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I am hoping someday you will decide to come back if for nothing else than for yourself and how your writing has likely helped you when you needed to vent or go someplace rather safe.
I will miss you, Lizzie and the boys. May you all find your way in this life. No matter how you arrive there, there really isnt a right or wrong.
Prrayers to you and peace.
2 days, 19 hours ago on This will be my final post on Lost and Tired
I am hoping one day your family will come back together. Prayers your way and expecially for your children.
4 days, 18 hours ago on I have heartbreaking news to share
Hoping the meds start doing a bit better job. Movement disorders can be awfully frustratiing especially for Gavin trying to adjust to it. Perhaps for that, there are a few more meeds they can try. The bad part about the meds is they tend to be sedating :/
Thinking of you all and glad to see you posting.
1 week, 4 days ago on Heartbreak and Potential Progress
I hope things get a bit better. Getting offline by 9pm is actually a very good idea for you. Besdies some family time it will give you time to unwind and relax.
This blog of yours does allow you time to vent though, and express concerns- and that isnt a bad thing in and of itsellf. I am sure you're isolated by some of the circumstances of your life, and some things that just cant be changed.
I hope Lizzie starts feeling better and gets something to make her feel better and start functioning normally. With you both working together things will improve. Stand united as you always have.
Gavin is a teen.... I hate to break this to you, but teens are horrible creatures on their best days and even worse when it isnt a good day. For Gavin, this time would be very confusing, all you can do is help him through it as much as you can.
2 weeks, 1 day ago on I’m really struggling right now
Lots of meds have the potential side effects of involuntary muscle movements.... even those to control tremors. Is he on any meds that have those side effects listed, and if so, can the meds be changed for some that dont? And yes, if someone is kept on the meds they can become a permanent thing. So if he is on one, you and the Dr would have to weigh the benefit of him being on it and have a movement disorder(even temporary) or being off the med. Hoping you can come to a happy medium.
2 weeks, 1 day ago on More bad news about Gavin tonight
I would sit and lay om it and keep warm and cozzy on it all winter long. This beanbag looks so inviting. My nephew would love it too.
2 weeks, 3 days ago on Giveaway and Review of the ENORMOUS Yogibo Max Beanbag Chair ($229.00 Value)
Does Gavin have any other social outlets than just you two during the day? Seriously, although he has his problems it may be he is just bored to pieces and he is a teen. Some kids will naturally talk your head off and maybe he is one of them. I would rather have a talker though than some sullen teen around!
In all honesty, even though what he is saying isnt normal, be glad he is talking to you rather than sitting and moping and in general being a pain in the hind end as so many teens do.
2 weeks, 3 days ago on It’s heartbreaking and emotionally gut wrenching
Thats great Gavin it looks just like the picture!
2 weeks, 4 days ago on You’ve got to see what Gavin did today
Good going Gavin! Very nice you even remindeed them to fax- thats thinking ahead!
2 weeks, 5 days ago on Check out Gavin’s MAJOR victory
I misunderstood when you mentioned Dr Reynolds I thought he was the new DR you were going to see and was the one who hadnt called you back. There is no way either Pattie or Reynolds can contact another specialist to take a look at the notes without Gavin being present ? Most Drs /hospitals have some kind of access to other professionals who have treated certain disorders/diseases and to ask opinions to how best to medicate or treat. Maybe thats an option or even put Gavin on video feed at the Drs office that is nearby and he can be observed or asked questions that way. I know even in our small town many Drs are doing video counseling sessions.... if it was explained about Gavins difficulties traveling that could be put on the table as a possibiity for him.
Hoping for the best for Gavin ....
2 weeks, 6 days ago on We’re having to make a very, very difficult decision
Would it be possible for Dr. Pattie to confer with Dr Reynolds over the phone or via skype or whatever? Dr. Pattie has worked with Gavin for some time and you all are comfortable with her opinion.
If you made the trip, unless there was something radically different in the treatment that could make a difference in Gavins quality of life, wouldnt you also be facing numerous trips since Reynolds would have no face to face time with Gavin to make a diagnosis of something so rare? I wouldn't think anyone could make a decision based on one visit and he would have literally years of case notes to read.
I hope you find some answers,
So much of what youre seeing is teenage angst. In reality Gavin likely doesnt have the capacity to control what he's feeling nor might not even understand it. I don't know how you have dealt with the changing body/feelings issues. The whole incident also started with someone he had boundary issues with - bluntly your mate.even though it is his Mother.
Remember back when you were 14, things were changing (yada yada yada) He is going to challenge you, he will need to learn where he stands. You didnt let him 'win' and he continued up to his room.
Teens love to press buttons, in Gavin's case, it needs to be monitored closely. Perhaps this would be a good time for his counselor to talk to him again about boundaries and how important they are to give him a chance to understand it.
