I Resent “Normal” Families as a Special Needs Parent
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- Опубліковано 15 жов 2021
- I Resent “Normal” Families as a Special Needs Parent
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As the parent of a 20 year old blind/deaf son with epilepsy and prior brain surgeries, you all did very well with this call. It's VERY important to take time out for YOURSELF, your kids, and your husband! We have a husband/wife 2 hour date night one time a week. We also made sure we had "special" one on one time with each of our other boys. This is your "recharge" time. Even when my husband got home from work, if I could go to the grocery store for 30 minutes by myself, it was a "recharge" time for me! The other thing I want to mention is try to join a special needs parents group in your area. Just being to sit with other moms or facetime, it offers a LOT of support. You don't even need to find one that exactly matches your daughters diagnosis, just find a special needs group for mom's. And finally, it's ok to cry your brains out! You get to a point that your gas tank is full and some tears must spill out! This means you're human and it's ok. I understand you you feel. God Bless!
🙏🙏🙏💙💙💜 bless you and your family
Brother, quit saying your show is bad. I know you're being sarcastic but y'all don't need that energy. Literally one of the best shows in America ❤️
He will gain confidence with time 🙌🏼🙌🏼
This is something no one talks about. No one thinks about what happens when their kid is abnormal. The burden it becomes. The constant dependency. It is really hard and people just gaslight you into pretending nothing is wrong.
It’s also incredibly expensive. Nobody ever discusses that either. I envy parents who complain about sports & the cost. Like girl…look at our speech therapy & tutoring bill
My son is now 36, he’s had many disabilities & my daughter was gifted and talented. Every year he had an IED, hard to listen to professionals tell me everything “wrong “ with him. I had to go thru the stages of grief & be mindful of all the things he can do. Plus grateful for all the teachers & doctors who helped him. Today he is happy, loving& working!
And how is your daughter doing?
She is very close with her brother & understands him. She is happily married & working, plus her husband likes him. They bond over video games.
I can relate. I get tired of seeing peoples “All Star” kids on Facebook. I get resentful sometimes but at the same time I wouldn’t trade my special needs amazing kid for no one. It’s okay to feel that way.
Get rid of Fakebook I did it and I feel so much better!!
You are just lying to yourself because your brain can't handle it. You know good and damn well that you would remove your kid's disability in a heart beat if you could.
My daughter didnt walk til almost 2, she didnt talk til 3.5 and shes only just over 4 now. It is indescribable to not know what the future holds in this way but for us we are seeing more good days than bad now, there are still moments of sadness and panic but we are hopeful for her future.
I hope this little girl turns that corner soon, however that looks for her and her family, there are going to be so many brighter days to come. Every word she speaks will fill that family with such overwhelming pride they will cry. And those are the best moments.
My friend with a special needs son was able to get 20 hours a week of respite care through a state program, so look in to that in your state. It really helped her cope and retrain to be a nurse so she could better support her family.
Kelly!! Thanks for bringing her in, clearly she is a powerhouse of a woman
Our son has Cerebral Palsy and Epilepsy he’s 3, non verbal. He is amazing, cute, funny, he tries so hard and has a ton of people who love him and support him. I think as a parent the frustration is you can’t solve these problems and all you want is them to have an easy and happy life, make friends, play and experience the world. They have limitations that are imposed on them that they don’t deserve. It’s hard to be around parents of ‘normal’ kids sometimes, the things they complain about can feel so insignificant and the constant feed of what other kids are doing is conflicting because you are so happy and proud of what your friends kids are achieving yet you always feel the pang of that’s probably never going to be the reality of what my kid is going to do. People don’t understand the constant worry, the endless not knowing what is next, the challenges they will have to overcome. Most parents thankfully haven’t had the hours by a hospital bed, the endless appointments and the meetings in that room every hospital has where they prepare you for the worst possible outcomes, the battles you have when you know what’s going on with your child and specialists are trying to convince you otherwise even after your hours of research and watching every move they make 24/7. Everything takes planning and you second guess everything. We were told 3 times our son probably wouldn’t make it in his first six weeks, would I trade any of this for the alternative, absolutely not he is the light of our life, he is pure joy and we are so proud of every little achievement he makes. People don’t truly understand how hard it is but I wouldn’t wish the hard parts on anyone. Life is different for our family but there aren’t words for the love we have for our son, he is the easy part, it’s everything around him that’s hard.
I have a disabled sister. John you do great work. Very emotional work that you do.
