Long night
Last night seemed to go on forever. EJ was sick and fussy all night long and ER kept having bad dreams. I think I finally got to sleep around 3am. Lizze let me nap this morning and that helped. I just got ER off to quiet time and I’m going to just chill while everyone is sleeping.
Maybe catch up on some “Splinter Cell: Conviction”….
Thank you for sharing our lives. LT
Elliott Richard: sensory issues?
Elliott Richard is believed to be very high functioning aspergers. We have been paying more attention to some of his behaviors as of late and have noticed some things. ER has NEVER tolerated the tags on his shirts. I have to cut them out (which drives Lizze crazy cause we won’t know what size it is) or he won’t wear the shirt. He says they hurt him. We kinda played it down before but now realize it might just be sensory issue. He also cannot stand water passing over his ears. Again maybe sensory.
As Dr. Patti has stated, most people would never notice any of these things. This kind of stuff shouldn’t effect his life in any real negative way. We do however, know that he is struggling with anxiety right now. He constantly grabs himself like he has to go to the bathroom. As we all know, aspergers kids are very prone to anxiety issues. We are working on some testing forms for him to give us a better picture of where/if he falls on the spectrum. The family history certainly leads us to think it’s a real possibility.
We don’t want him to be autistic or have ADHD. However, we do want him to have the best opportunities in life so if there is something he needs help with we want to know, so we can get that help for him. ADHD is a very real possibility as well. Lizze has ADHD and it’s “extremely” genetic. It’s more likely then not our kids will have it to some degree. We just want to try and stay ahead of the game.
LT
Thank you for sharing our lives. LT
Pins and Needles
We are in the waiting room waiting to get the results of Lizze’s MRI from a few weeks back. We will hopefully find out about the migraines, the tremors and the neuropathy. This has been a really long wait.
LT
How Life Changes After Autism
I want to share and perhaps discuss how life will change after a diagnosis of Autism. When you first hear the word “Autism” it’s like someone sucked all the air out of the room because I couldn’t breathe. It’s in many ways the best and worst day of your life so far. You finally know why your child is “different” but then you finally “KNOW” why your child is different. Best and worst day all in one. You will most likely remember the exact moment you found out. I remember the exact moment for both of my kids.
You will be on a first name basis with words like, spectrum,comorbidity,occupational therapy,speech therapy ect. Plan on becoming an expert in your child’s particular diagnosis because you most likely will. You may very well end up being the only voice your child will have. Be prepared for heartbreak because there will be heartbreak. The world can be a cruel place. You will feel guilt (though needlessly) because you will somehow feel responsible. I have been there, most of us have been there. However, at the same time be ready for joy because you will get excited over every little step forward and there will be steps forward. You will have a new appreciation life that you may not have had before. The little things will mean more then you can imagine.
You will find yourself planning your life out well ahead of time because of wanting to make things as consistent and underwhelming as possible for your sensory sensitive child. You will discover things to do that you never thought of before because you’ll learn what your child can and cannot take. You will miss the things you had planned on doing before the diagnosis but you will discover that those things were just things. You may even find creative ways to do things in a way your child can handle. Those times really make you feel good.
You will find the journey ahead long and difficult. It can and probably will become lonely at times. No matter how lonely you feel the reality is your not alone. One thing you will find out fairly quickly is that there is a very supportive community of parents like yourselves out there ready to share experiences and offer advice or even just listen. We know what you are going through and we are here to help even if the rest of the world seems to be against you. You will embrace your child for who they are. You have become a special needs parent.
I had planned on writing more but right now life won’t allow it.
LT
Emmett John Update
Today we finished all of EJ’s paperwork. He is now qualified as MRDD. I wasn’t expecting that today. That really kinda kicks you right in the gut to hear that. On the positive side that does give us FSS funding to make the house safer and provide for the sensory needs.
Each step we take that gets us closer to the final diagnosis just makes everything all that more real. It’s one thing to know something but it’s another thing to “KNOW” something. If that makes any sense. I don’t think there is any way to actually prepare for the moment of truth that is around the corner. I wouldn’t wish this on anyone.
