Join the Conversation on
90 people
0 stories
6 posts
Explore Our Newsletters
What's New in

Calling all parents of kids with special needs and disabilities!

Hi there, I've just created a group for parents of children with special needs and disabilities.

I'd love you to join!


I have two adopted children, one of whom has special needs. We're in the process of an autism assessment at the moment.

I'd love to connect with other parents and caregivers with similar and different experiences. I've made it a closed group because I think it's important that we can share and encourage each other in privacy.

#SpecialNeedsParenting #SpecialNeeds #Autism #Parenting #SpecialNeedsParent #specialneedsmom #autismparent #disabledchild #raisingadisabledchild #Children #Child #autisticchild #Carer #ADHD #childmentalhealth #anxiousparent #parentanxiety

Please join... I would love to meet you and hear your story :)

Parents of children with special needs and disabilities | An Online Health Community

This group is a safe place for parents and caregivers of disabled children and children with other special needs to come together, encourage each other, and share insights, wisdom, thoughts and questions.
2 reactions
See full photo

“Oh cool! You *get* handicap parking because of him?”

Thanks to the Valentine’s holiday, our school’s parking lot was much busier than usual for pick-up. The handicap spaces were taken, so I parked our swagger wagon with the other cars next to curb, making sure I left enough space to be able to load up the adaptive stroller, trilogy, walker, etc.
“Wow! It’s busy! Even the handicap spots are full today.” (Me, making awkward small talk.. as moms do.)
“That’s so cool that you GET handicap parking *because* of him.” (Other mom... probably also feeling awkward.)
While my brain registered the shock followed by passionate and witty responses that never made it to my mouth- I heard my voice explaining that it’s not for me. “It’s FOR [not because of] my son, who can’t walk far.. and sometimes can’t walk at all. It’s because he has so much equipment. He uses oxygen and needs a machine to breathe if he sleeps. It’s because his doctor thought it was help...” the explanations went on. I know I didn’t have to justify the parking situation, but I felt compelled to. For some reason I also felt compelled to add that we park far away when there’s enough space if we are using the stroller. Was I angry that this mom thought having a child with disabilities came with perks? Or maybe I felt guilty- because I don’t have a disability, and I’m the driver? I don’t know... but I do know that being able to park closer is *for* my child. It’s not a perk. I’ve never felt personally “lucky” using it, or lugging around a van full of equipment to go anywhere. I’d rather park in the back and have my children hold my hands as we skip on the concrete towards the far away store, but that’s not how we roll... and that’s okay. I’m grateful for my children and I love them more than anything. I’m lucky to have them and be their mother. *They* are perks. Parking isn’t. Having multiple therapies a week isn’t. Spending hours on the phone, emailing, scheduling, etc. isn’t. Hospital visits aren’t. Medications aren’t. Non-invasive ventilation is certainly not a perk. No sleep=not a perk. Equipment all over the house isn’t a perk either. Watching my child cry because his legs don’t work... you guessed it. Not a perk. We “get” a lot of extra stuff FOR our child... and most of it isn’t anything to be jealous of. 100% be jealous of my amazing beautiful children- I don’t blame you. I’m a lucky mom and blessed human being. But please- don’t assume I’m using my child’s disability to avoid walking 30 extra feet, or enjoying the parking perks. Thanks. #specialneedsmom #HandicappedParking #RareDisease #Hypotonia #PeriodicParalysis #AirwayDisorder #MobilityAids

1 comment

beating yourself up #Anxiety #Motherhood

I'm lying here in bed next to my partner who is blissfully #Snoring so loud the neighbors can hear and I can't #shutmybrainoff and #Sleep . All of my #Parenting #Failures for the day are running through my head full speed ahead. Being a #specialneedsmom is not for the weak, but I do not feel strong or competent. Every day is one fuck up after the next. Balanci6his #ADHD #Anxiety #Depression #OppositionalDefiantDisorder and #PTSD is a delicate balance in a #Child especially one with #Trauma . I may never get it right, but I'll die trying.