I have only just seen the title thus far but as the sister of a very low functioning special needs brother who I will eventually be adopting after my parents pass, I get it….. it’s not that we mean to resent the people around us. It’s just we feel…. Forgotten and different. Everyone has freedom of their vacations and their home life consists of “normal” activities. And their futures are just different. We love the special needs people in our lives more than our own lives. But that doesn’t mean it’s not a difficult life….
How do you accept this? Have you ever considered nursing home care? I have a sister with special needs and this sometimes weighs on me...
@@andrea9797mdd Aw yes it’s such a hard decision! I don’t think anyone should ever feel guilty if they feel a nursing home type facility would be best for their loved one!! For me, it’s just not really an option in my mind because of the way my brother is. He has to sleep very close to one of my parents and eventually me. For me, it’s been years of giving it to Jesus, and knowing that He will give me the Grace to take care of him when it is time is a reassurance. I do not have the grace for it now cuz we arent there yet. (Getting closer as my parents are in their 70s now) but I will have the grace for it when it is time. I also knew I couldn’t marry a man who wasn’t ok with that in his future and God gave me a man who is ready for it. So whatever it is that you need in your situation I pray God gives to you. Definitely don’t be afraid to talk about it with someone (I still think I may seek out a therapist just to chat about it) and always look up whatever resources u have in your state!!! This is by far one of the must vulnerable of things in my life and so my heart goes out to u! Whatever u decide for your sister remind yourself that YOU are a great sister to her!
@@LilEagle2015 Thank you! You are a dear!
My goodness great input from Kelly! I don't even have children but I felt the value from her advice
Natural feelings. Sometimes I get annoyed with the things typcial families complain about as they seem so trivial in comparison but I just hold my tongue as that is their experience. I prefer other special needs families as friends tbh.
Ooooh I’m going to feel this one. I have a special needs son.
My husband and I would get resentful about so many people that got financial support from government and we were barely keeping up we are still live our starter home 22 years later. We are now doing very well financially and I learned to be honest with myself and I have been happy.
Mom guilt is a thing even without the extra weight of a special needs little one. I can't imagine how those difficulties would complicate it. Plus, I've had the experience of planning a great outing and having it fall apart. Just so moms in this situation know some of these emotions are similar even under "normal" circumstances and I'm sure magnified with the grief added in.
Absolutely. There is also a lot of pressure put out on special needs parents that they should embrace their circumstances and they should never “wish” that their child was different. It’s totally normal and ok to dislike your child’s disability and wish they didn’t have it. At the end of the day if you love your child and do everything in your power to make sure they receive the best resources possible you are doing a great job.
Christ I felt this. My son has a range of physical disabilities plus intellectual disability. It’s so depressing. My wife left me with the pressure of it all.
Shout-out to Kelly! Awesome input 🙂
Many years later I still feel that way I missed out on I feel a lot of situational friendships and bonding with other parents and other peers my age that went through parenthood a lot differently than I did so it’s somewhat of a isolation if people say it’s not it really is
Just because your spouse is in the military doesn't mean you have to move. My mom told my dad when they were dating she was never going to move around so we stayed in one place while my dad was in the Coast Guard. Went to school with a kid whose dad was in the Navy and his mom did the same thing. My father in law was also in the Navy and my mother in law didn't move around with him. All of those marriages lasted. With a special needs child and state support having a long wait list, consider if moving around is right for your family. You lose out on the subsidized housing but gain consistency and a support system. Plus you can also focus on a possible career outside of the home that even if part time helps mentally. I have known many special needs moms where they can't work full time but part time work allows them something to focus on that's different and enables them to be a healthier parent and provide more support.
I was relieved when I put my 17 yr old sick cat to sleep. It broke my heart to see him struggle with his immune disorder and I was exhausted from the constant care I had to provide. I'm glad I don't have kids.
Me too! From this video, it proves to me that I made the wise decision and collecting my dividends❣️
Kelly needs her own show!
As the mom of non-special-needs children and a special needs daughter who has a rare genetic disease, it is very hard and I constantly "mourn" the life I thought my daughter would have and also the life I thought I would have with my daughter. I am now a stay at home mom to care for my daughter by attending therapies all throughout the week and I never imagined life as a stay at home mom looking like this either. There can be a lot or anger that can build it and it's not something I verbalize often but it definitely does help to talk about it and my frustrations because they are valid. Also there could be someone else dealing with similar things who could help us through it but also who we could help as well, but if we internalize everything then we would never have those opportunities.
