. about anything!

    I am a very outgoing person but I cant help but avoid playdates and public places becauseof Eli's behavior. because Eli looks just like every other little boy out there people give me dirty looks when he behaves the way he does cause they cant "see" that something is different and its hard to take the looks and judgements about my parenting. I am a great mom, they just dont know. Those stuations are the ones that usually have me running for the nearest fast food place and it hard. anyone else feel like they withdraw from public outings and playdates for fear of what might happen?
  • TaraMaria
    TaraMaria Posts: 1,975
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    I would love that Dawna!

    That is one thing I say about autism all the time. It doesn't have a face. My child looks absolutely normal until he explodes into a temper tantrum for some unknown reason. Its incredible frustrating and my heart breaks for him. I don't care about other people half the time, but I get exhausted dealing with him in a public situation. Its more comfortable at home, more control.

    How old is Eli?
  • HidyleDidyle
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    Yes, I understand about one's circle of activity shrinking because of how our children react. That being said, I do keep on trying. When we go to the park, I chose parks that are more enclosed versus wide open spaces. I also choose parks that may have fewer people as opposed to more. My children play very nicely at parks, but when there is the added stimulation of lots of other kids, things can escalate and fall apart quickly and my children forget all about safety and my son especially loses his filter as to what is appropriate social/physical contact, running too fast, not watching where he is going, banging into kids (not with the intent to hurt, but just to get that physical feedback that his body craves).

    As they have been getting older, I've been more brave, trying out the "popular parks" more, but I always watch my kids' bodies and the "signs" that they start emitting, indicating that some wild and crazy behaviour is just around the corner and then we leave (and because I'm constantly evaluating situations and expecting certain behaviour, I always try to have something up my sleeve to help with the transition...which sometimes works, and sometimes does nothing to prevent the meltdown). We use a lot of "FIRST...THEN" language, and have for a few years, and it had helped a great deal with getting my expectations across, and them understanding what is required.

    Hang in there. I totally understand the difficulty, and the mental preparation it takes as a Mom to take your kids out, and be able to first of all handle your child's struggles (public or not) and then to not allow the "looks" and sometimes comments that people observing can dish out. I also understand the toll that an outburst takes, and how a person has to shake it off and keep on going, knowing that it is just a part of life.

    One day at a time ladies, one day at a time. God made our little ones with His Wisdom and Sovereignty. It is impossible to understand the why's.

    Just take things sometimes even one moment at a time, if that is what it takes! And don't forget to enjoy the good, when a word or gesture is used instead of a yell or hit, or the first time they say Mommy after years of waiting, or when you tell them they have to wait until you count to 5 (baby steps all the way) and they sit and wait without getting angry.

    You can do this.
  • audiemarie
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    Me!!! My son is Christopher he is 7 will be 8 in March. He has Aspergers. I am finally realizing I need to take of me to take care of him. It has taken me a long time to figure that out. He is on medication that has made him gain a great deal of weight. The great thing about him is he does love healthy food...of course he loves unhealthy food too ;) I am trying to teach him the right way to eat without trying to make a huge issue out of it so it might become second nature to him. I am so glad you asked this question.
  • lavenderthistle
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    charsosweet - Oh hunny...my heart just breaks for you and your daughter. I hate how mean kids can be. I will start praying that a child reaches out to your daughter. What a difficult situation to be in! What area of the states have you moved to? I am so frustrated for you about her classes and her being too old. How were things set up in Scotland?

    Ah, thanks for the post. We've moved to Texas and with the law here medical insurance only has to cover/offer children social skills or other therapy up to age 10. If she has also received a dianosis of encephalopathy then the insurace will cover part of the cost of the social skills classes. We are in the process of contacting all her doctos to see if this has been given or can be given. I understand that it is a common diagnosis for children w/ Aspergers/Autism as it refers to the way the brain functions.

