A Letter to my sister.

This is the letter I wrote to my sis after the CDRC appointments I had with Gavin and this is what they said:


Hey sis,

I am sorry that I didn’t email you the info on Gavin I totally forgot. It has been crazy around here and when I got the diagnosis on Gavin that also came with a lot more work for me. So I have been working with mom and Paul about some of the ideas to help Gavin at home and school. So here it is……
Gavin has been diagnosed with PDD-NOS, in English that stands for Pervasive Developmental Delay-None Otherwise Specified. He is at the bottom of the Autism Spectrum Disorder, witch is good. They said that they don’t really diagnose Aspergers Syndrome till ages 7-11, when they do not mature with there peers and other symptoms too. So pretty much he has many symptoms of Autism but has many normal to above normal intelligence. They also diagnosed him with Pragmatic Language Disorder and that means: Pragmatics is the area of language function that embraces the use of language in social contexts (knowing what to say, how to say it, and when to say it - and how to "be" with other people).
Children with pragmatic difficulties have great trouble using language socially in ways that are appropriate or typical of children of their age. They often do not understand that we take turns to talk, and they will "talk over the top of you" at times, or, at other times respond to what you say with inappropriate silences, or in a voice that is too quiet. They may interrupt excessively and talk irrelevantly or about things the listener shows no interest in. Their communicative behavior often appears rude and inconsiderate.
They often do not assume prior knowledge. So for example, one boy explained to me in minute detail how to wash a car, wrongly assuming that I needed (and wanted) the information and that I had never washed a car.
On the other hand, they may assume prior knowledge that the listener could not possibly have, and launch into a long disquisition without describing in sufficient detail the participants, location and general background of their story. They can go on far too long telling stories, and include so much detail that the listener becomes disinterested.
Hope that helps you understand. He was also diagnosed with poor perspective-taking, here is what that means: the ability to understand a persons view point, individual and situational awareness, recognizing when things go wrong, empathy involving feelings of concern for another person or group.
I know this is a lot but figure you want to know it all and be able to understand. The one that causes most concern is his sensory. He has very high sensory needs. Children with Sensory Processing Disorder (also known as Sensory Integration Dysfunction) often have difficulties regulating their energy levels. Many times they can appear "silly" or "hyper", you know the hand flapping, and the jumping up and down, and spinning, and there are times when he just gets up out of the chair from the computer and talks funny to himself goes in the kitchen and gallops around and flapping. The reason that is the biggest concern is b/c I can’t help him so much with that, its above me, and that is really going to affect his ability to learn and focus. You know how Gavin is, he hears, sees, and smells everything. I did get some helpful tips from the CDRC that I can do for him at home to help, but I have only gotten summery reports I won’t get the full reports for another week or so. I hope that I was able to cover it all for you, I know that you and Brian have always been concerned for Gavin and me when it came to understanding him, and I will always appreciate that. Thanks for being you love you and if you have any questions let me know.

Well here’s the thing, I know I have not been writing about Gavin in awhile its just been so hectic and trying to keep up with two blogs has been kind of hard. I will get you caught up on some things that I have been dealing with when it comes to Gavin.