3 weeks ago on I’m pretty sure I was threatened by Gavin
I hope you find out whats happening soon.... if the new med for this CCD is a steriod, how is this going to work with his auto immune stuff? Is this different diagnosis going to make any difference in how he will receive treatment? And if it is truly CCD, shouldn't he have already regressed by now since he is much older than CCD kids.
I would seek a second opinion also.
3 weeks, 1 day ago on Heartbroken and Devastated
Unfortunately this is what schools are required to do.... once so many days are missed due to whatever reason, these letters go out. I really wouldnt put off dealing with it, as some states can and do make the parents responsible untiil they are able to prove that the absence was due to illness or some other valid reason. In our state, DHS (CPS) is called, and FIP benefits are reduced if parents don't get the kids back in . Other states impose a fine or community service.
Gavin has a good reason to be out... just provide the info, and you will be fine as long as you have some type of educational plan in place whether it be homeschooling, online courses or whatever the case may be. It's not like you want him out of school, it is what it is.
These truancy laws were set up for parents who arent being responsibe and for you it isnt the case. You want him to go, he just can not right now. Gavin himself I am sure wants to go and interact and be part of school, it just isnt possible.
Sometimes it's hoops, but you will figure something out.
3 weeks, 6 days ago on We received our first #truancy letter today
Lots of meds either induce movement disorders or make them worse, it's not uncommon as a side efffect that can indeed get in the way in everyday living.
I thought your Dad's idea of his friends staying in the car was brilliant. Did his friends stay there? If so, he maybe has more ccontrol that what you think. He knew where they were yet could keep them away during the times he needs to. He was given a reason 'why' they couldnt attend and accepted it because it made sense.
I hope things do improve........... also is it possible since Gavin is now a teen he is actually doing a typical teen behavior and ignoring you when you call?
4 weeks, 1 day ago on Operation Hope: It saddens me to share this tonight
Have you already or can you get a note from his Doctor saying he should be out of school right now? Since he is in high school it might make a huge difference in how it's recorded. Hope the missions are staying positive and you come to some decision about his schooling quickly. Perhaps someone at the school will have some decent suggestions for dealing with this.
1 month ago on Gavin really struggled today :-(
I actually figured either choco;atte, coffee or some kind of food... but then again I have been married 30 years ') I am a coffee drinker, have you thought about keeping a jar of instant around? I know it's gross if you dont mix it just so, but it does the trick!
BTW I had one of those one cup wonders nd gave it to my sister in law right after I found out how much those little Kcups cost!
1 month ago on Mama’s Have Needs Too!
His 'friends' might soothe him. Granted he sounds pretty laid back about his infusions, but he still might be frrightened or upset about them deep down and doesnt know how to verbalize it. I would kind of listen in to what he and his 'friends' talk about. If it's things in his present and real world, like it was with the windshield wipers the other day I bet it is a soothing thing and is completelly harmless. It isnt hurting him or anyone else, so you can only do what you can do.
1 month ago on What am I supposed to say to my son?
Just a thought.... a few days ago, a very big deal was made out of one of the other boys making a call on his own, and talking to his friend.... did Gavin pick up on this and suddenly start using his own 'phone' to call his friends? If he sensed it pleased his parents, perhaps he is trying to please you by making phone calls; If you think this might make sense, he is just trying to seek your approval and thank goodness he is happy, talkative and sharing his missions. It could be way worse if he goes to his dark pl ace. He obviously picked up that winshield wipers were important, and was applying it to his fantasy world.
I hope his meds start kicking in better soon for you all, and his friends take a less important role for him.
1 month, 1 week ago on My heart is breaking tonight and here’s why
I would use the Dell Venue to tweet and to post while I am and about!
1 month, 1 week ago on Dell Venue Pro 8 Giveaway
Meg does bring up a good point, puberty can and will change things. Hormones play a big part in how effective meds are or arent and perhaps it is time to either try a new med that isnt as dangerous to Gavin or to reviisit some meds tried in the past that dont have the side effects. ADHD is one of the things that usually requires a med change at puberty or an adjustment in dosages due to hormones. Schizophernia usually isnt noticed until puberty ( for the majority of people) and so those hormones Gavin has surging through him I would think would be playing a huge role in his behaviors.
I can only imagine how confusing and how scary this is to Gavin who may or may not understand whats happening to him.
1 month, 1 week ago on We have an emergency appointment for Gavin in the morning
At least you have enough now that it has bought some time to get this ironed out. I would start with the Drs office and tell them what you got compared to what you understood the way he should be being dosed. If you dose him the way the pharmacy gave it to him and he switches on day 6 rather than day 7 would it be alright?
