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

Tag Archive: several times

Nov 16 2011

Have I mentioned I Hate our van?

So my father, graciously have up his evening in order to help me with the van. 

It was already dark when we got out to where the van had died.  She started right up and then began this horrible grinding and screeching sound. 

It appears that the water pump has seized up and seems to at least be part of the problem.  I had have it towed yet again.  The towing company has towed the POS van several times now.  I should be earning some kind of frequent flyer points by now. 

The shop will hopefully get the van in first thing in the morning and if it’s just a water pump,  it should be a quick fix.  Quick maybe but certainly not painless.

I really truly believe this van just wants to die and be left alone. We keep bringing it back to life but the end result seem inevitable anymore. 

I want to thank my dad for giving up his evening to help me out with this.  I want to thank my mother for rescuing Lizze and Emmett when they were stranded and Lizze’s mom for taking the boys to school in the morning. 

I wouldn’t have been able to pull off today without you. :-)

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- Lost and Tired

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Permanent link to this article: http://lostandtired.com/2011/11/16/have-i-mentioned-i-hate-our-van/

Nov 15 2011

Dammit all to hell

Pardon my french but that’s all I can think to say.  Actually,  it was more like the cleanest thing I could think of at the moment to say.

Lizze took Emmett to therapy this afternoon and then ran to the store.  The freakin’ van started shaking,  well the engine rather.  It stalled out several times but she managed to get it into a parking lot before it completely died. 

As she was pulling into the parking lot,  smoke began to come from underneath the hood. 

I hate the bloody van.  It has been nothing but trouble.  We have had it for just about a year and it has been in the shop about 12 times already.  Brand new transmission,  deep engine work has been down several times now,  new sub frame,  new fuel pump,  electrical work,  more vacuum leaks than I can count and every time it get fixed,  something else breaks.  Oh..yeah,  I forgot to mention the ABS braking system. 

The body is in great shape and it met our needs,  so that’s why we put the money into it over the past year,  I believe almost $5, 000 in total.  Aside from this new issue,  the driver side window doesn’t go down, the power sliding doors are broke and they actually won’t even unlock all the time. 

I have gone in with a pair of pliers, in order to try to unlock the doors and have had no luck.  Then to my frustration,  they will simply unlock all by themselves.  When they do unlock by themselves I get so frustrated because I couldn’t manually unlock them.  I’ll look at whoever is in the van at the time and say “I loosened it first”. 

I have to find humor in even the most frustrating of times or else I’ll completely lose my mind. 

My mom is going to pick up Lizze,  Emmett and eventually Gavin,  and bring them home.  My dad canceled his plans tonight so him and I can go look at it and see whether or not it needs towed. 

Either way,  it’s back to the shop once again…  Sigh

I’m very grateful that our families are willing to drop what they are doing and rescue us in our time of need.  Thanks everyone…

- Lost and Tired

Posted by WordPress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. So please forgive the spelling ;-)

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Permanent link to this article: http://lostandtired.com/2011/11/15/dammit-all-to-hell/

Oct 01 2011

The repetition is driving me crazy

Alright,  I have to be real honest here.  Gavin in is driving me insane. I have no idea what’s going on with him anymore.  It could be outside of his control, in which case I feel even more guilty for not having more patience.

The problem is that he’s not listening….or at least not remembering.

Several times now,  today alone, I have had to stop him from telling stories to Elliott.  I can’t trust that they are going to be appropriate,  as typically they aren’t. See last night’s post about nightmares.

How many times must I repeat myself to him? 

I don’t know if it’s teenage issues in general or if he honestly doesn’t remember the 6 conversations we have had about this in the past 24 hours.  He reacts as though he knows he was wrong but seems as though it’s the first time this has happened..  If that even makes sense.

What I do know is that hearing him say “I’m sorry”,  is like nails on a chalk board for me right now.
It’s not that I’m unforgiving or don’t appreciate his apologies,  because I am and I do.  It’s just that it’s constantly relentless and 5 minutes later he will repeat the behavior or decision he was apologizing for in the first place. It’s an endless cycle.

