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This mother of triplets writes about their life experiences, their 3rd triplet with Cerebral Palsy. She describes the struggles the child goes through, although not severely disabled, but the unfair situations that he is faced with daily.

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Mary is the mother of 3 children, a writer, and a medical and educational advocate for her middle son who was diagnosed at birth with Prader-Willi syndrome. She describes their lives with him and the balance between the other two children their medical appointments.
Oscar is 13 years old and "lives well with Prader-Willi syndrome and it's accompanying insatiable appetite, low tone, scoliosis, sensory integration issues, slow processing, learning disabilities, behavior challenges, and fatigue."

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About My Kiddos

Abe (15): Athletic, thoughtful and shy. Skillfully motivates and teaches his siblings everything from fractions to board games to goal-tending. After a "lifetime" of playing baseball he switched to rowing this past fall and is loving the intensity and challenge. He still watches baseball and umps baseball games, but instead of swinging phantom baseball bats in the living room during homework breaks he's pulling an invisible oar.

Oscar (13): Endearingly earnest and hardworking. Loves pop music and the Oakland A's....and saves every penny so he can someday "buy a zoo and live in a big house with his wife, children and five golden retrievers". Lives well with Prader-Willi syndrome and it's accompanying insatiable appetite, low tone, scoliosis, sensory integration issues, slow processing, learning disabilities, behavior challenges, and fatigue.

Ruby (9): Independent, athletic, and bright. Spends her free time reading, creating structures out of everything from cardboard to legos, playing board games and kicking her soccer ball in the house. Can entertain a car-full of high school rowers with her charm and jokes.

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Abe (15): Athletic, thoughtful and shy. Skillfully motivates and teaches his siblings everything from fractions to board games to goal-tending. After a "lifetime" of playing baseball he switched to rowing this past fall and is loving the intensity and challenge.

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"Connor has a submicroscopic, subtelomeric unbalanced translocation 46xy der t(1)(1;15)(q42;q26.2)-- an extremely rare chromosomal disorder."
Jess, the mother of Connor, writes her blog about their difficult experiences with his very rare disorder and the disabilities that come with it. From surgeries to every day routine, she describes their lives with Connor.

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Sometime during the night the IV blew and began dripping saline directly into the muscle of Connor's arm. Since he was asleep the whole night I was asleep too, and didn't catch it. The nurse didn't unwrap his arm to check it.

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"Family, marriage, Asperger's, PANS/PANDAS, special needs parenting..."
This author explains her life with her children with special needs. Her writing on Vaccines is a very interesting and eye opening read.

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One day when Riley was in third grade, I met her on the playground after school and she fell into my arms, sobbing.

"Why doesn't anyone like me?"

No one had made fun of her. No one had shoved her down.

But no one had included her. Lots of playdates happened every day after school. No one ever invited her.

Soon after, we started a monthly "circle of friends" group in our home. Initially, we talked about Asperger's, and how it affected Riley; her gifts and challenges. We talked about how those girls could support her as friends, and they did. They were awesome once they were given the tools to know what to do. We usually did one activity, and then had free time and occasionally I'd lead them in a guided meditation.

You've probably given your kids the "don't you ever bully" speech." Or even, the "stand up for someone if you see them being bullied," speech or maybe the "get help if you see someone being bullied" speech. But have you taught them how to include someone who might be struggling socially? Because excluding someone is bullying's cousin. If done deliberately I would go so far to say it is bullying. But like the girls in our circle of friends group, I think many good-hearted kids simply don't know how to include someone that doesn't easily jump right in.

It isn't just autism. It could be shyness. It could be anxiety. I have a friend whose sweet daughter (who happens to be chubby) was the only girl in her class not invited to a birthday party...in ELEMENTARY SCHOOL.

Even as an adult, excluding someone from a community has serious emotional consequences on the person being shunned. I'm not sure the popular people, people "social" comes easily to, truly get the long term ramifications of shutting out another human being. If it's never happened to them, they might not understand just how crushing it is.

I know when a group of kids ignores the presence of a quiet kid, they're not plotting, "I'm going to scar this person for life."

But it can.

It also scars their mother.

Teach your kids to be gracious and welcoming. To look out for the one who is struggling. Teach them to be kind and to have the common courtesy to acknowledge every person in the room. Offer them guidance on what they might say to welcome someone who is shy or holding back. It can be as simple as a smile, a hello to acknowledge their existence. A stepping back and widening the circle to include them in a group conversation. Lead by example. Compliment others that are gracious with new people, (in front of your kids). Let it be known that you value this welcoming quality in a person.

