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A Gift Of A Special Child
Великобритания
Добавлен 17 май 2021
Hi and thank you for stopping by. My name is Julia and this is my daughter Olivia. When Olivia was diagnosed with a rare genetic condition called Rett syndrome I thought that my life was over right that moment. My only question at that time was “Why is it happening to me?” Every day Olivia proves that it happened not To me but FOR me.
My humble intention is to show through my own journey that a disabled child is a pure gift to a family. Caring for a special needs child is often a challenging, overwhelming and unrecognised job, but when I look into my daughter’s eyes I understand that it is all worth it. She chose us to be her parents because she trusted we can handle it. In return, she teaches us so many valuable life lessons that we would never learn otherwise.
If my content helps a parent to see a true blessing in a disabled child and realise that life can still be wonderful and full of joy I will fulfil the purpose of this channel.
My humble intention is to show through my own journey that a disabled child is a pure gift to a family. Caring for a special needs child is often a challenging, overwhelming and unrecognised job, but when I look into my daughter’s eyes I understand that it is all worth it. She chose us to be her parents because she trusted we can handle it. In return, she teaches us so many valuable life lessons that we would never learn otherwise.
If my content helps a parent to see a true blessing in a disabled child and realise that life can still be wonderful and full of joy I will fulfil the purpose of this channel.
Special Tomato Jogger Overview
Special Tomato Jogger Overview
Recently we've got our new Special Tomato stroller and we can't be happier to use it in our daily life.
From Rett Syndrom Research Trust
Rett Syndrome is a genetic neurodevelopmental disorder that predominately affects girls. Its symptoms strike typically between 12 to 18 months of age. The disorder is caused by random mutations in the MECP2 gene on the X chromosome. Rett Syndrome is devastating, as it deprives young children of speech, hand use, and normal movement, leaving many individuals without the ability to walk or communicate.
Rett syndrome was first identified by Andreas Rett who stated that:
“They feel all the love given to them. They have a great s...
Recently we've got our new Special Tomato stroller and we can't be happier to use it in our daily life.
From Rett Syndrom Research Trust
Rett Syndrome is a genetic neurodevelopmental disorder that predominately affects girls. Its symptoms strike typically between 12 to 18 months of age. The disorder is caused by random mutations in the MECP2 gene on the X chromosome. Rett Syndrome is devastating, as it deprives young children of speech, hand use, and normal movement, leaving many individuals without the ability to walk or communicate.
Rett syndrome was first identified by Andreas Rett who stated that:
“They feel all the love given to them. They have a great s...
Просмотров: 4 513
Видео
Coping Mechanism For Parents With Special Kids (part 1)
Просмотров 1432 года назад
Coping Mechanism For Parents With Special Kids (part 1) When I talk to other parents of special kids several topics are the most common in our conversations. We laugh and cry but most importantly we share a valuable experience that could be helpful for other parents coping in similar situations. Topics for a good chat could be different from daily struggles to solutions and wins. Today I'd like...
The Perception of Your Disabled Child
Просмотров 782 года назад
The Perception of Your Disabled Child For people who are close to a special child, this child is so much more than his physical or mental abilities. It is very hard to explain to other people. Being around my daughter I feel like I would interact with another planet or even universe, very complex, mystical and very unique. Looking into Olivia’s eyes I see a soul that is trapped in the body that...
Hippotherapy in action
Просмотров 4812 года назад
Olivia's first horse riding experience. Hippotherapy is a form of physical therapy for children and adults that uses the motion of a walking horse to provide therapeutic movement to the rider. Horse-assisted therapy is very beneficial for children with neurological impairments and gross motor issues. It not only can help with strengthening and stretching muscles and with balance, but hippothera...
Chronic sorrow in parenting a child with a disability
Просмотров 5592 года назад
Chronic sorrow is a state of being which is underlined, not always on the surface but can be triggered by some events or circumstances. It has a reoccurring nature. It changes over time but does not end. Chronic sorrow for special needs parents comes and goes - often with high peaks when a child enters new life stages. Grief associated with a child’s disability is both pain and sadness about wh...
“The best gift we could give to our disabled daughter is a sibling”. Interview with Yelda
Просмотров 872 года назад
“The best gift we could give to our disabled daughter is a sibling”. Interview with Yelda Almost 4 years ago my daughter was diagnosed with a complex genetic condition called Rett syndrome. I’ve been going through all stages of grieving until I got my feet on the ground and realise that my child’s diagnosis is not the end of the world. This is when the process of healing started and a bit later...
Pet Therapy for children with special needs
Просмотров 972 года назад
Pet Therapy for children with special needs I read about animal-assisted therapy and generally about pets’ therapeutic abilities. Indeed, cats, dogs and other pets can provide a sense of calm, comfort, or safety. Advocates of animal-assisted therapy say that creating a bond with an animal can help people develop a better sense of trust and self-worth, balance their emotions, and improve their c...