We have the exact same conversation,  over and over and over again, throughout the course of the day. 

I could honestly, and don’t think I haven’t thought of it,  prerecord my responses and just touch a button on my phone to respond to him. 

Anyone out there that is thinking something like,  man you need more patience,  is right. However,either you have never had to deal with this repetitive type behavior or you’re simply a better, much stronger person than me.

Repetitive type things,  while largely benign,  can erode the patience away from even the strongest among us.

I wish we could at least spice up the conversation a bit.  Just switch gears every once in awhile. Maybe have an exchange in Spanish or something.

It really does ware on you and takes its toll.  I’m only human and as such,  can only take so much.

I have found that sharing my frustrations,  helps me to better cope with the stress and maybe help someone else to realize that they are not alone.

Please feel free to leave your experiences in the comments..  Would love to hear what you have to say ;-)

- Lost and Tired

Posted by WordPress for Android via Samsungs Epic Touch 4G (provided to me at no charge by Sprint) without the use of proper editing tools and disadvantages of a bastardized version of auto-correct. So please forgive the spelling ;-)

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Permanent link to this article: http://lostandtired.com/2011/10/01/the-repetition-is-driving-me-crazy/

Aug 21 2011

When Autism Awareness truly fails….

When Autism Awareness Truly Fails….

I have been wanting to write this post for a few days but haven’t had the energy. However, despite my lack of energy, I feel it’s very important to write this because what has happened to my family and Elliott in particular, really does affect more then just us. In fact, I think this has effects all of us within the Autism and special needs community.

As I have previously shared, Elliott was barred from transitioning from pre-school to kindergarten at the school he attended last year. You can read some of the back story in When Schools Discriminate. Since that post was written, the school has once again denied Elliott access not because of any issues or behavioral problems. Instead he is being barred simply because he carries with him the label of Aspergers.

How has Autism Awareness Failed?

I have been very vocal about how and why I think Autism Awareness is broken and what we can do to fix it.. Basically, the administration of the school has erroneously lumped all kids with Autism into one group. Not only to I feel this is wrong but it’s also unfair, it stereotypes and it’s grossly inaccurate.

Believe it or not, I do understand where they are coming from. However, they are dead wrong in the way they approach this issue.  The school is not currently set up to handle kids with more profound developmental delays and I understand that. However, just because a child is on the spectrum doesn’t automatically mean they are going to be a problem. One of the things I was told by the person who made the final decision not to allow Elliott to continue attending was that he was trying to rebuild the school’s reputation and so we are selecting kids we know we can teach. Again, I understand what they are trying to do, however, I don’t agree with this blanket approach at all.

I explained the concept of a spectrum disorder several times and in as many different ways as possible to help bring better understanding to the decision making process they have employed but to no avail. I explained that Elliott does not need an IEP or any form of special treatment. I also explained that simply because a child is on the Autism Spectrum does not mean they are the same as another child on the Autism Spectrum… In fact, every child is different and in some cases like Elliott, he is more enhanced then hindered. Elliott has the advanced vocabulary and intelligence but none of the social awkwardness that often times accompanies this disorder.

However, all the school cares about is the word Autism. I was told that if Elliott hadn’t been diagnosed with Aspergers he would be welcome to attend. My response to that was, Elliott would still be the exact same person with or without the Aspergers diagnosis. Elliott should not be judged solely on the basis of a single word but instead on who he actually is and how well he had actually done the previous year.

It’s also important to note that the school knew about Elliott’s diagnosis when he entered preschool last year and had no problem then. Elliott did extremely well last year and had no problems at all. In fact I was told be his teachers on several occasions that they don’t agree with this diagnosis and that they just simply love Elliott.

So what now?

