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

Tag Archive: special needs

Jul 23 2013

Have your relationships been affected by #Autism?

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How many of you have had your relationships with others affected by Autism? I know how stressful raising 3 children with Autism is for me and my marriage is not exempt from feeling that strain.

Lizze and I don’t always get along.

In fact, the strain, stress and constant sleep deprivation has taken its toll on our marriage. We love each other and will be celebrating our 10th anniversary in a little over a month, but to say that our marriage hasn’t been impacted would not be true.

We’ve lost touch with friends and family as well.  I would even go so far as to say that some relationships simply were not strong enough to weather the special needs Autism journey. 

Lizze and I both have been unfriended on Facebook by family members and friends alike, because our lives are too depressing.

I don’t personally care about the Facebook thing because to me, that’s petty and I have bigger things to worry about. 

Having said that, it does send a very clear message and certainly goes a long way towards that feeling of isolation that so many of us feel.

This is such an important topic because so many people are affected by this.  So many people feel isolated and alone, even unloved. When you are faced with the challenging task of raising a special needs child, the whole it takes a village thing, takes on new meaning. 

I was hoping that you would be willing to share your experience in this area.  Have your relationships suffered as a result being a special needs parent?

It’s important to also note that this is not by any means the fault of a special needs child. I’m not blaming my kids for anything.  I’m simply creating dialogue about the unfortunate collateral damage.

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

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Visit the My Autism Help Forums

To reach me via email, please Contact Me


Permanent link to this article: http://www.lostandtired.com/2013/07/23/have-your-relationships-been-affected-by-autism/

Jul 13 2013

How do you react to unsolicited advice about your special needs child?

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This happens all the time to special needs parents.  You at a store with your special needs child and they are having a rough day. Out of nowhere, a patron walks up to you and tells you how to discipline your child

How do you react?

In a perfect world, what would you really, really want to say or do to this person?

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

Follow @Lost_and_Tired

Visit the My Autism Help Forums

To reach me via email, please Contact Me


Permanent link to this article: http://www.lostandtired.com/2013/07/13/how-do-you-react-to-unsolicited-advice-about-your-special-needs-child/

Jul 07 2013

Do you ever find Facebook depressing? I sure do..

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Every once in awhile, I find myself really depressed by Facebook. It’s not so much Facebook as it is reading other people’s updates. 

Let me explain…..

It’s not that I’m unhappy with my life because I wouldn’t trade it for anything. However, there are things that I miss or feel like I’m missing out on. 

One of the biggest things lacking in my life, is probably friends. I had lots of friends in both high school and college.  I thought I would take many of these friends with me throughout life. 

I was wrong about that.

Facebook is the only window I have into my old friendships. As many of you probably already know, when you’re a special needs parent, you don’t always have the luxury of friendships.

It’s never a good practice to assume that the grass is greener on the other side.  Having said that, I read the updates that my college and high school friends share and they seem to be doing really well. 

It can be hard for me not to compare my life to theirs. 

I see the nice house in the nice neighborhood and I’m honestly jealous. I also see all the pictures of friends and family, that go on vacation. They all deserve these things because I know how hard they work.

As a special needs parent, I work really hard as well but the payout for my hard work is a whole lot different. My reward is physically surviving the day with all my kids intact. know that is a hugely positive thing.  I just wish my hard work paid off in ways that would actually improve my family’s quality of life. 

I clearly have a slight case of the green eyed monster. Please don’t mistake this for me being ungrateful. I’m eternally grateful for my family as well as what we do have. 

I was just wondering if any of you ever feel the same way, while browsing through Facebook.

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

Follow @Lost_and_Tired

Visit the My Autism Help Forums

To reach me via email, please Contact Me


Permanent link to this article: http://www.lostandtired.com/2013/07/07/do-you-ever-find-facebook-depressing-i-sure-do/

Jul 07 2013

Why I’m so stressed out?

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I thought that since this blog is working once again, I’d get some sharing in while I can… I’m always looking to try and help provide insight and perspective to those in the world that have little or no experience living the life of a special needs parent. 

The truth is that everyone experiences stress in their lives and stress is a very relative phenomenon.

I thought that I would share just a few of the things that have been stressing me out lately.  Maybe you can relate, maybe you can’t.  Either way, you can gain some perspective into my life.

In my life as a special needs parent, I have stressful days and nights. 

Some days and nights are better than others but they are almost always stressful.  To be completely honest, people seem to think that I handle stress really well. I’m always hearing from people that they “don’t know how I do it.”

I feel that I go through periods of time where I cope much better with stress and then there are times I don’t feel I can go on.

At the moment, I’m kinda in between both places.