im completely down in all places of life

Currently trying to deal with being a mom of two children, one who has special needs. Along with having my health take a turn for the worse, in which after two years of doctor's visits I have no diagnosis/direction to go from.
I'm trying to still work which has already seemed nearly impossible , even when my health wasn't an issue. Since I've seen more and more symptoms arise and been told a slew of different POSSIBLE diagnosises. It only feeds my self hate, and anxiety, and depression to a place where I have been seeking help with that as well. I still haven't found meds that have regulated any of my anxiety/depression issues, have tested many.
I'm at the point where I have to pull the plug on working but have no idea on what to do about that. It was a year ago next month where my job had noticed that my state that I was in wasn't helping them or me, they offered another position with their company( I was eternally grateful I even had the choice), but now I'm at the point where I'm constantly getting my days covered and can't handle the easier position.
what the hell am I supposed to do from here? I don't want to go on disability, and I don't even know how. I loved being independent.
sorry for such a negative rant but I'm definitely in a negative place. #Depression #PTSD #specialneedsmom

1 comment
See full photo

Anxiety/Stress Relief through Coloring/Music

This is my first post so please forgive me if I am not doing this right or not explaining as concise as I should. I’ve struggled with panic attacks and overwhelming stress from the moment my daughter was born and immediately trached, to 9 days old and got a feeding tube in her belly, and all the many other surgeries she has gone through in her 4.5yrs of life. She isn’t done and most of the surgeries are out of state because she is a rare case.
My sister did a simple thing, she sent me a stress relieving coloring book and some pencils. It was a simple task but it made a big difference. Being alone with my baby girl for 4 months (she was 12mo at the time) would have been harder for me to handle if I didn’t have a way to take my mind off of the stress. Listening to music and coloring works much better for me than tv and movies plus I didn’t have my hands free to munch so I didn’t stress eat while I colored. I have been on several long trips like the first one and I bring my coloring book with me. It doesn’t help as much for me when I am home with my husband and two kids but during the months away with my daughter, it has made a huge difference. I like fine tip markers better than pencils but that’s just me. I am sure this won’t help everyone but I hope it helps someone. #AdultColoringBooks #stressrelief #ParentsOfChildrenWithSpecialNeeds #ArtTherapy #specialneedsmom #TrachMom #tubiemom #ChildrensCraniofacialAssociation #CraniofacialDifferences


Suicidal thoughts.. selfish? Or not?

My brother attempted suicide when he was 18. My family all struggled, but I remember feeling so overwhelmingly anxious that he would try again. I dedicated myself to making sure he wouldn’t. But then my life became unraveled. I’m a psychiatric nurse and ironically became so blind to what was in front of me, an abusive father to be. My then 7 week old son was shaken by his dad and has since been suffering from so many medical problems. I have the worst support system and more often than not, felt extremely alone. I have thought about ending it, that is how horrible,guilty, ashamed, feelings of being a failure, a bad mom, and disappointed in myself I am. I hate this is the life I gave my son. I think a lot he would be ok with my parents. I am in so much suffering I reached out to a “friend” and she called it selfish to have those feelings. I can’t help it. I love my son soooo much, but I hate that I feel so angry and sad that I’d rather not feel anything. I feel like I caused this to my son and for that I hate myself. Is it worth living in pain and not be selfish to your family ????? #Depression #Suicide #specialneedsmom

1 comment

You should know that most trees return to life

When I am struck by a tree

In a popup storm

Because I went outside

To help my Seasonal Affective Disorder

You should know some things

Watch how much epinephrine

They give me while trying 

To hold my soul bound

I don’t want to wake up

With leaves in my hair

Completely manic

You should know that

My youngest son calls his 

Favorite healthy chocolate chip bar

Pirate bars, because that’s what

They are on Halloween

You should know that 

My oldest son requires

Weekly feeding therapy

And I don’t believe in fad diets

You should know that

My children require 13 hours 

Of weekly therapy

And if you have a problem with 

The number 13 I assure you

There is no bad luck in

Coping skills and therapies

I never had

You should know that 

I color pictures for my anxiety

And hang them in my room

I want those tucked around me

Like comforting wastes of time

That aggravated my carpal tunnel

And only distracted me from my TV show

You should know that

High blood pressure runs

In my family and every 

Shake of a salt shaker

Brings back memories

Of my mother ruining a pot

Of mashed potatoes and 

The VA forgetting to 

Refill my Papa’s prescriptions

You should know that

I have self esteem problems

And I’m buried under the

Weight of identifying my heritage

Finding my identity in the midst

Of disorders and drowning as

A mother and a woman

A woman that experienced

A Titanic amount of hormone surges

During pregnancy and now needs

To shave almost every day

You should know that

If you don’t want to 

Remember all of these things

Stop telling me to go outside.

(Also there's a hurricane here so...) #SeasonalAffectiveDisorder #BipolarDisorder #specialneedsmom #MentalHealth