Part of the reason I’m so upset about this, besides the obvious appearance of discrimination, is the way they went about doing this. We met back on July 8th to discuss Elliott’s future and respond to the first letter we received telling us that Elliott would not be allowed to return. I thought I had educated the educators about how profoundly dynamic Autism is and how each and every single child is different. Apparently that fell on deaf ears. I was told that they were going to look at Elliott again and also meet with Dr. Pattie (Elliott’s psychologist), who incidentally is an independent educational evaluator.  Dr. Pattie said Elliott would have absolutely no problems at this school and that he would probably one of the best students there.

However, they never met with Dr. Pattie and Elliott was never given a fair chance. I firmly believe we would never have even heard back from them if we hadn’t kept trying to follow up. We received an email in reply to our request for information about a week and a half before school was suppose to start. I don’t think they were ever going to reconsider Elliott and it was all lip service meant to placate us.

After the email we received at the last minute, informing us that Elliott would not be allowed to return we spoke with the principle at Gavin’s school. Elliott has been enrolled in Summit Academy for kindergarten this year. This is a great school and I know Elliott will do great. They reason it wasn’t considered in the first place was because it’s a private charter school for kids on the spectrum and kids will ADHD.  Elliott simply didn’t need any of the benefits that this school provides it’s students. Please don’t take this as me having any issue with Summit Academy because I don’t. I love this school and they have been such a godsend to Gavin.

With only a week to find a new school and our local school system being a complete disaster this was our best option, at least for kindergarten. There is still chance that Elliott has ADHD so maybe this is for the best. He’s also dealing with some OCD right now. He is washing his hands constantly and is very preoccupied with germs. Summit Academy will be great at working with Elliott to overcome this. While I still believe it’s best for Elliott to be mainstreamed, I have the utmost confidence in Summit Academy.  Besides it’s only kindergarten and this will give  us a year to figure something else out if we need to.

To the educators of our children.

I just want to say that not all schools practice this type of stereotypical discrimination. Many school out there like Summit Academy for example, are absolutely amazing. We also cannot expect every school to be equipped to handle every special needs child as that would be unrealistic. However, kids should be evaluated on an individual basis.

There will always be ignorance in the world and that includes in the educational systems as well. This is why we need effective Autism Awareness. Schools should not be allowed to hand pick students in order to protect their reputation or test scores. They certainly shouldn’t be allowed to take a blanket approach to denying access to their school based solely on a diagnosis without first evaluating the actual child. Autism is different for every single child and adult. While this particular situation affected Elliott it really affects all of us.

This situation shows just how much ignorance and misunderstanding it still out there. We cannot allow this type of thing to happen and that’s why I wanted to share our story. I have not decided whether or not to release the name of the school yet. Part of me feels I should take the higher road but part of me thinks they should have the spotlight shone on their admittance policies…

Please evaluate the child and not the diagnosis. Everyone is different and lumping everyone together is archaic, ignorant and inaccurate.

Permanent link to this article: http://lostandtired.com/2011/08/21/when-autism-awareness-truly-fails/

Jul 10 2011

Step into the shoes of a special needs parent

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.

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Permanent link to this article: http://lostandtired.com/2011/07/10/step-into-the-shoes-of-a-special-needs-parent/

Jul 02 2011

Autism, Aspergers and Puberty…..Oh My

So I have to say that one of the scariest things about raising a child with Autism is when they hit puberty. Everything changes……everything changes. In my experience with Gavin, have seen his reactions to medications change as his hormones begin to take flight. The meltdowns…yeah. they are WAY worse now but far less frequent. He’s just stronger now and does’t know his own strength. Gavin is also starting to grow a mustache and is getting some arm pit hair as well. He pretty proud of it, so I thought it worth mentioning. One of the “problems” we are seeing is with his coordination. I mean, he drops everything, literally. He falls both up AND down the steps. Today alone, he dropped his water bottle several times. He also dropped a few bowls (cereal not the other kind…really?) and glasses as well…oh and he fell out of his chair and knocked a table over.