1 month, 1 week ago on This is where we stand as more problems come to light
Hoping the meds start bringing him back soon... and you're right, at least he is happy and he is communicating with you. There will be light again.
1 month, 2 weeks ago on My heart is breaking because we’re losing our son
This really blows for Gavin.The meds, the reaction to them, starting over and now missing school :/ This poor guy can't get a break it seems.
Can his homework or assignments be sent home and one of you help him? It likely wouldnt be a good idea to go unmedicated to school and he is going to fall behind making a success there even tougher.
1 month, 2 weeks ago on The Gavin Crisis 2014 (part 2)
You mean what happened the last weekend? So 4 or 5 days ago? Hoping all is well and if precautions need to be taken they have beeen.
1 month, 2 weeks ago on The Gavin Crisis 2014 (part 1)
Hopefully this is something simple such as him rubbing his eyes a certain way or allergies or llack of sleep and not some serious disease he might be dealing with. Not long ago you mentiioned he was going into the bathroom a lot. Is there anything in the bathroom or his bedroom or something new at school he is being exposed to?
You're very lucky to have such good insurance!
1 month, 2 weeks ago on My heart is breaking and filled with fear tonight
If you can, put your meds right nect to something you do everydaay at the time you're supposed to take them. I take morning meds they are near the coffee cups. I take night meds they are by my alarm clock.
Do whatever works for you but dont go forgetting those meds .
1 month, 3 weeks ago on I screwed up and now I’m paying the price
Well thank goodness it is all starightened out and the infusions are running only a day late. Maybe the school can send his assignents he might have missed home or if he has study hall he can get the work dne he needs to. It would be tough for him to get too far behind so soon into the year.
I have a med I have taken for well over 20 years......... it is a month to month because of insurance and it isnt a controlled substance or anything. Luckily my Dr has remeined the same for most of those years and I have always had a a 2 week supply just in case. I hear ya on insurance and meds sometimes it makes no sense.
1 month, 3 weeks ago on I have good news, bad news and worse news
Hopefully the meds show up Friday or on Saturday for Gavin.... crazy stuff allways seems to fal o weekends or holidays for sure.
1 month, 3 weeks ago on My heart is heavy and I’m freaking out
Going from middle to high school, perhaps they are stricter on bathroom breaks there? Or perhaps he didnt know how to best ask too go? Yeah, accidents in high school arent going to be a good ting especially if he is trying to manipulate, but I bet it's a matter of not knowing how to ask to go. Lots of kids arent used to the schedule yet, and he is going to have to adjust.
1 month, 3 weeks ago on Already?? Are you fricking kidding me???
Just out of curiosity, have the autonomic crisis(es) and Gavins Schizoaffective Disorder ever been correlated? Could the one be a warning of the other coming on? And once he has gone into his 'manic' state, does his heart rate return to a more normal resting and active pattern?
2 months ago on Confessions of an #Autism Dad: I’m really struggling tonight
He will do just fine ! He will of course 'test the waters' but thats pretty much normal teenage behavior. Here's hoping for a good experience for Gavin tomorrow!
2 months ago on OMG we have high school orientation today
Usually your utility companies (including water) would like to get paid off than shut off a customers water. All ou can do is make a payment plan with them and stick to it. If you get it shut off at lleast here the reconnect iis expensive. There has to be some financial aiid if you qualify. When you call, also ask them about agencies that help.
2 months ago on BAD DAY – Gavin’s IVIG infusion was a disaster and now our water is being shut off
I get bumble bees constantly in the kitchen. The only reason I can think of is I planted a ton of blue and pink fllowers for the butterflies in the garden and to attract bees since there is a decline in their population. Oddly, I have never been stung when catching them but sure have had my share of wasp stings.
Never have had much odd flly in the car and its a good thing you werent allergic!
2 months ago on You will not believe what happened to me yesterday
Is he moving around at all? I notice whats measured is only about 1/2 mile in 7 hours? Was he visible to you during those times it seemed to dip? (meaning was he in his room or out of sight) What is his normal resting heart rate compared to what you're seeing?
2 months, 1 week ago on I think Gavin had an Autonomic Crisis today
Thts good news I bet your family's day was much better because of it. WTG Gavin!
2 months, 1 week ago on Today’s #Autism and #RAD Victory was awesome
You were pacing a whole lot! I guess being on hold isn't such a bad thing gonna rey this myself. Good job on all the steps!
2 months, 2 weeks ago on Welcoming a bit of positivity into my life tonight
Hoping you all get feelling better summer colds are the worst but I know so many who have them right now. Everyone is miserable.
Do what you can, youre only one fella. Take some time to nap or time to be kind to yourself.