If you are a parent of typical kids don’t ever take that for granted it can be taken away when you least expect it even if you do everything right.
LT
School days
Well it looks to be a pretty crappy day outside. I leave shortly to get Gavin off to school. I think he actually slept most of the night so that should help him out today. Hopefully he has a good day and it sets the tone for the week. Less then 2 weeks of school left.
LT
Hello Monday, Here I Come!!!
This has been a really long weekend. Gavin has struggled for most of it. We didn’t go anywhere or do anything. Gavin just wasn’t listening at all this weekend. He would go right back to doing what we told him not to within minutes of us telling him. The big thing was running. Gavin for some reason was running a lot in the house. We don’t allow that for obvious reasons (safety). He actually ran into the wall today.
EJ is really getting aggressive. Gavin, Lizze and ER were all victims today. Help Me Grow comes out in the morning to help us finish paper work for EJ’s services. I just want to get him help asap because I don’t know how much more we can take.
Lizze has been feeling pretty rough this weekend but with all the stress who can blame her. We have a pretty busy week ahead. Lizze gets the MRI results. I’m sure everything is fine cause we never heard anything. Typically they call with bad news. But please say a prayer anyways.
LT
End of the day
The end of the day has arrived. I find myself alone on the couch with Maggie, my blackberry and Extreme Makeover Home Edition on Hulu. Lizze went to take EJ to bed and never came back. They are curled up sleeping next to each other. ER and Gavin are both sleeping. At least ER is sleeping, I think Gavin might still be moving around. He is quiet. So he’s probably just playing peacefully on the floor.
Gavin just came down to tell me he can’t sleep. This defiantly points in the direction of manic. We visit this place quite often.
The rest of the day was relatively uneventful. Lizze and I are going to watch the entire series of King of the Hill start to finish over the summer. So we actually watched a few tonight after she woke up.
Sunday has nothing on the agenda for us to do. We need to try to make the house accommodate the special needs of the kids.
LT
Trouble in Paradise
Paradise. More like paradise lost. Today has been very trying so far. Gavin lost it right before lunch. he and ER were playing. Gavin decided to make it into a game “with no rules”. However, there was no way for ER to win because Gavin wouldn’t let him. He frustrated ER with this. Lizze approached Gavin to question him about what happened. ER said Gavin was cheating. Gavin wouldn’t just answer the questions. Lizze asked him again to answer. This time he bit her head off.
I called Gavin over and made him sit like a pretzel on the floor. This keeps him from kicking and jumping around. I asked him the same questions and he just started to scream. Maggie (our dog) went over to check on him and he smashed her in the face with his elbow on purpose. Then he stood up and started stomping so hard he actually knocked the lid of the aquarium. At this point he earned oatmeal for lunch. Which he didn’t like so everything just escalated.
I finally got him to go to his room. He waited for lunch as long as we had to wait for him to stop screaming. He hasn’t had oatmeal in many weeks so I think he was caught off guard. I don’t know if it even has the desired effects anymore but it’s all we really have left to use. It defiantly is a consequence for him and he hates it, so I guess that’s something. We will need to figure other options out because it’s a long summer.
LT
Sacrifices
I knew the day was coming. We shut off the satellite today. We need to dig deeper to cut expenses and that is really all we had left. We are actually pretty excited because we will be saving the money each month now. I have my tower for the computer business hooked up to the big screen so we now just stream netflix and watch our weekly shows on hulu. We just have to wait an extra day to watch.
We have actually been pretty fortunate to have things to either sell or shut down. This usually makes the difference we need it to. I the many years I have worked for Microsoft I have received many things from them. I have received free tablet pc’s, free copies of just about every software they release. It’s like having liquid assets when needed. I can sell that stuff on ebay and make enough to get by when things are bad.
Even Lizze does testing for some major companies like Dell and HP. She gets free stuff all the time. So this really has been a saving grace for us in the past.
All in all it’s somehow always worked out.
Getting rid of TV was always a last resort because we needed our sanity but it was next in line on the chopping block.
We had already dumped the Xbox 360 and PS3 a while back. There are always ways to make it by if you really have to. We are however, at the end of that buffer. But it looks like business on the constructions side will be good to us this summer. And I always seem to get a computer in for repair when we really need it.
