Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

Tag Archive: parents

Dec 15 2012

Life is a balance


Lizze family has an annual Christmas Party and this year it’s today. Typically, we don’t go because we have the kids and as you probably know from your own experience, that doesn’t always go well. 

These types of events are generally considered to be overstimulation



However, this year we have decided to let Gavin go and spend time with his cousins. Lizze‘s parents want to take him and so the fallout, if any, will be their to deal with. 

Part of the reason we decided to okay this is because we’re starting to look at things a bit differently. 

With Gavin, we are looking at quality of life issues. 

With everything he has going on with his health, no one knows where he’s going to be in the future. Gavin is still accountable for his actions but we are going to be more flexible with things he’s allowed to do. This is of course, pending good behavior.

Lizze and I will be trying to make an appearance tonight as well. 

Lizze wants to spend some time with her aunt and I’m in total support of that. 

The boys however, will be with my parents because it’s best that we shield them from as much of this possible.

I hope that tonight goes well for everyone. In this case, the end justifies the means. Life is a balance. Trying to ensure that balance can be exhausting to say the least. Sometimes, it’s best to throw caution to the wind and do take a leap of faith. 

Does that make sense?

Permanent link to this article:

Aug 11 2012

Trouble in paradise…already


Already had issues with Gavin this morning. Not listening and trying manipulate his brothers. Elliott and Emmett are going to Lizze’s parents for the night and we were supposed to go to my parents for pizza tonight. However, we told Gavin that because of his behavior, we would not be going to grandmas and therefore not have pizza for dinner.

His reaction was that he didn’t care.

It appears as though we did a better job of punishing ourselves than him. However, if we back down….we just can’t back down.

I suppose we could be a bit more creative. Maybe we still go but he doesn‘t get to eat pizza but instead has oatmeal. That’s a bit more aggressive than I was planning on going with this. Plus, he would likely freak out and ruin it for everyone else.

What to do, what to do………

Permanent link to this article:

Jul 21 2012

Walking a mile……


Elliott is with my parents,  in Cleveland this morning. He entered into his first ever marathon. He had a little number out ned to his chest and everything.

He walked 1 mile,  with my parents and his great grandfather.

I’m so proud of him and he did such a good job. This has been the highlight of my day.  I wish I could have been there but I had other obligations.

Elliott,  Daddy is so proud of you.  Great job walking with your great Grandpa. :-)



**Thanks for reading**

       -Lost and Tired

Please join our Autism Help Forum

Look for “Autism Help” app at the Google Play Store Registered & Protected

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

Permanent link to this article:

Jun 07 2012

What about respite care?


In the decade or so that my wife and I have been special needs parents,  we have never had respite care. People ask me about it all the time and want to know why we don’t have it.  Well,  it’s complicated but I want to explain probably the biggest reason we don’t.

Most people probably think that we would kill for respite care. The truth is that while we would benefit from respite,  it’s just not that simple,  at least for us.

There’s something that you need to understand about being a special needs parent.  Please understand that I mean you in general.  I know many of you out there understand this.  :-)

We looked into respite many years ago,  when Gavin was having upwards of 6 or 7 huge meltdowns per day.  Yes,  I said per day.

The problem that we found was that no one was qualified to deal with a child like Gavin.  What we were offered was deemed unwise by all of the doctors and specialists involved. It was a situation that no one was comfortable with.

Since then,  there have been funding issues with DD (previously MRDD).  Gavin lost his waiver and we lost contact with his SSA rep. To be honest,  things have never slowed down enough to really revisit that.  It would take some time and energy and truthfully, we have had bigger priorities,  especially in the health department with Gavin and Emmett.

One of the things that is most difficult about respite,  at least for me is that,  I have time trust the person I’m turning my child over to.  That’s not easy when you’re dealing with a stranger. This is especially true in an industry with such high turnover.  It’s often like a revolving door because people burn out so quickly. 

The only way that I would personally benefit from respite is if I truly trusted the person involved.  If I spend the entire time Gavin is gone,  worrying about his safety,  there’s no break.

Does that make sense?

Kids like Gavin make perfect victims because they will never be able to say what happened to them.  We know that Gavin’s biological father and paternal grandmother sexually abused Gavin but Gavin never said anything and if he was asked about it today,  he wouldn’t know what you were talking about.

Thankfully,  we do have our parents.  Lizze’s parents take at least one of the boys almost every weekend. That helps because we trust them and know they only do what’s in Gavin’s best interest. My parents watch the boys for is whenever we have appointments to go to. One thing that has always bothered me is that I’m the oldest of 6 kids but my siblings aren’t very involved in my kids lives,  which really makes me sad. How great would it be to have 5 more people added to our support system. 

Even still,  we are never without at least one or two our kids.  On the rarest of occasions and I mean like once or twice a year,  maybe,  we’ll have a night to ourselves. Typically,  as soon as the boys are gone, we go to sleep.  We’ve learned to just sorta muscle through it.  Not always the best thing but it is what it is.

Where I live,  there is little in the way of help for children with #Autism,  let alone the parents of children with #Autism. I suppose it’s kinda ironic.  As vocal and involved as I am,  there is still not much in my own home town. That’s probably something I should work on.

Before I stay to far away from the topic I just want to help people understand that,  at least speaking for myself,  as much as I need the break,  I can’t send any of my kids away with a stranger. Since we have three boys on the spectrum,  bringing someone into the house has proven to be much to disruptive in the past. So much so that it really defeated the purpose.

