parents of children with special needs

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Ableism within the autism community

Don't take out your frustrations on your child's disability. I wouldn't get rid of my autism if I had the chance to #Ableism #Autism #ParentsOfChildrenWithSpecialNeeds #Parents #InternalizedAbleism #AutismAcceptance #actuallyautistic


Sleeping fully clothed

Ever sleep with your child to calm them down while you are fully clothed.? Then, wake up the next morning and jump into everything and wear those same clothes again? Me, last night and today. Worst of all? No one cares or asks how they can help. Not my husband or anyone I saw yesterday and again today. I hope it gets better. I did take a bath tonight and put on pajamas—a better start for bedtime!

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Sad for Present and Future

I have no one to vent these thoughts to, so, I am posting here. I am sad that my daughter’s life is hard and limited. I am sad that my life is hard and limited to being her caregiver. I am, at best, an “okay” caregiver, going from bad to good, then back again. My sleep is irregular because her sleep is irregular. I am sad, afraid, and angry that there are almost no supports & services in this state for adults with IDD. I am sad that she developed Regression which lowered her skills and now is taking meds daily. And with every extra need she has, more doors close for her and me. I often feel there is no hope for her future which is also my future. I feel she is trapped and I am trapped. No hope, Few to no options. How can you focus on today only, when, you have to CREATE the future for your child? No point and no hope. She is between “low functioning” and “middle functioning” and needs help in restroom due to a colon disease plus regression, and meds 4 times a day. Very few options. She is pleasant mostly, so I am grateful for that. Going through motions with little to no progress. Where to turn?

#ParentsOfChildrenWithSpecialNeeds #sad


So frustrating and scary

My 16 year old doesn’t learn when you tell him something. It’s so scary that his brain can’t retain any new information even simple information. How is he going to independent? Ugh I just want him to be okay. 🙏🙏🙏 #ADHD #ParentsOfChildrenWithSpecialNeeds

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Parent + Caregiver Summit: Children with Disabilities Edition

The moment I realized if not me then who, I knew it was my calling to bring together experts in the different areas in our lives to help us so that we can help our kids.

The topics are as diverse as the lineup. Everything from meals, to creating an online business, to unschooling. If you're interested check it out. The event is free and I'd love to see you there!

#ParentsOfChildrenWithSpecialNeeds #Kids #Caregivers #Parenting #Disabilities #SpecialNeeds #medicalneeds


#ChronicFatigue , #Fibromyalgia , #ParentsOfChildrenWithSpecialNeeds

So tired this morning. Absolutely bone weary. Kids are sleeping in, I'm awake and exhausted but can't sleep anymore. I will take a nap later. Just tired of being tired that no amount of sleep can be.refreshed. I have a day of helping my children regulate their emotions ahead of me. We were using 4,6,8 (4,7,8) breathing yesterday. What are anyone's best pick me ups that don't include caffiene?

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My 17 mo old has mild weakness on his right side due to stroke in utero. Working with speech on eating solids but feeling overwhelmed. Tips? Advice?

#ParentsOfChildrenWithSpecialNeeds #eatingsolids

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The Decisions We Make

My daughter Em, short for Emily, has cerebral palsy. She had eye surgery last week and it reminded me of the first time she had surgery for her g-tube when she was four months ago.

Today I published this story about those experiences:

#CerebralPalsy #COVID19 #Surgery #Parenting #ParentingSpecialNeeds #ParentsOfChildrenWithSpecialNeeds

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Nursing and in home care during COVID-19

Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

Thank you for sharing your stories with me here.
#CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE


McDonalds Was Mean to my Special Needs Students

I teach special education in a self contained setting. My job is truly my passion. I not only love what I do, but I LOVE my students. I spend 9-3:30 with them Monday through Friday and there are very few things I won’t do for them. Advocating and being their voice is one of those things I do for them.

My school is in a suburb of Chicago. We had planned a community trip to the pumpkin patch on Halloween, but the weather did not allow for that. My heart broke thinking about how sad my students would be. I decided to switch some things around and go to McDonalds instead. At McDonald’s the students work on skills we teach in the classroom. Some examples would be ordering food, waiting in line, and parking lot safety.

When we got to McDonalds the manager was so rude and told us that if we wanted to come eat there we should have called and asked them. Side note- there was one other person in the restaurant. He then rudely told us that if they wanted kids meals it would take them at least 45 minutes. Again side note- I had ten kids. It’s McDonalds- shouldn’t they be able to accommodate 10 kids meals without making children feel bad for showing up?

The man continued to be rude not only to us, by also to the other employees. I was in shock.

If you have a child with autism or work with children with autism you know that letting them play in the play land and then trying to explain that they have to come sit and eat after would be near impossible. We spent our entire time waiting for them to make kids meals. I felt awful and the kids trip was ruined. Not to mention they over charged most of the children for extra drinks.

I contacted McDonalds many times. I kept being told someone would call me back. The only person to call me back told me she was sorry for my ‘perception’ of what happened. I am sick to my stomach that a company so large and well known is okay with this treatment. I still have yet to hear from McDonalds or at least anyone that actually feels that this behavior isn’t okay. Please share in hopes that someone from McDonalds cares and helps raise awareness.

#McDonalds #Autism #Autism #AutismAdvocacy #SpecialEducators #SpecialEducation #SpecialNeedsFamilies #SpecialNeedsParent #SpecialNeedsPrograms #SpecialNeedsCommunity #Disability #RespectAbility #HunterSyndrome #GeneticDisorder #InclusionAndSpecialNeeds #BeKind21 #ParentsOfChildrenWithSpecialNeeds #DisabilityAdvocacy #IntellectualDisability #Teachers