LT
I Wish
I wish we could sleep through just one night.
I wish I knew how to better help my family.
I wish I had friends to get together with every weekend.
I wish I could just take the kids to the play ground.
I wish my wife and I had date night.
I wish my house was safer for the kids.
I wish we had more money.
I wish I wasn’t in pain every day.
I wish I could see a future.
I wish we could get the minivan we so desperately need.
I wish I had the luxury of drinking sometimes.
I wish Emmett John would go to sleep.
I wish my family understood how bad things are.
I wish people wouldn’t try to show us the silver lining.
I wish Emmett John could talk.
I wish Elliott Richard had friends.
I wish Gavin would stabilize.
I wish I was a better husband and father.
I wish I had more to give.
I wish I had the luxury of many other peoples problems.
LT
Coping: Autism’s Stress
One of the big things I struggle with daily is stress. I’m under so much stress each day that words cannot express the crushing weight I feel. My wife has fibromyalgia which was triggered and worsened by stress. Her quality of life is nonexistent.
We never have a chance to just get away for a bit. We even have to take turns sleeping sometimes. We are not managing this stress very well. But to be honest this is not the typical stress most people feel each day. Nothing will ever be resolved. The kids will always be autistic and have special needs.
So it’s not like things will get better or there’s a light at the end of the tunnel. That doesn’t apply to special needs parents.
I enjoy fixing computers. I find it very relaxing. One of the reasons I started my business was to get paid for something I enjoy. Kind of a “kill two birds with one stone” thing. Lizze loves writing and finds that relaxing. You need to have some way to unwind. The problem is literally finding the time. Special needs kids take up every ounce of your time and energy.
I’m going to try to come up with ways of decompressing and share them here weekly. I also started sharing so of the music we use to help sooth our kids at night. Maybe they will work for you maybe not. But you’ve got to start some where.
This is so important to understand,acknowledge and discuss because this type of stress destroy’s your body from the inside out. Who will be there for our kids if we can’t?
LT
Crumbling under the weight: Autism/Bipolar
Lizze and I are crumbling under the weight of everything. Emmett John (EJ) is becoming extremely difficult to manage. He screams and breaks things almost constantly it seems. He targets Elliott Richard (ER) and Lizze and physically assaults them. ER has scratches on his face and back and bumps on his head, all from EJ. Lizze’s face is all scratched up from EJ clawing her for seemingly no reason at all.
EJ is angry much of the time. At least it feels that way. There is no way to know for sure what he is feeling because he still doesn’t talk. He will walk through the living room and throw or smash literally anything he can get his hands on. I think it’s pretty obvious he’s frustrated with life. We are trying everything we can to make things easier for him. We still have a ways to go before any real help kicks in.
I’m going to make some sight cards today and see if that helps in the communication area. We will still keep using the words as always but also point at the same time and maybe that will be easier. At this point I’ll take anything that will help.
Lizze is getting worse. Her migraines are worse and body pain is worse. I can hear her joints “pop” from across the room. It’s truly a horrible sound and I can’t imagine it feels any better then it sounds. She is so stressed out and I can’t seem to find a way to help her.
Gavin is continuing to regress. He had a horrible day at school yesterday. He told his teachers he was afraid we wouldn’t love him anymore. That was bullshit and a complete manipulation of the teachers. We don’t punish him for what happens at school cause he already met with the consequences during the day. We do however, insist on discussing what happened so we can learn how to better manage things in the future. Getting information from him is like pulling teeth. He doesn’t “remember” what happened. He doesn’t “remember” being sent to the office two times yesterday.
We are very clear that he’s not getting in trouble but we want to hear from him what happened. We want his perspective or insight. This inevitably leads to a meltdown and him having to go to his room for everyone’s safety. I’m not sure there is even a point anymore. The only thing he will talk about (to no end) is what the lunch menu at school is. He is obsessed with food.
ER doesn’t listen anymore. Honestly, I can’t imagine why. None of his other brother listen why should he. He is getting lost in the shuffle and I don’t know how to fix that. We need preschool to start. For that to happen they need to have an opening and they don’t.