I would love to have respite but it needs to be something that I’m comfortable with. Perhaps I sound petty but all I know is that turning my special needs child over to someone I don’t know very well is much easier said than done.

Permanent link to this article:

Apr 29 2012

Lost and Tired comments on intolerance


One of the things that my wife and I have always tried to do was take the high road.  We felt that it was always better to set an example for our kids. We addressed anything that needed addressed but not in a half-cocked or unproductive way.

However,  having said that,  I’m beginning to rethink my approach.  For those of you that haven’t seen this yet,  I want you to read this letter.  It was originally posted by Phillip Haines over at Autism Speaks. Please be aware that this letter is offensive and you might want to punch something when your done reading it.  Please do so in a safe and conditions constructive manner.



After reading this I was really, really angry. I know this wasn’t written to me about my kids, but that doesn’t matter. The reality is that this letter, in a way, was written to anyone that has a special needs child that can be disruptive at school.

I don’t even know where to begin, as this letter is wrong in so many ways. I was going to pick the letter apart and point out all the ignorance and judgement but you can do that for yourself. I think the more important thing to do is figure out how to best address this type of situation.

What more can we do to better educate people so that this type of disgusting behavior never sees the light of day again?

Is the problem the ignorant cowardly parents that wrote this letter? Is the child referred to in this letter, in the right classroom? These are both good questions. However, as with many things in life, nothing is ever cut and dry.

The only thing I know for sure is that the people that wrote that letter are not special needs parents and thank God for that.

So often we, as the special needs community, face this type of cruelty. Our kids face this kind of cruelty all to often as well. How can we expect our kids to be treated with understanding and respect by their classmates, when their classmates parents are idiots.

I realize that my words aren’t very diplomatic but this kind of ignorance really pisses me off.

It shows how much work we have to do and what we have to fight against.

I understand that a parent could be concerned about the safety of their child if my child is aggressive and violent in the classroom. Having said that, this was not the way to handle it.

I can honestly say that when Gavin was extremely aggressive in the classroom, we approached the school several times about whether we needed to pull him. The last thing in the world we wanted was for someone to get injured.

I hope that this letter is an eye opener for everyone. We need more education and absolutely more compassion and understanding.

If I ever received a letter like this, I don’t know what I would do. I would be very interested to hear how this situation was addressed. My heart goes out to this family. As if life wasn’t challenging enough, now they have to wonder who to trust and who their friends are.

Please, we need to put an end to this type of ignorance. How can we expect the next generation to be understanding and compassionate if they are being raised by parents like this.

If these parents felt that something needed to be done, they should have contacted the school directly and expressed their concerns. Because of that way this was handled, it stinks of intolerance to me. If the parents were that concerned, they should have addressed it with the school. If they did and the school didn’t do anything, than perhaps it isn’t as bad as they are making it out to be.

Let me end with this. I understand that my kids can be disruptive at times. I know that school can be difficult for them and their classmates. However, if you have a concern about my child, sack up and address the issues face to face and in a mature, productive manner. Hiding behind a screen name or an anonymous letter as a means of attacking my family while concealing your identity makes you a spineless coward.

I’m always open to discuss something if it’s presented in a tactful, respectful and compassionate way.

What are your thoughts on this letter? How would you have handled receiving something like this? Please feel free to share in the comments or if you prefer, take it to the Autism Help Forums.

Permanent link to this article:

Mar 27 2012

When the kids take care of the parents


As a special needs parent,  I’m used to being the care taker. However,  today I’m the one being cared for. 

I had a glass of chocolate soy milk and it was almost gone.  Emmett wanted to take care me,  so he took my glass and refilled it for me. 

Although when he brought it back to me,  it was 90% water and 10% soy milk.  Luckily,  he didn’t make me drink it,  but I would have if I had to :-) It would just be one of those things we have to sometimes swallow for our kids.



**Thanks for reading**

       -Lost and Tired

Please join our Community Autism Support Forum Registered & Protected

Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. :-)

Permanent link to this article:

Mar 21 2012

Time to join me and get Fit4Autism


I came up with the idea of “Fit4Autism“ last year. It’s kind of a play on word’s. However, it’s way more then that. As special needs parents we need to be able to take care of our children for as long as possible. The unfortunate truth is that many of us dedicate so much time and energy to our children that we fail to take care of ourselves.

Fit4Autism“ is a challenge I’ve issued to myself and now to you. That challenge is to start doing things to improve your overall health and fitness. Simple things like eating healthier and becoming more physically active. Parking farther away from the store (when possible) or simply walking. As a father to 3 special needs kids (all Autistic) I know how difficult it is to make the time to do this but honestly we can’t afford not to. Who will be their for our kids if we aren’t. We owe it to them as well as ourselves to be as happy and healthy as possible for as long as possible.

If you would like to join “Fit4Autism“ send and email to [email protected]

I’ll get an invite off to you right away. Everything is tracked via My hope is that I get as many people to join as possible. There’s motivation and encouragement in numbers. Endomondo works no matter where you are in the world. The more we have the more attention we can get and the more Autism awareness we can spread. Anyone wanting to support the cause is welcomed to join. We owe our kids healthy parents and this is what I’m doing to make sure my kids have that. Join “Fit4Autism” today and improve your health while increasing Autism Awareness.

My Daily Workout

Related Posts Plugin for WordPress, Blogger...

Permanent link to this article:

Older posts «

Switch to our mobile site