I’m thinking this has something to do with puberty and growing……right? Please tell me it’s just a phase because we are running out of dishes. I’m having to remind him to SLOOOOOW down. He’s WAY more likely to trip and fall when he’s not paying attention to what he’s doing or when he’s doing it to fast. It’s frustrating for him and so we just try to remind him without making him feel bad. Please God let this be a phase and there is a light at the end of this tunnel. Oh and PLEASE, PLEASE, PLEASE don’t let the light at the end of the tunnel be a train.

On the positive side, yes there is a positive side, we have finally found a group of medications that “seem” to be working well…or as well as can be expected. Gavin has actually settled down quite a bit. While the meltdowns we experience are MUCH more severe, they are far less frequent. I can ABSOLUTELY live with that. Gavin is MUCH stronger then he used to be so when we have to physically intervene during a meltdown, we kinda roll the dice as to whether or not we will be collateral damage. Luckily, Gavin doesn’t lash out at people anymore. Despite our recent challenges, he has honestly settled down a lot since puberty. My understanding is that it either goes one way or the other when they hit this phase of life. Dare I say it? Perhaps we are lucky? Knock on wood….

Have any of you experienced your Autistic child hitting puberty and lived to tell about it?

Permanent link to this article: http://lostandtired.com/2011/07/02/autism-aspergers-and-puberty-oh-my/

Jun 24 2011

Gavin continues to escalate…..

We had a problem tonight with Gavin. Elliott got hurt again tonight as a direct result of Gavin’s actions. Whether he meant to hurt Elliott or not (and I don’t know that he did) there are consequences for his actions. As usual I recorded it as a means of simply documenting what actually happened should this ever be called into question. I took a more hard line approach with this one today because I have just had it with this behavior. No part of me believes anymore that he CAN’T control this. In my opinion this whole thing was a willful act that he could have stopped at any point but simply didn’t. This meltdown is because he was told he was going to have oatmeal instead of a chicken patty for dinner not because Elliott was hurt. I want to stress that the “oatmeal” itself has NOTHING to do with this. It’s the fact that he is being held accountable for his actions, pure and simple.

I take a more “fed up and aggressive” approach to this meltdown. The level of self-injury is the worst we have seen so far. I want to point something out as well,  when Gavin started to meltdown we tried to get him upstairs but it was to late. I remind him several times that he has the right to scream but our rule is that it must be done into his pillow, this helps to mitigate the impact it has on the other boys. I don’t think this is unreasonable. He choose to throw his fit in the kitchen so I told him that since he choose to do this downstairs instead of upstairs like he’s supposed to he gave up his right to scream. Whether or not that’s the right things to say, I don’t know but it didn’t work anyway. I also let him know that I’m not going to stop him from hitting himself and that he will NOT be going to Akron Children’s Hospital as a result of this. I tried to encourage him to breathe and get himself under control. He was screaming so loud that I was surprised no one called the police. I told him that if someone calls the police and they show up it won’t go well for him. At one point I actually got kicked, although I don’t think it was on purpose.

Look, I’m not perfect, in fact I’m far from it. I say and do the wrong things but I will say that most of the time I’m feeling my way through the dark. With Gavin at this point, I’m at the end of my rope. Earlier today he “lost” another tooth. I don’t know what we are supposed to do and NO ONE has any answers. All I can say is that I do the very best I can with what I have left to give. I’m trying a different approach in this video and I’m sure I come off and uncaring but I assure you that’s not the case. I’m trying every approach I can think of to help these situations and the end result is the same every, single time. Gavin meltsdown and Gavin self-injures. The only way to avoid these meltdowns is to NOT hold him accountable. As tempting as that is, we can’t do that.

Also I’m not sure what went wrong with this video but the color is way off and it’s like it was shot in the dark but it wasn’t. Literally, it hard to watch but I think you will get the point.  I hope our experience can be beneficial to someone else out there.

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Permanent link to this article: http://lostandtired.com/2011/06/24/gavin-continues-to-escalate/

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