How to support parents of a newly diagnosed
Просмотров 662 года назад
How to support parents of a newly diagnosed Could it be that someone from your family has just received the devastating news about their child’s health condition? You want to help, ease their pain, support, but you just don’t know how. There are lots of things you can do that could be really helpful, starting from help around the house, while parents of a newly-diagnosed child take their time p...
How to talk to a child about his sibling’s disability
Просмотров 912 года назад
How to talk to a child about his sibling’s disability How to talk to a child about his sibling’s special needs? When is the right time? It was even more important for me to figure out how to behave with my older son so he wouldn’t feel that he is less loved because he doesn’t have as much physical attention as his special-needs sister. There is no right or wrong time to speak openly with your k...
The importance of social interaction for special needs parents
Просмотров 712 года назад
The importance of social interaction for special needs parents What I hear a lot from parents of special needs children is how isolated they feel while caring for their loved ones. Often parents choose to isolate themselves from society, their family and friends because they think that no one could understand what they were going through. In other cases, families with disabled kids are kind of ...
Are you ready for the next step? A wheelchair for your special child
Просмотров 1012 года назад
Are you ready for the next step? A wheelchair for your special child If someone told you that your 18 months old baby would have to use a wheelchair by the age of 5 or 6 how would you react? Probably you would be mad and never speak to that person again. If someone offered you to consider a special buggy for your 3 years old child when despite all your efforts to help your baby to learn walking...
Fear of the future when raising a disabled child
Просмотров 3372 года назад
Fear of the future when raising a disabled child When I just found out about my daughter's diagnosis I started to google this condition. The “knowing what to expect” was a massive trap for me. My thinking was that I needed to prepare myself for the future with Olivia. What could happen? What other symptoms she might develop? All those questions were unbearably heavy for me but I thought I had t...
Merry Christmas 2021
Просмотров 882 года назад
🌟 Merry Christmas 2021 🌟 Seasonal Greetings!!! 💜💜💜 From Rett Syndrom Research Trust Rett Syndrome is a genetic neurodevelopmental disorder that predominately affects girls. Its symptoms strike typically between 12 to 18 months of age. The disorder is caused by random mutations in the MECP2 gene on the X chromosome. Rett Syndrome is devastating, as it deprives young children of speech, hand use,...
My disabled child teaches me unconditional parenting
Просмотров 1542 года назад
My disabled child teaches me unconditional parenting Praising your kid for achievements and punishing for bad behaviour, setting some kind of expectations that he/she needs to meet, or putting some projections on your child’s life, your unfulfilled dreams that your child has to fulfil. All those things are conditions that parents set out for their kids. So what does unconditional parenting mean...
Celebrate every little win with your disabled child
Просмотров 1062 года назад
Celebrate every little win with your disabled child A new mother is trying to educate herself on how to deal with a newborn, what milestones he has to hit. Parents celebrate every new thing that their baby is doing. It seems natural but still feels like a little miracle: that first smile or the first step. It’s a different story when a child has some health issues and doesn’t hit those mileston...
Are you constantly worried about your disabled child?
Просмотров 1662 года назад
Are you constantly worried about your disabled child?
The importance of self-care for special needs parents
Просмотров 5323 года назад
The importance of self-care for special needs parents
Are you a good enough mom for your disabled child?
Просмотров 1223 года назад
Are you a good enough mom for your disabled child?
Why is it hard to ask and accept help?
Просмотров 1,1 тыс.3 года назад
Why is it hard to ask and accept help?
A lesson of compassion from a special child
Просмотров 1063 года назад
A lesson of compassion from a special child
A Lesson of communication from a special child
Просмотров 1303 года назад
A Lesson of communication from a special child
A Lesson of patience from a special child
Просмотров 2263 года назад
A Lesson of patience from a special child
A lesson of gratitude from a special child
Просмотров 1223 года назад
A lesson of gratitude from a special child
A difference between self-pity and self-kindness
Просмотров 1053 года назад
A difference between self-pity and self-kindness
A wake-up call for special needs parents
Просмотров 1453 года назад
A wake-up call for special needs parents
What is Rett syndrome? Is there hope?
Просмотров 3603 года назад
What is Rett syndrome? Is there hope?
Acceptance - stages of grieving for child’s disability
Просмотров 2453 года назад
Acceptance - stages of grieving for child’s disability
Bargaining & depression - stages of grieving for child’s disability
Просмотров 1893 года назад
Bargaining & depression - stages of grieving for child’s disability
Words of wisdom
I'm thankful for your story, thank you very much!
How do you put the front wheel on?
You may want to reach out to Joni and Friends.
Peace and blessings to you. Ask Jesus for help. I pray you get in touch with a church community of helpers. Philippians 4:4-8, Proverbs 3:5-7, I Peter 5:7
Please don't call us "Special Needs". People who use euphemisms are still in denial; and denial will not help your child. Actual disabled people (like me) call themselves "disabled" and are not ashamed of their disabilities. By using euphemisms, you communicate that you are ashamed of, and can't accept, your child's condition.
