specialneedsmom

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    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!

    themighty.com/groups/parentsofchildrenwithspecialneedsanddisabilities

    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 :)

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    “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

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    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.

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    im completely down in all places of life

    Rant:
    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

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    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

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    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

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    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