My child has worked all her life on developing social skills and it still doesn't come easy. She is so brave.

If your child were on a group hike, and sprained their ankle, and no provisions had been made for the injury..no choice but to soldier on, would it be reasonable to expect one or two kids to slow down, to maybe walk with that child? Might they even see some rich and beautiful scenery that would have been a blur had they kept pace with the rest of their classmates?

Would it be reasonable for those classmates to trade off? They of course don't want to spend all their time at someone else's pace, but could they go a little more mindfully for 20 minutes, and then let someone else walk with that classmate? Might they recognize and honor the one that is working harder than any of them, just attempting to keep up?

Would it be okay with you, if your kid was part of the group that ran ahead and left that child to limp for miles, alone?

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One day when Riley was in third grade, I met her on the playground after school and she fell into my arms, sobbing. "Why doesn't anyone like me?" No one had made fun of her. No one had shoved her down. But no one had included her.

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"This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information."
The mom of 3 children writes about her twins (A boy and a girl) BOTH of the autism spectrum. She explains what learning techniques they have tried and making sure they do everything possible so that they can live normal lives.

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It has been too long since I wrote anything here. But I'm not going to worry about that right now. I'm starting over again. My kids have all gone back to school for the start of 4th grade and 2nd grade (WOW! Where has the time gone?!?!?) and I'm getting back to doing what I was doing when I was happiest. I'm going back to blogging, advocating and getting myself into a positive way of thinking.

It's not that I've been "UN"happy......quite the contrary. But there's been something missing from my life lately that I need to take back. And sharing my stories here really seems to help bring all of that back into perspective.

So......where was I.....oh, yeah.....first day of school.

This year is going to be a very interesting one for my family. Firstly, we are INSANELY busy. During the week (after school afternoons and evenings), Big Brother has soccer, hebrew school (as he begins to prepare for his Bar Mitzvah), and gymnastics. Additionally, he plans on trying out for the talent show (which he has performed in the last 2 years), joining the chorus, beginning instrumental music (targeting trumpet as I think it suits him well) and (if we can swing it) joining the "Running Club". Rachel will have 2 different dance classes, girl scouts (she's a Brownie now), and soccer (2x/week). Simon's activities (as they currently stand) are all on the weekends. All 3 kids will be attending Sunday School (Big Brother went last year, the twins will start this year) and Big Brother and Rachel will have soccer games on Saturdays. Simon will have his dance class on Saturdays as well. And, once a month, if we can manage it, they will head over to Home Depot to do "projects".

Dad and I made a realization yesterday as we were talking after breakfast.....a family dinner is a thing of the past during the week around here. We will be able to pull it off on Friday evenings and periodically over the weekends but that's really it. So we are trying to find other ways to make sure we spend quality family time together this year. More on that as we figure it out.

But back to school.....

Big Brother is doing his own exciting thing this year....he's heading on the bus to the Middle School for math classes. It's not as advanced as that sounds....it's combining 4th and 5th grade math into a single year so that they are ready for more as they get older. They are doing this at the middle school because a small number of students from several schools are doing this together and this was an easy location for such a program. He has never taken the bus to school before. To say he's excited about it is a gross understatement. This program will begin tomorrow. He will have to catch the bus at the elementary school shortly after 7am (he doesn't normally get up until then) and he will be bused back to school in time for his elementary school day to begin. He is very excited about going on the bus. He's also excited about being a member of the school's patrol. This is something that is only for the 4th and 5th grade. It seems to be a mark of distinction and all the students seem to want to be invited to join. When his name was called last year, he was a VERY happy boy. His year will be interesting, to say the least.

Rachel and Simon are also back to taking the bus to school. Simon's teacher last year strongly encouraged this. Even though we live less than 1/2 mile to the school, having them come independently would do wonders for their day and really get them off on the right foot. So, we agreed. We waited for the bus today and they got on happily and (I learned from my spies at the school) they arrived with smiles and ready to begin the day. I know very little first hand about Rachel's teacher this year, but she is working with the same 2 para-educators that she's been working with in the past. I have been told that this teacher can set clearly defined limits which is something that Rachel needs. If Rachel has a good first week, I'm positive it's going to be another VERY successful year for her.

Simon is a little bit more questionable. He has been with the same teacher these last 2 years. This year, he is in a fully-Grade 2 special education classroom. And he's with a teacher he just met last Friday during the school open house. This teacher appears to be very nice and seemed to interact well with Simon and has been filled in by his previous teacher with his many antics and idiosyncrasies. But his progress is always more gradual and we'll have to wait and see what the year will bring.