2 months, 2 weeks ago on Today is a true test of my #SpecialNeedsParenting abilities
You know how the other day you thought the PICA was making another appearance possibly? Could what he might be eating (non food) be scratching his throat? I mean huge bites will make you have trouble swallowing for sure , but is there anything in his room, bathrrom etc that might be miissing, distrurbed or anything? Maybe the two are connected. You might have to start cutting his food before serving it..... that way he has no chance at monster bites and taking away his opportunity to bolt his food down would help him get it down. I know you mentioned too he has to eat quickly, but precut bites he could actually get iit down quicker. He might also decide rather than have his parents cut his food he will take smaller bites.
2 months, 3 weeks ago on #Autism and #RAD Parenting – The frustrating heartbreak
Thoughts & prayers hoping Lizzie finds some relief and some answers tomorrow!
2 months, 4 weeks ago on PLEASE – We need your thoughts and prayers today
Urology is a good step, would rule things out (just in case) and I doubt he is going to like the exam which might not be a bad thing.
It's control.... the door alarm goes off, He did it 3x while it was Lizzie alone and then tried to defy her by getting you on 'his side' by letting him go and the alarm waking his brothers for the fourth time. He likes bothering his brothers, and he likes bothering his Mom as well as causing some disagreements between you two.
Is there any way you can move Gavins clean clothes/dresser anywhere else and just give him ONE outfit per day say the night before? It would stop him from mixing pee clothes and clean ones.
3 months ago on There’s no end to the frustration of being a #RAD parent
Sounds pretty normal really. People miss their life before kids (autistic or not) , life before marriage, life before this or that. The grass is always greener .... and no one really knows with certainty what life would have been like years down the road had you turned right instead of left. We all live the life we are dealt or have chosen it all comes down to the grace you choose to live it.
3 months ago on I’LL ADMIT IT – I miss my life before becoming an #Autism parent
Doesnt seem unreasonable to me (time out) and actually sounds like typical irritating teenage behaviors . I would think besides his obvious other issues, adding being a teen in it isnt going to be an easy thing telling the difference between teenage angst and some of his other behaviors.
3 months ago on #Autism and #RAD – We are struggling with problem behaviors this weekend
I am glad to hear Lizzie had a good Birthday. Sometimes just quiet and simple things bring more joy than anything else. It was probably exactly what she needed.
3 months ago on I have some amazing news to share – I just can’t believe it
I llike all of the products I would keep the loot and use it all!
3 months, 1 week ago on Simple Summer #Giveaway: Cash, Beauty, Art, Jewelry and Flip-Flops (RV $250)
Didn't the psychologist have any ideas or strategies to share with you if the test makes any difference at all? I mean really, you can only do what you can do at this time, it's not like the tests made or broke anything as Gavin is still Gavin, It might have explained some school issues and maybe ways to communicate better with him, but iit was just a test.
Stand by Lizzie as best you can, you are in my thoughts and prayers.
3 months, 1 week ago on #Autism and #SpecialNeedsParenting is breaking my heart
No one knows the future.... with that said it probably doesnt ease the worrying Gavin's problems are complex it's something you have known for some time now, and a Dr or a test isnt going to change that. It might make understanding certain things easier, or give an explanation to something perplexing you but a test doesnt always give the whys. A test is only a tool.
Has he been given the WISC-IV before to compare this to? (likely he has had it or something close) If so, are the scores improving or declining? This is an intelligence test for kids, so perhaps he has done another test like it at another Drs request. His psychiatrist could easily explain where he (Gavin) is intellectually with the results.
Gavin's 'nornal' my not be other kid's normal but he can still be happy, he can have joy.
3 months, 1 week ago on My heart is breaking tonight
"Unfortunately, he was apparently told it was wrong and instructed to fix the sentences and turn it back in on Thursday morning."
I am going to play devils advocate on this one because I worked in many classrooms with special needs kids. ...
I know you went in and you spoke with the teacher and you were aware of the rules as was Gavin and you caught him at home copying. You also state the teacher said "She’s said that was very clear to the entire class because it’s been a problem with other students in the past. " She (teacher) could quite possibly has never had Gavin do this before and may be of the mindset that the first time they do it, they get a warning and they have to redo the assignment.
Its good youre staying on top of things so many parents dont bother being so involved.
Pardon the typos, my eyes are super tired. I hope everything works out.
6 months ago on I NEED advice: Can I please pick your brain
I think everyone but especially women feel like this at one time or another.(even those with those perfeect lives I suspect so too) You give so much you feel as if there is litttle or nothing left of yourself. If there is an area that you can say 'no' to ... perhaps to one small thing and take that small piece of time to find a small piece of strength it can build and grow. Acorns after all become trees.
Take some time for you. Take a walk enjoy some simple thing. It wont make everything rosey and perfect but it might give you perspective.
7 months ago on I don’t fucking care anymore.
8 months ago on Raise Your Hand if Your Elbows are Ashy