I have an enormous amount of things on my plate at this point in time.  It’s like I’ve been through the buffet of problems and my eyes were much, much  bigger than my stomach. 

Right now I have a great many things weighing really heavy on me.

Both Lizze and Gavin have health issues that affect everyone in the house.  While Lizze’s aren’t life threatening in any way, she’s living in constant, debilitating pain and currently going through menopause at age 32.

Gavin on the other hand, has very, very serious and life threatening health issues.  He seems to be relatively stable at the moment but that doesn’t matter because the bottom can drop out at any time and without any warning. 

The other problem is Gavin’s mental health.  To put it bluntly, he’s the perfect storm of mental illness.

Gavin’s currently both manic and psychotic.  His mental health is a kin to trying to locate something underneath a body of water when someone has disturbed the mud and sediment at the bottom. The water becomes so murky you can’t see your own hand in front of your face.  It’s impossible to navigate and you have no idea what direction to go in. 

That’s what Gavin’s mental and physical health is like. 
Even the very best experts in these respective fields are at a loss as to what should be done because they’ve not seen a child like Gavin before.  The combination of issues makes him extremely complex and tedious, if not impossible to treat. 

That doesn’t mean we won’t move mountains to try anyway, because we are and he’s absolutely worth it.

This weighs very, very heavy in me and I’m constantly worried about both Lizze and Gavin.  I spend many a sleepless night worrying about what to do or if today will be the days that Gavin crashes.

I worry about the other two boys because they both have their share of challenges in front of them as well. Elliott is extremely anxious and has gotten to the point that it interferes with everyday life. His food allergies and fears of having to use his epipen, make it difficult to even feed him, uses its pizza.

Both boys are sensory nightmares and that only makes things more challenging for both them and us.

Emmett, we thought had outgrown his rare fever disorder, known as PFAPA. However, after an 8 month hiatus, the fever flares have returned with a vengeance.

Perhaps this is just a fluke and a one time thing.

He’s just now recovering from the worst flare of his young life.  This one was so bad that he was in the hospital because we needed to make sure something else wasn’t going on.  It’s horrible and heartbreaking to watch him suffer like that and not be able to help him. 

I’m worried that these flares are back again and that this wasn’t just a fluke. 

Then of course we have the material worries like our natural gas being shut off.  We still haven’t managed to get it turned back on.  This means no hot water or stove.

We are in a house that while we are grateful to have, is in a neighborhood that gone right down the crapper.  We have gun, drug and gang violence spilling into our street.  Isn’t not uncommon to be awoke by the sound of gunshots. From time to time, I can look outside my front window and witness drug deals going down.

It’s not safe enough to even walk the dogs. Recently, a gentleman was walking his dog and was shot in the chest.  It was random and for no reason.  A van pulled up, and just shot this poor guy, while he was walking his dog.

This is a huge, huge worry for me.  I feel like we are trapped here and that the boys will never be able to have childhood where there can play outside and have fun, like kids should. 

The list goes on and on and on.

We can’t forget all the headache that’s going into keeping this site up and running.  The site is growing exponentially and that’s amazing.  However, the downside is that I keep outgrowing the servers I’m on. Every time that happens, the costs double. If I don’t move, than my mission fails and the site goes down. 

Lost and Tired is one of the only things that keeps me sane. I was down for a large part of yesterday and some of today. I think it’s fixed now but I’ve lost a ton of traffic as a result of being offline.

In the grand scheme of things, I suppose this isn’t that important but it’s something really important to me and I love being able to help others. 

Perhaps this doesn’t seem like a lot. Remember when I said that stress is relative?

Anyway, that’s a brief look into what’s got me stressed out at the moment.  Perhaps you can relate.  Maybe you can’t. Either way, I hope this gives you some insight into how the other half lives. 

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

Follow @Lost_and_Tired

Visit the My Autism Help Forums

To reach me via email, please Contact Me


Permanent link to this article: http://www.lostandtired.com/2013/07/07/why-im-so-stressed-out/

Jul 01 2013

Courageous You

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I always like to connect my readers with potential services and em sources. I connected with Takiya and found what she has to offer the community very interesting. I wanted to share this with you all because I thought maybe someone could benefit from this.

Please note that this is not an endorsement (because I have no first hand experience) but instead a sharing of information that may be of benefit to someone.

Courageous You

 

by Takiya Paicely, MSW, LCSW

 

‘Perhaps it takes courage to raise children’ John Steinbeck, East of Eden

 

I want to start by thanking Rob for giving me the opportunity to discuss my mission and services to his readers.  I am honored and privileged by this opportunity.