No one gets just how bad things are and how badly we need help.
LT
Autism and Potential
All parents want the best for their kids. When it comes to special needs kids that can be a very different and very difficult pill to swallow. In my life I have 2 specials needs autistic kids. For this topic I want to discuss Gavin as Emmett John is to young and there isn’t enough known about his condition to make any guesses.
We want Gavin to have the best possible life (this is why we have to push so hard). Every parent wants to go to sports events and graduations. They want grandkids and to see their child find happiness. I our case with Gavin we will most likely never see any of those things with him. However, we do want him to live up to his potential. He should still be the best he can be, despite the autism. We don’t want him to be someone or something he’s not.
This is where reality likes to slap us square in the face. How do we know what his potential is. How do we know if we are pushing to hard or not hard enough. Gavin is a very capable little boy at times. Gavin deals with regression quite frequently. In fact we are in one of those phases currently. Typically he bounces back but sometimes he needs to re-learn some things he has “forgotten” how to do.
Gavin is extremely intelligent but also extremely socially challenged. His behavioural problems get in the way of most activities. We push pretty hard on certain things because we don’t want him going to jail over some of these things when he gets older.
Back to my main question. How do we know what his potential is? Should we just recognise his limitations and never challenge his to overcome them? Things would be a lot quieter around here if we did. I can’t tell you how many times Gavin says he can’t do it but then we push him to at least try he finds he can do it.
We want to embrace him for who he is not who we want him to be, if that makes any sense.
LT
Some news on Emmett John
Today has been a really rough. We got Emmett John to see his pediatrician today to follow up. Turns out the hospital missed quite a bit. This is what we learned.
His nose is broken but doesn’t require surgery at this point. The biggest thing was the bruising behind his ears. I heard that and got sick to my stomach. That is a sign of intracranial bleeding. He said he is concerned about major internal head injury. Dr. H said on a scale of 1-10 he is worried at about a 6. Emmett John is doing fine after 24 hours so most likely all will be fine. We have to watch him closely over the next few days. If we notice anything at all he goes straight to the ER.
Gavin had a perfect day at school but struggled at home. Elliott Richard is fairly traumatized after watching his baby brother fall down the steps. He was so brave. After it happened he calmly came upstairs and told me that Emmett John fell down the steps and needed my help. Elliott Richard was ok till I told him that I was taking Emmett John to the hospital. He began sobbing hysterically. He was so scared for Emmett John. He is my sweet little angel. We must be doing something right because Elliott Richard is turning out pretty good.
Lizze and I are both still sick but still alive. Lizze has really been struggling with her pain the past few days.
I wish she could catch a break.
I have been better but also worse. I just wish I was in a better physical condition (mainly my back). I would be able to do more then whàt I can do now.
LT
A parent of autism
I’ve been a parent to an autistic child for about 9 years. I’ve been through it all before so I should know what to expect but I don’t.
For some reason it feels like the first time again. All the uncertainty, fear and feelings of guilt have all come back. I wonder what I did wrong. I ask myself what I should have done differently.
I have also begun bargaining with God. Later the anger with God will kick in for what is happening to Emmett John. The fear of whether or not it is regressive like Gavin’s is smacking me in the face.
LT
Our autism and vaccine journey..
My wife and I have never put any stock in the whole vaccine debate. I have to admit that I just trusted our doctors and never really researched the whole debate. That changed when we were advised by our sons psychiatrist to re-evaluate our stance for Emmett John.
Read my post here: http://wp.me/pQI30-3a
Anyway, we have been researching a ton lately and have begun seeing the vaccine and autism debate for what it is. Does anyone even know how the debate got started? If not you should Google the name “”Dr. Andrew Wakefield”.
The whole debate was started over a now completely discredited research (and I use the term loosely) study. It was based on false information that was apparently “unethically” obtained. This guy is currently under review to have his medical license revoke as well.
Having educated myself over the past few weeks I’m left to wonder why so many parents are blindly aligning themselves with one side or the other? In my opinion (and it’s only my opinion) if the source of the entire debate has been proven to be false why is there still a debate?