Some parents never get past their anger at being denied the child they wanted. Mine never did. Even 23 years after my diagnosis, when she had terminal cancer, my mother was still angry and looking for someone to blame that she didn't get the daughter she had wanted, and thought she deserved. Like you, my mother saw my disability as something terrible that had happened to HER, not me. We literally had no relationship because all she felt when she looked at me was disgust and rage. My father never got past denial. So, all I could do to cope was to stay out of their way and disappear. Recovering from my coping mechanisms has been far harder than the hardships my disability caused. I am 54 now and they are both gone but, I am still dealing with the hurt of being raised by two people who should have given me up for adoption.
I just bought this stroller as my photography cart stroller to hold all of my equipment. It is supposed to arrive July 11th.
Everyone planning to have kids needs to hear this message. If you're not prepared for the worst, you might want to reconsider. If you're ready for a lifetime of caring for a disabled child, then you ARE ready.
I needed this today. Thank you. Special needs mom to 11 years old and 13 years old boys. Both have different disabilities. It's been over a decade and I still don't know how to respond when people compliment me on my handling of my situation, but that's just it.... it's MY situation. Like you said, we don't have any other choices. Just because we are good at it doesn't mean it's easy or not heavy on us. It weighs us down completely some days. Reminders like the messages in this video are very important to parents like you and me. Thank you, again. I hope you keep making more videos 💕
👍🏼i can comfirm that
Hi there I am a special mom too and I been searching for a stroller for my 8 years old son with epilepsy and hypotonic he is almos 4 feet long and 60 pounds
Hey, Marisel. in terms of weight it should be fine. In the description it says it can hold up to 50kg (110 pounds), but height-wise might be tricky. My daughter is (1m) 3.3 feet and still has some space to grow, but not too much, maybe another 10cm. Good luck with the search. I know it is tricky!
I just discovered you today . I absolutely loved hearing you speak on this. Mom of a16 yr old with severe autism
thank you for your comment. sending you my good vibes. Take care of yourself, sister.
Thanks for sharing your experience and reflections. Very insightful.
i'm glad that you found my video helpful. thank you for watching.
Thank you for making these videos, they are helpful in thinking about the future.
Thank you for your support, Ben. That is my own therapy to help other special parents to look at the situation from another angle, accept what we can't control and just live our life to the fullest.
p♥r♥o♥m♥o♥s♥m 😠
thank you so much for this video <3
i'm so happy it was helpful for you to hear this
You are doing such an amazing work J 👏 sending you love & light 💜
Ania, thank you so much for your kind words. That is my way to the healing.
Have a 30 years old former learn Unfortunatelly i have too far
I love this video .. the dedication of the people making Olivia feel great is amazing and Olivia is a real cutie!! 😍
? ｐｒｏｍｏｓｍ
What wonderful mothers you are ladies.
Anya, thank you, my dear friend
Thank you for sharing this. It really helps to understand the nature of children and how they feel everything even if they don't show it.
♥️
I needed to hear this today 😢
I feel you, Sbfairy! Im humbled to know that my video helped you today, We are stronger than we know. 🙏 Sending my blessings to you!
Yes, children come to this world to teach us lessons and show us what's most important. You're a great Mom!
thank you, Mel. 100% agree with you. Sometimes i feel they teach me more than i could ever teach them. 💜
❤️🧡❤️
I have a dougther she a kidney transplant and I spend the my self to take care her
what a strong saying "spend myself"! I also feel this way from time to time. 10-15 min self-care a day reminds me that I am an endless source of inner power that can never run dry. we just need time to recharge! 💫
A good sleep, a long shower, breath work, a walk, a pause and being in the now for a few seconds. Thank you!
often i have to remind myself of actually practicing all these things 😊
Beautiful explanation!
thanks, Susan 😊
Julia very beautiful verse, video footage .
Hi how are you?
Hi, I am good. I hope you too 😉
Thank you! I really relate to being unable to ask for help. It feels humiliating... but I know once I switch from pride to humility I get flooded with gratitude for all the support and help I constantly receive x
Absolutely agree. Our ego is always on the way, but once we shift the perception of asking for help that's a completely different story.
God bless your daughter. You are doing great job keep it up
Thank you so much for your encouraging words!
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thanks, Anya, for watching!
Thank you for sharing this xx
I agree, I see the world very differently now with gratitude for the simplest of things and have no time or space for anything I choose not to
yes, for me it was a total shift of perception
Beautiful x thank you!
Thank you
Thank you for such a beautiful message xx
thank you for your time xxx
Your message is unbelievably inspirational Julia. To respond in a way that you have, to be so certain that Olivia's condition happened not to you but FOR you, is, well special. Anybody in a similar situation (for that matter anybody who has experienced struggle in their life) needs to connect with you. I believe you will go on to affect and help people in the most positive and beneficial way. Olivia is for sure the most beautiful of little girls :)
Ben, thank you so much for your kind words. It is my true passion to help parents to see their special kids as their blessing. It is very hard in the beginning when you find out about the health problems, but with time your perception shifts and you look at your child and see a miracle, an endless source of unconditional love and wisdom.
and you are my first subscriber YAY... 😊