We are in our own place and he has made some really great friends here. He has even branched out of the train, sharks, and youtube, obsessions to venture in new interests to play with his friends. He has a new love for transformers, although this one I wonder if its to fit in with his friends? I will take it, whatever reason he has for the transformers it’s still good. He is also not really into mommy anymore, I know can you believe it, I always wondered how it would be, or if it would even ever happen that I didn’t here play with me mommy every 5 minuets. I have to admit I did get a little upset for awhile that he didn’t need me anymore it was almost like having postpartum. I have gotten over that and I am enjoying watching my boy “sew his roots” as they call it. With these new friends comes great things for Gavin, but it also has its set backs, for instance for the past couple of days I have heard the “take a poop” song in car song by none other then Gavin. I also have to remind him that we don’t call names like idiot and butt, hmmm…my oh my gotta love boy talk. The fights to have to talk about the fights, that has to be the most annoying thing ever. I hate hearing “B” “Gavin is being me to Luke”, or hear Gavin in the next room saying “hey I’m telling my mommy”, or “ my mommy said not to do that”. Sometimes Gavin can be a little bossy, I guess that would be the work to use. He is not when it comes to playing something he will either play with them or not, that is one thing about Gavin if he doesn’t want to play what they are he won’t, plane and simple he likes to play what he wants and if they don’t want to then he will play by himself and it won’t bother him either. He like to play mediator I guess, when they are fighting and if he is not in the fight he will try and fix it and get in the middle and I guess play my roll. So yeah I love that he has these friends but I really could live with out the fights. Ohh and transforming those stupid transformers sucks! Just had to get that out.
The only big issue I am having with Gavin right now is the going to the bathroom, or should I say lack there of. For awhile now I can’t seem to get him to go to the bathroom when he has to go. I have always had some issues with going number 2, but it was always in phases, he would go #2 in the toilet for a month or two with no problems then we would hit a phase were he would try and hold it and not go and then poop some in his pants. Now we are in the phase were he won’t go to the bathroom and I can’t get him to stop doing this. I do not get mad at him for this I tell him that I am disappointed but I never yell or spank or punish him, because I think that made it worse. The other day we went over to Brian’s dad’s house for dinner and sure enough Gavin peed in his pants and I was so embarrassed, he hasn’t done that in forever I have no clue why we have started that. He did that not once but twice that evening and pooped a little bit too. It was nice that I was with people that didn’t mind at all or comment on it, and when I was upset all he did was try and comfort me about it and say it wasn’t a big deal he just was to excited and having fun to stop. I know that is what most of this is, that he really just doesn’t want to be bothered with going to the bathroom. It’s like I know the problem but yet I can’t seem to think of a good way to fix it. I have other great news about Gavin, I have an appt to have him evaluated at the CDRC on the 17th before school starts. I am so excited!!! I really feel that only good things can come from this and I will do everything I can to get him the therapy he needs. I can only do so much at home, I do the best I can with him but there are certain areas that I need professional help with. So I will be writhing soon about what happened with the evaluation.

New stage with age

I want to write about how Gavin has new friends that he can play with everyday that live next door.  Its great there are 3 boys with all ages one almost 5 close to Gavin one that is 6 and then one that is 11.  There yard seems to be the major hang out too for all the neighborhood kids so there are many  more kids that play over there.  One more 5 year old and some cute girls.  The mom Cheli is so sweet too a really good mom has the same rules as me and no weirdness that I have seen yet..lol.  So of course Gavin loves to be over there they have many things to do and play with.  The other day him and the other two 5 year olds got play guns and ran though the fields looking for Raptors to kill it was so neat to see them in the field together.  They also come over here and play at my house and they are good boys too not hyper or fight or rude they behave themselves.   Its is nice for Gavin to finally have friends that he can play with everyday and really help him develop socially.  He still plays alone when they are around but it’s a start and he is getting better like they all ride bikes together. 

 

Now With all that great stuff I have something negative to write about too…..I hate it.  I believe that this is a stage of age more then a part of his disability but it still doesn’t make it easier.  He has started talking back to me in ways he never has before and I mean rude and hateful and such a smartass.  Sorry I know that sounds harsh but the only way to describe it.  I know that all that attitude is an age thing and will go away this consistent discipline. Now here is the thing with that he is also doing this hitting me thing which he has never done to me…….ever. I remember when he was going though the terrible threes ( not twos he was good then) he would raise his hands at me like he was going to but never did.  Now he is fallowing though and actually hitting me.  I am not sure it this is with the stage of age or what and now how do I handle it?  I do the best I can like last night I put him to bed with no snack no TV and it was early to told him that if his friends came they can’t play b/c he will be in bed.  He screamed for about 30 mins and then fell asleep.  But we went though it again this morning and now he has no computer for one hour.  Plus he sat in time out for 5 mins.  Is that going to work?  Now I have to start all over again with the chart thing b/c the other one was to busy and he didn’t seem to grasp it like I wanted him too and I think even myself got confused by it.  So back to the drawing board for me. 

Over the past few months I have really watched Gavin grow and I have always found it fascinating to watch him learn.  I have always thought that he had a sixth sense the Photographic memory were what he sees he remembers.  Like when he first start watching YOUTUBE he was about 4 and he can’t read so he also can’t type but Gavin had his own way to find the videos he wanted he mapped his way through videos. He would put it on the one that we saved to the desk top and with every video he clicked on he remembered.  So there were timed he wanted to show me a specific video and OMG!

