Step into the shoes of a special needs parent

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  • Post last modified:July 10, 2011

I want to help people have a better understanding of what it’s like to raise an Autistic child. Not every Autistic child is the same and not every Autistic child will meltdown the same way. However, for many of us, this is a reality we face every single day. Many times this happen several times though out the day. This can and will happen at home and in public. A lot of the time there is no rhyme or reason for these meltdowns but they will “usually” be tired to over-stimulation, stress or anxiety.

My goal here is NOT to paint Autism in a negative light but instead be realistic and honest. These meltdowns are just one small piece of the puzzle that makes up an Autistic child. In this video my youngest son, Emmett is melting down. Emmett suffers from severe speak and language delays and so we work with a significant language barrier. This makes communication VERY challenging, especially when he’s distressed. Here’s what happened. Emmett had a balloon and wanted the string cut off. He screamed until we figured out what he wanted and then screamed after it was cut. There was no making him feel better. It took a considerable amount of time and energy to help him defuse or de-escalate. This video only shows you 4 short minutes of this particular meltdown. Now imagine having to do this several times a day, EVERY day, in both public and private settings. This will also happen when trying to get him dressed. He can’t stand the feel of clothes on his skin. How long do you think you could keep that up?

As special needs parents we are doing this every day and many times, with little to no outside help and certainly no breaks. There are many AMAZING qualities that Emmett (and other Autistic kids) possesses but this is just one of the many challenges we face helping him to reach his potential. Hopefully this will give you a bit of insight into the plight of the special needs parent. If you know a special needs parent(s), it’s likely they may be facing similar struggles. Perhaps this allow you to better understand where they are coming from. As special needs parents WE NEED HELP but many times will not ask…..Food for thought.

[youtube]http://www.youtube.com/watch?v=IRq5f0QC1qY[/youtube]

Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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basekamp

EVERY day. My son is more quiet than most, given his trach but he still melts down and cannot be consoled or re-directed for extended periods of time- sometimes for having his milk cup moved to the table by a nurse instead of me. Good times. Hugs today & always.

Lost_and_Tired

Right back at you my friend. We all need to stick it together.

Stephenie

I can so relate to this post. I could never count the number of similar tantrums we've been through in my home. Thank you for sharing.
My recent post Deviation from the Routine

Lost_and_Tired

Your very welcome. My hope is that these things will help people to understand better what we experience as special needs parents.

gemmauk

sorry made spelling mistakes in first comment,pls delete that!!!
sorry can't find any delete button only a close button!

gemmauk

hi,
i can totally relate to this,my sons nearly 7,were in the UK
had extreme tantrums over small things since around 2,very similiar e.g other day,my partner threw my set of keys down as locked out,son went mad,for 10 mins,then he got keys and threw them back out himself when i got in,'i needed to throw the keys down' said,won't let things go
in mean time my sons very high pitched so he's yelling unfortunately live in flats,not massive block,but bad enough lol
so ppl are like what's that noise,is embarassing,but these 5 -10 mins fits,happen over very small things copule times days more at weekends think,whens at home and not school,else be all day sometimes,and worse part don't know lot time when its gonna happen
ethans has traits from age 2,spinning,in own world,headbanging,obessive over small things,lining things up etc,loves trains but some parts get broken off Present fave,
toy story 3 lego train at moment,and he goes mad when little bits fall off of it,lol,bought one week ago,and lego bits fall off all of the trains carriages all time,it's not very well made.

we are going thro long process,still no official diagnosis on paper 6 month at a time child development appointments,currently going thro getting my son special education needs,statemented,which has taken 7 months,and in year 2 so been there 2 years,but this hasn't happened for us before

tbh were e/g sending ethan when he naughty up to headmistress all time,
not happy with but they tried to put it on ethan making things up,i said no he was scared night before about going in to see headmistress
not really dealing with things in an autism friendly way so after 2 years looking to find a local more special needs orientated school
when we get the needs statement form fingers crossed,may have appeal if funding doesn't go thro.

mlike to be at school with kids with similiar autistic traits as eth,to be honest,
so he's not only one in his class,etc does feel at times,that your only one,and nobody's elses kids are freaking out over stuff your child does,but they are unique and love him just same,just so hard people's reactions every day,looks etc does bring you down some days so know what challenges were up against in society at times.

thanks for your blog came across on facebook page,worthwhile to read other parents with similiar
hoping you all havea good day

gemma

i can totally relate to this,my sons nearly 7,had extreme tantrums over small things,very similiar e.g other day,my partner threw my set of keys down to me,he went mad,for 10 mins,then he got keys and threw them back out,like i needed to throw the keys down,wouln't let it go,til had done it,in mean time my sons very high ptiched so he's yelling unfortumately live in flats,so ppl like what's that noise,embarassing,but these 5 -10 mins fits,happen over very small thing,and worse part don't know lot time when its gonna happen
ethans has traits from 3,obessive over thing,lining things up,loves trains but soem parts get broken off toy story 3 lego one hes into at moment,and he goes mad when little bits fall off of it,that toy stroy 3 train is curse lol,bought one week ago,and lego bits fall off all the trains carriages in it,so nightmare,course he wants it fully set up like the box.
we are going thro long process,still not got diagnosis on paper 6 month at time child development appointmennts,currently going thro getting son special education needs,statemented,which has taken 7 months,and in year 2 so been there 2 years,but with example spitting,anger outbursts at times, and not wanting ethan to be bottom off class,work wise, he likes physical stuff thrives in what he enjoys but can't do wiitng e.g ..making the decision hopefully get put atm ore understanding school that has other kids with similiar autistic traits as eth,so he's not only one in his class,etc does feel at times,that your only one,and nobody's elses kids are freaking out over stuff your child does,but they are unique and love ihm just same,just so hard people's reactions every day,looks etc doesbring you down some days so know what challenges were up against in society at times.

thanks for your blog came across on facebook page,worthwhile to read other parents with similiar
🙂 hoping you all havea good day