Dear Michelle, I feel for you. My son started to have seizures and I didn't know how to handle this. The thing is... in my case the General Practitioner never explained what is it that gives my child the seizures. I had to find out on my own that this maybe is because I had consumed "artificial Sweetener" during pregnancy, because with my first child I had been diagnosed with Diabetes. Its much easier now that I know it is that sweetener. But the seven years I didn't know, it was a hard time. Just saying this for all you out there who are using certain Toothpaste, Mouthwash, NO ADDED SUGAR drink for kids! They are a killer for the Nervous system. The only place where you can read what Artificial Sweetener does is in the manual for Pilots, they are warned not to consume such drinks as it can cause Seizure.
So sorry. Especially because you could have just did a low carb diet to reverse and cure diabetes
That sounds like a guess. Just because a child has an issue doesn't mean you did anything "wrong". That seems like a lot of guilt to carry.
Our society does not support these families nearly well enough. From the beginning. Youngest child I have treated? 8 days old. Birth trauma. What increases their pain? Social media that makes everyone's life look like a Hallmark card, fear of aging and disability, hiding away any challenges or issues because you should be able to cure yourself if you believe in Jesus or if you do the right things....we used to warehouse disabled kids. Really. I treated them as adults, in things called "developmental centers". People were told to put their kid in an institution. Well, we haven't made good on our promise to families to support them in the community.
Praying for this family.
I love callbacks!
Thank you for this call! ❤️ my family is currently going through the process of one of our kids getting diagnosed. My youngest child started having seizures shortly after birth. It has been a lot of learning and crying and very exhausting process. I feel so helpless and like I did something wrong. Waiting for genetic test results to come back. Anyway, this is a new world for me, new experiences, new appreciation for all of those families out there and always an appreciation for all of my children. This is not for the weak. ❤
I am so sorry for parents and families in this situation. God Bless!!!!!
Yes thank you for this! Let’s start talking about what really is in our heart ❤️
We used the vantage light talker, ProLoQue to Go on the iPad and PECS cards when my son was young and nonverbal with 22q (diGeorge syndrome). We did not have the Facebook groups and support therapies that back that we do now. Very important. Also journal it. Completely understand the emotions in this call. 🧡
My first ever family vacation was ruined because our "friends" couldnt understand that our autistic child made it essentially impossible for us to do all the things they wanted to do. We got alot of "we understand...but..." there cant be a "but". We cant just turn it off for an afternoon. Everything is a social obstacle course of what triggers him. Even crossing the street can be life threatening if he suddenly gets triggered and has an episode.
Great advice, Kelly! 😊
Great advice, Dr. John. You HAVE to be honest with yourself!! ♥️💕🙏🏻
This is such a good episode. So informative and so real. Thank u for the tips and wisdom.
I just want to say that I feel as though I really relate even though my children have relatively few disabilities, although there are some issues with learning disabilities and such. My children are spread out a bit in age and it has made going out on outings difficult because they never like the same things. I recently took my family to to beach, which was once the only outing everyone enjoyed. However, it was mainly me and my younger two who enjoyed the beach this time. It is disappointing at times because I envision these fun family activities and it rarely ever ends up as planned.
Yup. That's what life feels like. Struggling never ends one on top of another.
This one touched home for me...thank you, Dr. John!
Oh man!!!!! 😢just what I needed to hear. Thank you for this ❤
I think as a parent of special needs daughter that is turning 18 soon, and quite frankly I still get tired of my sister's adult children's accomplishments and the bragging and the rahooting. Sometimes I just want to throw my hands in the air and say please stop the ohh lala bragging.
Dr. D after he ends the call- Hey Dave!!! Get some better pens!!!
Anyone else notice the pen absolutely explode at 2:10? XD
😂
This is real. Nobody is completely 100% happy with having children with serious disabilities. It’s something you adjust to not something you wish for.
Waaaait!!! Both her kids have the same names as my kids !!! Wow 🤩 🥰
God I needed to hear this
His pen exploding is hilarious
God bless this family!✝️🙏✝️🙏✝️🙏♊
I feel the pain. Intense feeling. :(
Me too! It’s such a strong weight on our hearts
Hold on...and head up and I hear slot in your voice .Don't be scared ....look for support and I am trying to push my own self to stand for being all American girl and I have me.
John’s pen stole the show.
Yo thanks for returning call!
As a parent with a special needs daughter with epilepsy, I truly empathize with this caller.
Thank you. We did not go and my husband stood behind me. We sent her a "small check" because it was his sister's daughter (his neice). She's expecting a baby now, won't be going to the shower either, will probably be sending a "small check" again. That seems to be the only way to be "polite" in this situation. My husband did let her sister have it (I don't speak to her now) and told her off. She still doesn't get it.