But all 3 kids left for school this morning. When they left, they were smiling, and I know at least 2 of them were smiling when they arrived. I will be picking them up in just a little while (after I finish writing, although it won't be published until later) and I'll get to hear how the day went. Hopefully, they will be all smiles still and ready to head back to school again tomorrow.

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This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information.

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"A mother with three beautiful boys. Two are typically developing and one has a rare mitochondrial disease. He is why I write." -
This blog hit my soul and brought me to tears from the first post. This mother of Dermot (her son with BPAN: Beta-propeller Protein-associated neurodegeneration) describes their daily lives and struggles with his disability.

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My quiet panic that lives beneath my sense of well being is slowly creeping to a low hum. My heart is beating a little faster and my insomnia is getting in the way of a good night's sleep.

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"On raising a son on the autism spectrum, progressive politics, pop culture, and coffee addiction."
Her son, BUD, is the child she write about in her blog. She explains her feelings and concerns about Bud and his future. Her latest post is about her sons right to vote once he reaches 18 years old, as well as politics and policy changes that will effect his future greatly. She also provides great readings and resources about special needs, policies, and laws/regulations.

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Free weblog publishing tool from Google, for sharing text, photos and video.

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"A community of millions of Scary Mommies supporting each other through laughter, empowerment, and the shared experience of motherhood."
In the Special Needs category of the blog, parents of these children post their experiences, inspirational stories, and resources for parents.

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Raising a special needs child can be challenging at times, but it can open up your life and heart to boundless joy and love.

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"Living the life with a son on the spectrum who proves that a side of fries makes anything better." -
Chase is their son who is the inspiration for their blog. His parent's stories about the experiences with Chase are honest and real. They also discuss his IEP and placement, helping parents understand what the process can look like... not always rainbows and butterflies.

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I think it's safe to say we all came up with new coping skills in order to maintain our sanity during lockdown. Kiddo is no exception. As the world has started to reopen, I have seen there are a lot of skills that he previous had that have gotten rusty. Like eating out. Oy vey, he went from a kid that would gladly eat out for every meal of the day to one that is like "We can't get this to go so I can eat fries in my pajama bottoms like the good Lord intended?" We're working on it though because my husband and myself very much like NOT COOKING and we are slowly seeing progress with that again.

But man we have hit a wall hard with Sundays. All the sudden we have seen Kiddo become extremely fixated on Sundays. I have always joked that you better have a plan for the weekends or he'll make one for you and it will most certainly be expensive. While that still stands for Saturday, Sunday has become a routine around the house that is NOT to be messed with.

And as routines go, it's not really disruptive or outrageous. It centers around that the mail isn't delivered on Sundays. Which as you can imagine is a bit of an odd thing to fixate on when you are a kid that doesn't pay bills. So why the focus on it? Well, maybe it's the fact that it comes all the other days of the week. Even during the peek of COVID, he could count on the truck rolling down the street. We also made it one of his jobs to go out and get it, which again, lockdown. Other than walking the dogs, it was one of his few outings he could count on.

In turn he started to hyper fixate on what WOULD happen instead. What he could control because despite his campaigning, I was not able to get a part of the Federal Government to make the mail come on a Sunday. (I know, I know. It's like I didn't try.)

So it became about certain CD's that he would listen to at certain times throughout the day. (Yes, CD's. Yes, we have an Alexa and all the streaming stuff you could want. He still loves CD's. #BecauseAutism) Followed by certain movies he "script watches". What's that you say? Okay, have you ever been to a Rocky Horror Picture Show at midnight? It's kind of like that but with less garter belts and slices of toast flying through the air. (If you have never been to a midnight showing of Rocky, I urge you to correct that situation.) He will utter every line in the flick and reenact every scene right in front of the TV. It's actually quite impressive and highly entertaining. Then there are certain books to read, games to play, etc...

In a lot of ways, this is good. He keeps himself busy. It clearly soothes him. It's a day off from school and therapies. He should spend it doing the things that he likes.

But in other ways, it's hard because he now refuses to leave the house on a Sunday and like it or not, sometimes we have stuff to do. Plus, I cannot leave him home alone to do these things like a parent could of a typical seventeen year old. We try our best to accommodate and it's clear he very much NEEDS this routine right now. Like all things with autism, I have learned to just go with it. It will pass but it's sometimes very hard to watch your child struggle.

Just this morning my husband offered a trip to the beach for Kiddo and the look of sheer panic that went across of his face broke my heart. We tried to show him where he could fit it into the schedule but we realized quickly it was not going to be pretty if we attempted to this outing. On any other day he would be the first one running to put on his swimsuit and grabbing a towel to go. My husband and I were then stuck in the grey area of knowing he doesn't want to change the schedule but he also loves that outing. I could see Kiddo start to sweat. I knew immediately this would result in a meltdown. He just didn't know how to communicate to us "I want to go but not today."