I really learned a lot since this issue has arose for us. As I’m new to blogging and to the whole debate, I apologize if this has been over discussed. I just thought I would share some of what I have learned..
LT
A great article on Vaccines and Autism
I found this article today while doing some research. I thought it was a good read. I’m not sure who wrote it.
The article can be found here: (or read below)
http://articles.sfgate.com/2010-02-07/opinion/17848204_1_andrew-wakefield-vaccines-autism
A reality check on autism and vaccines
February 07, 2010
Many worried and angry parents of an autistic child believe that vaccines may cause the disease. But it’s pure myth – disproved by numerous studies and now a final slap from a British journal disowning a report that started the dangerous nonsense.
Will these parents accept reality – and allow their children to receive shots against a dozen or more illnesses? And will fringe groups that play to fears of autism give up their indefensible claims?
The answers can’t come soon enough for public health experts. Vaccination rates, while generally high, have shown dips partly because parents are citing the notion of vaccine dangers in skipping shots for their children.
Smallpox and polio have been virtually eradicated thanks to vaccines. But whooping cough, pertussis and measles – all but stamped out years ago – can reappear via unvaccinated patients.
A law that allows parents to opt out of school-required shots has raised the worry level. This so-called exemption rate statewide is 2 percent, but it was 6.3 percent in Marin County and 5.8 percent in Sonoma County in 2008, according to the state Department of Health Services. Vaccine “denialism” has become a public health issue.
In the case of autism, a sketchy study by British physician Andrew Wakefield in 1998 set the vaccine blame game in motion. He claimed that a combined measles, mumps and rubella inoculation given to infants was linked to the disease, and his findings were published by a prominent British medical journal the Lancet.
But follow-up research by other teams failed to match his results. In recent years, his study fell apart amid charges of dishonesty, violations of research ethics and a “callous disregard” for the 12 children involved in the research. The Lancet disavowal this past week capped the collapse. How does he feel about the wholesale discrediting of his work? The findings are “unfounded and unjust,” he said.
The damage will be hard to undo. Autism, a range of conditions that disrupts communication skills and social interaction, has grown in reported numbers as parents and doctors learned to recognize its symptoms. Nearly 1 in 100 American children is diagnosed with autism or a related condition.
Without any effective treatment – or even a clear understanding of the causes of the disease – parents are primed to be impatient with slow research results and look for villains.
The Wakefield study provided an easy and dramatic message: Shots cause autism. Avoid vaccines and save your child from the troubling condition. It’s a scientific fact confirmed by a doctor. His findings expanded on other, equally ungrounded fears about other contaminants in vaccines.
But it was pure quackery. Public health experts fought the message but were savaged by anti-vaccine forces as flunkies of drug companies. Fringe medical figures had a field day, stoking the fears of worried parents desperate for an answer. Hollywood celebrity Jenny McCarthy, the mother of an autistic child, pushed the claims on talk shows and through a foundation she founded. This past week she continued to defend the discredited vaccine study.
The rejection of Wakefield’s published work is way overdue. Also overdue are similar rejections from anti-vaccine groups and leaders like McCarthy who are deluding desperate parents with autistic children and leading others to disregard vaccines. Too much money and time has gone into countering these ill-founded claims instead being directed toward research and reliable treatments for autism.
Disposing of a flawed theory on autism is one issue. But there’s another that may be harder to end: a disregard for science. That may be the ultimate casualty of a misguided hunt for an answer to autism.
How do we cope?
How to parents of autistic children cope with life? Speaking for myself, I don’t know. I know I’m depressed and tired all the time. Recently I have been getting sick after eating. The stress is killing me. How are we as parents supposed to cope with this level of chronic stress? There is little to no help out there. For the amount of kids that are autistic you would think that there would be more support centers. At least in my area there isn’t even a support group for parents of autistic children. We get lumped in with support groups for other disorders.
Respite care? What’s that? Aside from my parents we get nothing. There needs to be support for the parents because we are all on the front lines. Lizze and I have become like shut in’s because we rarely ever go anywhere. We can’t even let the kids play outside because the kids in my neighborhood make fun of Gavin. The parents of these kids are even worse and use words like “retard” when referring to Gavin. It takes everything I have not to react to these things.