 

Hi, I am Takiya Paicely.  I am a licensed clinical social worker (LCSW) and maintain an online counseling practice in Indiana.  I provide services to individuals and families.  My mission is to provide quality, exceptional, and convenient services to parents and caregivers of special needs children/adults and offer an alternative for people who may be apprehensive about face to face counseling.  Therapy does not have to be confined to brick and mortar.

 

I have over 10 years experience working in the behavioral and mental health industry.  I have worked with a broad spectrum of individuals from the very young to the more mature.  Throughout my years of working in the behavioral and mental health field, I have observed the many challenges parents of special needs children face.  I have noticed how hard they work to ensure that their children receive all possible services available.  I have seen many parents serve as strong advocates for their children and other families who are in similar situations.  I have been privileged to hear their stories of triumphant, significant challenges, and learning to create and define new ‘normals’ for their lives.  Above all, I have noticed how many of these parents have placed their own emotional, spiritual, and physical health needs on hold to ensure they provide the very best for their children.

 

Oftentimes, there are many services available for children (even if it sometimes requires fighting tooth and nail to obtain).  However, there are limited services that are solely dedicated to serving the parents.  Parents of children with special needs have a unique set of challenges that differ greatly from most parents.  The challenges these parents face on a daily basis can be daunting.  If others could walk one day in their shoes, I doubt many people would be able to last an hour.  While some parents may only have to juggle 3-4 medical appointments a year (annual check up and 2 dental appointments), parents with children with special needs may have 3-4 appointments weekly!  There are medical appointments to specialists, physical, speech, and occupational therapy, ABA therapy, counseling, medication management services, case management, and extracurricular activities.  Whew! That makes me tired just typing that!

 

It takes a brave and courageous person to handle many of the adversities that come about as a parent with a child with special needs.   It requires a little bit of creativity, ingenuity, thick skin, and yes, even luck.   Many of us have the luxury of being able to plan how our day will flow and if something does not go according to plan, we can just roll with the changes.  Not so with a parent of a child with special needs.  It can be the smallest things that can cause tantrum or meltdown, which can lead to some behavioral outbursts at school, in public, or other activities.  Some parents may feel as if they are ‘living on edge,’ because so much hinges on what mood their child will be in.  Then, there is dealing with the judgment from other people.  People who do not understand all that it takes to parent a child with special needs, the sacrifices, the energy, and having to parent differently.  It is unfortunate, that many of these parents have been harassed, belittled, and shamed by those who do not understand.  Many have had to deal with calls to Child Protective Services on more than one occasion.  It is completely unfair, but they continue to hold their heads up high and do the best they can for their children.

 

It is my hope and goal to serve as a resource for parents who desire to talk with a licensed professional to help them work through some of the emotional challenges they face daily.  I am here to shoulder some of the burdens, even if it is for a few moments.  It really helps to have someone to talk to and be able to find ways to manage the chaos that is life.  Many parents are lying awake at night filled with worry, stress, anxiety, and utter exhaustion.  Many are worried if they will be able to handle one more tantrum, one more phone call from the school, one more judging stare, or be able to meet the financial needs of their family.

 

Whether you seek a professional to talk or it is a close friend or support group, please make sure that you take time to heal and edify your emotional, mental, and spiritual well-being.  You DESERVE to live a life being the BEST you!

 

I want to thank you all for taking time out of your busy day to read my post.  I want to again thank Rob for allowing me the opportunity to share my mission.  It is my hope that you all continue to remain strong, brave, and courageous!

 

For more information about online counseling, my services, and my background, please visit my website at www.paicelyconsulting.com.  I can also be reached at [email protected] or (317) 427-5521.

Permanent link to this article: http://www.lostandtired.com/2013/07/01/courageous-you/

Jun 30 2013

Do you care what other people think?

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This is pretty simple to ask and perhaps a bit more difficult to answer. I’m asking you this question as it relates to parenting but more specifically, special needs parenting.

Do you care what other people think?
Personally, I have learned not to wear my heart on my sleeve, so to speak. This is especially true when putting yourself out there, as I have.

Having said that, as a special needs parent, there aren’t a whole lot of absolutes, especially when it comes to parenting kids with Autism, or kids with Autism and very, very serious mental heath issues.

Generally speaking I can take a few punches from people over parenting decisions my wife and I have made. Whatever….right?

However, I tend to become more aware of criticism when it’s over something that is impossibly difficult to manage and we are absolutely doing the best we can.

It’s really easy to sit back and watch our lives through your computer monitor but it’s something entirely different to walk even 10 feet in our shoes. I would imagine that’s true for a lot of you out there. People shouldn’t judge unless they’ve walk a few feet in your shoes.