    The one good thing about moving to here is my girl did get a diagnosis of Aspergers. Before she had ADD/ADHD and Sensory Integration Disorder. However, in Scotland, she had assistant/helpers that met her and carried her bookbag, walked her to her classes, made sure all her additional support needs were in the classrooms, helped with her organizational skills (of which she has none!) She also got out of her classes 5 mins before the bell and also out of school the same. She received loads of help.

    She is finally getting the help she needs here but still not as much as she received in Scotland even w/o the diagnosis. :o( But I will continue to 'fight' for her. lol

    Hope all is well with you and your wee one.

    Smiles, Charsosweet
  • TaraMaria
    TaraMaria Posts: 1,975
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    Hey everyone!

    Last week was a really rough week for us here. Grady seems to either be developing some anxieties or just really settling in to the fact that he is three and can throw temper tantrums. Ha ha! Its hard trying to figure out how much of the bad times is Grady trying to figure out how to express himself or a truly autistic issue. Its so hard.

    One issue that has really been on my heart lately has been the thought process if Grady were to ever slip away from me. He LOVES going outside and doesn't understand the concept of staying by me when were are in public. He is the completely opposite of other autistic kids and truly does NOT know a stranger. It terrifies me! Its the last thing I really want or need to think about but with spring coming I know we will start spending more time outdoors. Sigh.

    Anyhow I ordered a medical alert bracelet for him. If he ever slips away from me it has "Nonverbal Autistic" on it with his name and my phone number. Just seemed like a good idea in case something were to ever happen. Just a little comfort factor on my end. :o)

    How is your week going? :o)
  • jae6704
    jae6704 Posts: 458 Member
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    I am the mom.of a 6year old boy who has aspergers. I am so happy to see an area here on this . Most of my time goes to him
  • HidyleDidyle
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    I understand that fear completely, and was one of those mothers who had their children in little backpack "leashes" when we'd go to places like the zoo, so that I always knew where they were (even if my son was throwing a tantrum on the ground because he didn't like being attached to me).

    My children are only now beginning to understand the dangers of running off. Actually....I don't think they get it yet either. But they don't resist my attempts at keeping them close, and don't always run off.

    My son has no concept of strangers either and happily approaches or says hello to anyone. My daughter is more "typical" autistic in that she doesn't acknowledge strangers at all, however has no fear about bolting away from me across a street or in a parking lot.

    Hang in there. It does, slowly get better. I can now take my children to a store without having to squish both of them into a cart, and they won't run away. We make really quick trips, and I give them jobs to do (like holding a loaf of bread or something). The scary part is always associated with waiting...waiting for our turn in line at the check-out...but that is getting better too. I'm still not comfortable taking them to really crowded places like a busy park or a mall, because they both forget about any kind of safety awareness and staying close by. But baby steps.

    Hang in there. Hang in there. Hang in there. And don't be afraid to use a harness. It gives an amazing piece of mind. Just prepare yourself for those "looks" that people give when they are making a judgment call without having all the details. Grady is your baby. He IS going to learn about safety and strangers....it is just going to take a lot longer than typical kids. And you do what you need to do to keep him safe.
  • TaraMaria
    TaraMaria Posts: 1,975
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    Are any of us doing anything for World Autism Awareness Day? I heard about the light your house blue for autism and I'm going to home depot to see what they have in the department of blue house lights today! :o)
  • rjnandjosh
    rjnandjosh Posts: 168
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    I have two autistic children. One 12 with PDDNOS the other nine with aspergers. Sometimes are difficult but I am always going to fight to take care of my kids and help them be the best they can My 12 year old is also medically fragile.
  • rjnandjosh
    rjnandjosh Posts: 168
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    We are all going to wear blue and light up our home and yard
  • rjnandjosh
    rjnandjosh Posts: 168
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    Hey did you ever get a talking board for your precious baby? it helps a lot with their frustration because they can verbalize their wants or needs.
  • Itsmetimi
    Itsmetimi Posts: 8 Member
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    I have a 15 yr old son with Asoerger's. He is doing wonderfully and is a freshman in high school.