As parents to these special needs kids we need support and understanding not judgement and ridicule. A little compassion never hurts either. I have read about movie theater’s that have a night just for autistic kids and their families. They show movies that are hand picked to be the least stimulating as possible. These are things that can help parents cope and make them feel a bit more normal. I wish there were more places out there that did things like these.
What are the stats now 1/110 kids are autistic? Why don’t we see more being done on a local level. In my town which believe is on the map has nothing. We have to go through MRDD and that’s if there is even funding available. We have done everything on our own with the big exception of his school. We are lucky in that area because we have a school just for autistic and adhd kids about 5 mins from my house. But there are so many kids that don’t have this opportunity because there are no special schools.
I guess I just needed to vent a bit. I wish I could put into words what our lives are like. I mean do it in a way that people will just understand. As parents of these special needs kids our plates are already full. We need things to make life easier not more difficult.
LT
Sensory Issues
It’s pretty hot out (82F) right now. Gavin through a fit because we made him turn his ceiling fan on. He won’t sleep with the windows open either. He sleeps in a sweatshirt, sweat pants and sock all while under his comforter and buried under his stuffed animals. He says he’s not to hot but we are afraid he’s going to over heat. We don’t have central either. Does anyone else have this issue?
LT
The topic of vaccines has come up….
Vaccine, it seems to be like the grand canyon of the autism community. You find yourself on one side or the other and there is no middle ground. I will start by saying that I don’t subscribe to the vaccine theory nor does my wife for that matter. The reason I bring this up is because Gavin’s psychiatrist has suggested we consider withholding Emmett John’s MMR vaccine. Now before you grab your torch and pitch fork hear me out. He is one of the best in his field. We are very lucky to have him here.
What he said was that vaccines as a whole are absolutely a good thing. There is no research to show otherwise. Majority of kids handle vaccines without any problems (which is why you should have your kids vaccinated). He said that there is a subset of children that don’t handle the vaccines well. He has had patients that where high functioning autism, received an MMR vaccine, ran a high fever and then became non verbal. He said there is no proof one way or the other with these cases. Again he is not saying don’t vaccinate your kids but in Emmett John’s case for example there is a family history and pending diagnosis of autism. Also Elliott Richard was admitted to the hospital after his MMR. He said that we should weigh the risks and benefits of further vaccinating Emmett John and have a serious discussion with his pediatrician. That’s all.
I had never put any weight into this theory before but having someone like him say this (even if it’s for a different reason) to us makes you stand up and listen. Again he is not preaching don’t vaccinate your kids. I want to be very clear about that. In fact his kids are all vaccinated. He is saying that there is a subset of kids that are much more vulnerable for some reason maybe genetic defects that make them predisposed. Knowing that Emmett John is a high risk child and there is a family history of autism the vaccines (in combination with a potential genetic defect) may be enough to push him over the edge or flip the switch.
Does any of this make sense? I honestly never thought I would ever give this consideration. But faced with the choice what are you supposed to do? We completely trust our doctor. He is a big reason Gavin is doing as well as he is. He is simply sharing his personal experience. He recommended we talk to our pediatrician and decide what we want to do. As it stands anyway, our pediatrician wanted to hold off on the MMR until we figured out what was going on with Emmett John anyway because he didn’t want the vaccine to complicate things. Elliott Richard had a reaction when he was little. So there is a history.
How do you even begin to make that decision? You vaccinate most likely he handles it ok. On the other hand you could vaccinate and make things worse. How could we ever forgive ourselves? I wish I could look at Gavin’s psychiatrist and say “well he must be a quack” but I can’t. Again we aren’t talking about someone who is anti-vaccine because he isn’t. As a medical doctor he believes in them. We are talking about someone who has seen cases where this has happened. He said there is no proof but it’s hard to deny the connection.
We have time to decide right now but since yesterday all these things have been swirling around in my head. These are really BIG decisions to make in already bad situation.
I know the vaccine topic is touchy and I am not looking to start a heated debate but this is what we are faced with. My wife and I are pro-vaccine but in light of the information given to us we are at a loss as what to do.
LT
Lost and Tired 