And this is where it gets tricky because I don't want him to think we are taking away this thing that he loves because he just doesn't want to do at the moment. Thhen he will fixate and meltdown over it. I have to show him it's okay to say "No thanks!" I talked him through it. He quickly latched on to "Beach is finished!" despite not having gone to it at all. Whatever, it somehow calmed him and kept him from melting down. Although I suspect the use of his emergency anti anxiety medication that I wound having to give him helped too.

He is currently hiding in his room as I type this. Very much avoiding us. I am sad that just offering something that should be fun stresses him out so badly. I am worried that for many Sundays to come he will bring up "Beachgate". (How dare we?). I feel bad that my husband just wanted to do a fun thing for Kiddo that in the past he would be very happy to do. The fact that someday he may just decide "I'm not doing this routine anymore" just kind of kills me because that's usually how stuff like this goes. He just decides he's done with it and we'll have to learn as we go whatever it is next he does to self soothe.

I know this is the aftermath of COVID lockdown. Never did I ever imagine that I would have to give my son his anti anxiety meds because of a beach trip suggestion but here I am on a Sunday morning listening to him sing "Thomas' Winter Wonderland" at the top of his lungs because apparently it's the time of the day we do that now.

Flashback to a day at a beach. Clearly not a Sunday where one must sing the entire Glee catalog.

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I think it's safe to say we all came up with new coping skills in order to maintain our sanity during lockdown. Kiddo is no exception. As the world has started to reopen, I have seen there are a lot of skills that he previous had that have gotten rusty.

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"Help and Hope for families of disabled & autistic children" - This mother of daughters with disabilities has been blogging since 2002. She has many health, social, and emotional resources for parents especially those with Autistic children.
"Learn what your doctor won't tell you about food & medicine, discover real solutions that help your kid and relieve daily stress."

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Embracing Imperfect is a participant in the Amazon Services LLC Associate Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.

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Embracing Imperfect - Helping Moms Raise Kids With Special Needs

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Embracing Imperfect is a participant in the Amazon Services LLC Associate Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.

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This blog page is a congregation of multiple bloggers that come together to discuss each of their questions and concerns about their children with special needs. Parents can find tons of great information as well as similar stories to their own for support.

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grassroots support for parents of kids with special needs

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The Wrightslaw Way To Special Education Law and Advocacy - Blog

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The Wrightslaw Way To Special Education Law and Advocacy - Blog

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This blog is an amazing resource for parents to find all law and advocacy information which is why I placed it first. There are hundreds of posts with useful resources, webinars, and updates for parents to keep on top of current information and events. They can also leave a reply and ask questions on any post. There is a helpful table of contents of the most popular topic parents should know about.

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"Does my child need an IEP for speech therapy and tutoring and a 504 Plan for accommodations and academic interventions?" No. Your child with a disability does not need an Continue Reading →

In May 2020, Dr. Roseann Capanna-Hodge invited four special education attorneys to a webinar for parents, "Special Education in the COVID-19 Quarantine." The attorneys, Pete Wright, Jack Robinson, Piper Paul, Continue Reading →

Posted in Advocacy, Attorneys, Compensatory education, Coronavirus, Discrimination, Education Policy, ESY, Extended School Year (ESY), FAPE, Parent Rights & Responsibilities, Parent-School Relationship, Related Services, School Administration, Special Ed Law, webinar |

Quality special education services are intensive and expensive. Resources are limited. If you have a child with special needs, you may wind up battling the school district for compensatory education Continue Reading →

Can a school refuse a service dog for a child with behavior and emotional disability because they do not allow any pets? The school does not want any animals on Continue Reading →

Spencer East Brookfield School District (MA) terminated a paraprofessional with knee and shoulder impairments after she requested to be excused from a new district policy requiring paraprofessionals to be trained Continue Reading →

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special education law advocacy idea learning disabilities

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summer reading sale wrightslaw products advocacy skills download trainings special education books

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americans with disabilities education act

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individuals with disabilities education act

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"Does my child need an IEP for speech therapy and tutoring and a 504 Plan for accommodations and academic interventions?" No. Your child with a disability does not need an Continue Reading → In May 2020, Dr. Roseann Capanna-Hodge invited four special education attorneys to a webinar for parents, "Special Education in the COVID-19 Quarantine."

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National University
SPD - 631 Special Education Law
Professor John W. Davidson