Watched 1/9/2024….during a time a guilty. This has been so helpful and I’m grateful to Kelly. 😢😢😢😂😂
Sending you love-
My sister-in-law let us know that our niece (her daughter) is getting married. She said we would be all invited. We just received the wedding invitation and our special needs 20 year old son was not invited, just my husband and I. So I called her and she said he is not invited (no reason why they changed their minds). This is in another state also so there would be some expense to go there.I am so upset and NOT going. My son is very quiet, polite, and respectful. I don't think this would have been so upsetting if I wasn't told beforehand he WAS invited and now he's NOT. Thank god I didn't tell my son about the invite when she said we could all come! I just blocked her on my phone and I will never ever speak with her ever again. Everyone has the right to invite whomever they want, to anything, but this isn't ok. What are thoughts on all of this? This is the life of a special needs parent (being shunned).
i would not go either. Why would i wanna celebrate with ableist people. If my disabled child is not welcome, or better said, not seen as a person, a member of the family - then no. I will not be wanting to be part of a celebration or gathering that denies disabled people their full human rights. I am sorry this happened. You are not alone in this. It is f**king sad tho.
So did your SIL or your neice not invite your child? Was it both of them? A little clarity. I also think you shouldn't be quite and silent. I think you should be honest to your family why you aren't going. Let them all know. It's only then that people think. And you can learn who is fake or not. But also I would want to know what kind of family I am marrying in to. I think it would be one thing if your child would disrupt or not like to go, or they would have spoken to you about some accomidation. Just some acknowledgement and respect. But the way they went about it they don't consider your son family.
I'm so sorry this happen to you. Bless you my sister. You did the right thing.
I hope all the extreme religious Ramsey fans don't jump on me but try some CBD for the epilepsy, too many people have seen great results from this.
I'd try thc if they are in a green state
First hit thumbs up then watch 😉
I feel for Michele. As a parent with two special needs child and myself and my wife being dual military, I think I can say that I understand how our life f****** sucks. That's it no bulshit it just f****** sucks
My son is now 26 and this needs to be talked about more.. Having a child with special needs is TORTURE.. You get to watch the person yyou love most suffer.. And normal families b...c.. about myy child missed the ball at little league and our world is I just want my child to live.. I actually had a mom come completely unglued at bible study because her 7year old refused to mind her and ppick up his towel off the bathroom floor.. i had to get up and leave because of the rage that I felt at her pettiness
Dear Michelle, you get to be upset that your life and your family's life hasn't turned out the way other people's lives have with their children.
I've been there - Big Time -
So, Michelle, welcome to the Super Mom Club!
It's O.K. that you have a rough time with it. Because most other Mom's haven't been through it. So finding a support group for parent's with kids with disabilities would be good. Maybe the military has something like that. Better yet might be an online group of parent's with the a child with the same condition.
What you're dealing with is tough! What helped me for a time was a social service through my County called respite care. A trained person came into my home 4 hours a week, allowing me to get a break.
Between your County and the military, you should be able to get some "Me" time.
There are other military Mom's who are in your position. Maybe the military will help you get in touch with one another, because you will both have different versions of normal, while at the same time, you'll both know what it's like to not quite be able to fit in with other families.
More than anything else, bless you and bless your husband for your devotion to family and your willingness to continue doing your best possible job for your children!
I have a friend with a goofy son, and I know he’s not happy this was a good watch.
What is a goofy son??
You suck as a friend if thats how you refer to your friends son
@@l-train7876 Retarded, I think?
Don't worry, I resent normal families as a former special needs child too
Lord bless this woman. Children are a heritage from the Lord.
Well, depends where you were born...
@@nicolab2075 no it doesn’t - the truth is the truth
It is ok to be mad as long as we don't sin...Bible counsel.
Life is unfair and inequitable. You have to choose and create your life. No one owes you anything.
Reach out to your community and find support.
Literally no one on this call thinks anyone owes them anything. Your comment comes across rude and dismissive.
One typical millennial trait is being selfish. She is selfish. It's all me me me. What a horrible parent.
i think you dont get it. this is not about wanting your disabled child. This is about wishing the best for your child and knowing you will not be able to protect your child from the disease, the disability, the ableism and all the things they will not be able to do. And the things you cant do with them. Thats what you grief for.
And it is f**king exhausting, mostyl not coz disablities are so exhausting but because the world hates disabled ppl.
I feel so, so, seen and validated. Thank you so much for your vulnerability, Michelle and Kelly. In a very similar boat and feeling all of this so deeply. Grateful to know we are not alone. 🤎