That stuff really gets to me.

I don’t so much take it to heart or feel like, dang, they’re right, I’m a terrible parent. It just sucks to have someone armchair quarterbacking. Most of the time, I highly doubt that they have any experience and they just like to stir things up.

Even so…. It still gets to me at times…

How about you? Do people’s thoughts and comments about your parenting ever get to you or do you not care what they think?

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉

Follow @Lost_and_Tired

Visit the My Autism Help Forums

To reach me via email, please Contact Me


Permanent link to this article: http://www.lostandtired.com/2013/06/30/do-you-care-what-other-people-think/

Jun 27 2013

Utility Shutoff: Update

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The purpose of this post is to help people better understand some of the struggles that families like mine face on a daily basis. It’s meant to educate and should not be taken as panhandling.

Anyone is welcomed to use the donation button, anytime. However, nothing is ever expected and my only purpose in sharing things like this it to provide insight and perspective. Nothing more and nothing less.

As a special needs family, not only do we face the challenges associated with raising children with special needs but we also have to balance the same things that everyone else does, all at the same time. There’s no slow setting that let’s a catch up or catch our breath. The world doesn’t slow down and so we have to do the best we can in a situation that many people couldn’t even imagine.

Sharing this kind of thing is not always easy and honestly embarrassing. While I know that I’m doing everything possible, at the same time I know it’s not enough. My hope is that by sharing our experience, people can have a better understanding and be less prone to make snap judgements about others in a similar situation.

The sorta good news

So I have some potentially good news. I was finally able to speak with a supervisor at Dominion East Ohio Gas yesterday. They have acknowledged that the situation was their fault because I was given the wrong information a few weeks ago.

Let me catch you up.

We had our natural gas shut off about a month ago and it was off for a few days. Basically this leaves us without a stove or water heater. The furnace is a nonissue at the moment because of the ungodly heat.

It’s no secret that we are struggling and so money, time and energy are scarcities in our household.

I called several times to confirm the amount that would have to be paid in order to get things turned back on and our account in good standing. I was quoted $231 by each person I spoke with. I wanted to hear this from several different representatives because that number was much lower than what I thought it was and sometimes you can get the wrong information from someone. I wanted to be sure that the amount was correct because I couldn’t afford to dump the $231 into the gas bill unless it was going to be enough to turn it back on.

As a special needs family, this was one of those tougher situations because while we need the gas, getting it turned back on would take everything we had at the time and set us back in other areas.

What I didn’t want to happen was for us to pay the $231 and have that end up not being enough to fix everything.

I paid the money because I was convinced that it was an accurate number and I had heard the same exact thing from several representatives. It worked and our gas was turned on and things were good for about two weeks.

Unfortunately, about two weeks ago now, Dominion came back out and shut us off again. This time the bill was over $500 and I was left without natural gas and in a state of confusion.

The guy that shut us off felt so bad because he told us that this wasn’t right.

I spoke to several representatives, all saying the same thing. However, I was unable to speak with a supervisor because none were available and those scheduled to call me back, never did.

We’ve been making do the best we can.

Lizze and I have been doing the cold shower thing and the boys take a bath at their grandparents. Cooking sucks, as does washing dishes but it could be worse and we simply have too much going on to be slowed down by this.

Yesterday, I was able to finally speak with a supervisor. She said that the account is documented, verifying everything that I was saying. Unfortunately, I was miss quoted by everyone that I had spoken to. She said that the misquote is even documented as well.

She apologized and said that we could try and work something out because this wasn’t my fault.

Essentially, she cut the bill down to $261 and reset my account so that we could use a medical certificate to give us time to get back on our feet.

Unfortunately, we have to pay the $261 before the medical certificate will get the gas turned back on. Apparently we only have 21 days from the date of disconnect to get a medical certificate. That means we basically have to have this paid and the certificate approved before July 3rd.

I explained that we don’t have that right now and so she gave me a list of local agencies that might be able to help. The list she gave me contains agencies that I haven’t heard of and so I’m hoping that they will be able to help us move forward. Most of the agencies that I’m aware of, haven’t been able to help because they are tapped out due to high demand.

Hopefully these will be able to help us to move forward.

If they pan out, I’ll be sure to add them to my list of local resources so that any of you that are local can seek help if needed.

This will be a big relief to get this squared away and one less thing to worry about.

For the record, I’m putting this in the win column because before the number was much, much higher. Now it’s looking like there’s a chance we can pull this off. I have a bit more hope than I did prior and anytime I have hope, I consider that a win.

Permanent link to this article: http://www.lostandtired.com/2013/06/27/utility-shutoff-update/

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