Mom and Caregiver... Children w/ Down Syndrome or other (Specifically if your child has regression)

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Lula1068
Lula1068 Posts: 38 Member
in Motivation and Support

Hello 😊
I'm a mom and full time caregiver to my 21 year old beautiful daughter who has Down Syndrome. She has had some severe regression over the past 10 years and we are learning more everyday about her needs and ways to support her.
I wonder if there are other Mom's out there working hard to stay healthy in order to give their child the best part of them and to remain a strong caregiver for as long as possible? I am sure there are lots of us!!
It's a difficult (to say the very least) battle to stay healthy and be a caregiver/mom especially when your child is frequently ill combined with special needs.
I would love to hear from you and be a part of your health journey support team!!
Please add me if you feel like you could use the extra support 💪🏋️👍😊

Replies

  • dejavuohlala
    dejavuohlala Posts: 1,821 Member
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    Hello lulu.

    This maybe useful. Put it into the search

    'Any parents or family of amazing special needs children of any age and any ability?'
  • dejavuohlala
    dejavuohlala Posts: 1,821 Member
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    Yes there are lots of us, I lost my daughter but cared for her 24 /7 until she was 28. Bless you.
    My other daughter is a specialist nurse for adults with learning disability we understand your life.

    Good luck. Carol
  • Lula1068
    Lula1068 Posts: 38 Member
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    dejavuohlala wrote: »
    Yes there are lots of us, I lost my daughter but cared for her 24 /7 until she was 28. Bless you.
    My other daughter is a specialist nurse for adults with learning disability we understand your life.

    Good luck. Carol

    Blessings to you and your family as well! Thank you for sharing this with me and I'm incredibly sorry for your lost.
    It's very important to know we aren't alone. I appreciate that you took time to respond.
  • dejavuohlala
    dejavuohlala Posts: 1,821 Member
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    Thank you Lulu

    Do feel free to add me or message anytime. Take care and love to your dear daughter.
  • autismmomma9
    autismmomma9 Posts: 1 Member
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    I am a single mom to two severly autistic boys. Eating and smoking cigs are my coping mechanisms. Which both are unhealthy and I am tired of how I feel as well as look. And it is time for a change. So I am starting today and which of course I may not be able to do both at the same time (quit junk food and smoking). But I want to look good,feel good,and best best shape for myself and kids.
  • dejavuohlala
    dejavuohlala Posts: 1,821 Member
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    Autismomma

    It's best to change things gradually, don't try to quit smoking and eating, why not try cutting down cigs first that's propbably worse of the two evils. I wish you luck you sure have your hands full with you two special boys, I wish you all the best.
  • Lula1068
    Lula1068 Posts: 38 Member
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    autismmomma9 wrote: »
    I am a single mom to two severly autistic boys. Eating and smoking cigs are my coping mechanisms. Which both are unhealthy and I am tired of how I feel as well as look. And it is time for a change. So I am starting today and which of course I may not be able to do both at the same time (quit junk food and smoking). But I want to look good,feel good,and best best shape for myself and kids.

    Feel free to add me!!
    Lots of hugs and encouragement today to you.
    It's not easy to do all things we must do but one thing is for sure...you are my hero!! You and and all the families who work so very hard to care for your children and yourself.
    I agree...one habit at a time! 21 days is all anyone needs either to gain or lose most habits. You can do it!! Look at the strength and endurance you already have. Working out and eating well doesn't make withdraws on our emotional strength and endurance bank it makes deposits for when we feel drained from a meltdown, ANOTHER doctor appointment, a phone call from school, a nasty stare at a restaurant, or the endless isolation from family and friends.
    You got this!
  • Lula1068
    Lula1068 Posts: 38 Member
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    Good morning Moms!
    This past week and weekend were incredibly difficult for our daughter. She's been diagnosed with with Catatonia regression disorder and we thought we had been in the right treatments...they were working very well. Over this week we've learned they are not working and we're back to square one. She's lost all the gains and we're heartbroken.
    I know I am emotional eater and ketoish - Paleo diet helps with that but yesterday I ate 4 Oreo cookies and a donut 😒 and did a lot of crying...not over the cookies or donut just the situation.

    I'm thinking of those of you today who might have had a heartbreaking situation over the weekend but yet continue to fight to stay strong... praying for you and know you're not alone.

    I am headed to the gym to work it out...
    What do you do to work it out? How do you process and put your emotional feet back on the ground?
  • dejavuohlala
    dejavuohlala Posts: 1,821 Member
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    Hi Lulu

    I have never heard of that disorder, I'm sorry you are having such a rough time and hope the treatment can be improved. Take care Carol
  • Lula1068
    Lula1068 Posts: 38 Member
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    dejavuohlala wrote: »
    Hi Lulu

    I have never heard of that disorder, I'm sorry you are having such a rough time and hope the treatment can be improved. Take care Carol

    Thank you for the encouragement!
    Catatonia regression is a disorder that is rare but found in a subgroup of young adults with DS. It's incredibly frustrating and heartbreaking to witness and even worse to get battle thru to the best treatments.
  • Lula1068
    Lula1068 Posts: 38 Member
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    Good morning Moms!
    I hope your day is peaceful and filled with those moments that makes your heart remember the love you have for those who need you.

    Stay healthy today. Make choices that keep you strong and determined to get through what today will bring 💪

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