Watching him find them were just amazing he would start on one and go though them with super speed before I could even see what he clicked on he was scrolling and clicking like he knew exactly what and where he was going.  He did too!!  He always found what he wanted.  Just amazing,  now he goes in the office with Paul and asks him to teach him something knew.  So b/c they are computers and he can see and touch what he learns instantly and remembers so he knows way more then he should at his age.  It’s funny when they talk about his sensory and how high it is, but more amazing when you see that if you teach him with things that are visual and able to touch, taste, and even smell he will learn instantly and remember it forever.  So know the trick is to figure out how I can weed that in the school?  Still pretty kewl to have a super kid.  

When you have a child with Aspergers and also symptoms of ADHD how do you know where to fix the problem and where it came form?  Is this particular behavior from the ASD or the ADHD, or just a normal boy or maybe if this is the result to bad parenting on my part?  How am I supposed to know?  So many questions and so few answers.  As a mom with a 5 year old boy with ASD and ADHD my patience was tried today.  He is potty trained but he has periods were he won’t us the toilet for poopy he holds it and get some in his underwear.  I always catch him and clean him and make him us the toilet to finish.  Well today he did that a total of 5 times I think.  So you can see the problem having to clean that over and over again is exhausting.  The last time I he asked me if I was mad and I told him no then he asked if I was disappointed in him and I said yes very.  Then he goes “ I am sorry mommy I just can’t control myself and don’t know what to do it my brain is says nothing” that is what he said to me word for word.  Sad right?  So I ran out and started to cry and asked my mom if she could finish for me and of course she did gave him a bath and everything did great with no sign of exhaustion and I know she is she herself isn’t healthy but still came though for me I love her.  Support is the key let me tell you.  So anyway I gathered myself in the mean time and read Ally a story and Gavin came over to listen too and then my mom put Ally to bed and we all sat in here and played play doh while watching MythBusters. 

I know this is all over the place but sometimes is hard to get your head straight after a day like this. Gavin had also been really whiny over everything. Food mostly he just wants snacks and I tell him no he needs to eat lunch or dinner and he acts like you told him he is never going to eat its meltdown central and he tore thing up and cried today.  He manages to calm himself but still it is so overwhelming and today didn’t even start off bad this one struck at lunch time.  I think he had 3 tantrums.  I also let him and his sister play in the sprinkler they seemed to love it.  Before that my mom and I sat out there with them and played you think that would be enough.  I also hate how Gavin can be so sweet but then yet not seem to give a damn if he hurts your feelings or if he does he doesn’t know why or how that whole knowing that you cause an event to occur yeah he doesn’t know.  What am I supposed to say when he tells me he can’t control himself and that his brain is driving him crazy (he also told me that today too) and is that really true or am I being played?  Is that part of who he is b/c of ASD and ADHD or am I the cause of this?  I’m I doing everything I should be doing?  And the number one question how am I supposed to know?  

So tomorrow is early intervention for Gavin.  This is to do some testing for school.  To see what kind of services he is able to get in regards to OT and PT therapy.  I really hope that I can get him some for the summer to help before he starts kindergarten. 

He is still doing very well with his sticker book chart and got a mid-week progress report and Paul gave him a surprise for doing such a good job.  No tantrums for the past three days and the whinnying is not half as bad as it has been.  So all I have to do is stick with and still stay excited about it.  I think I still need to get a good schedule down for him for myself to reference and monitor how long he does a particular activity.  I want to lower the amount of YouTube he watches.  He loves to watch those videos so much and will do that forever.  I know that is his comfort and keeps him content for awhile but sometimes he manages to get on one that is not so kid friendly. 

Well I will keep working hard with Gavin and hope that I can get him what he needs.    

I haven’t had a chance to write in a couple of days. Things have been busy around here and I have been trying to get things taken care of.  There was a day last week that I feel I really need to write about.  These are the times that I have had a hard time talking about b/c I feel guilty and that is an area I am working on. 

 So I read somewhere that parents of a child with Autism can be made to feel inadequate no matter how much they try.  Well that could have not felt more true to me then it did the other day.  I had started the day making him and his sister breakfast like always.  I also have been working on his charts for a couple of days to help his behavior.  Then I spent sometime with him building a boat dock out of his Lego’s.  We were making a movie about a shark that destroyed the dock and the people had to escape on a boat.  It was a lot of fun and we enjoyed it.  I also jumped with him on his trampoline.  But then I had work to do. So I sent Gavin outside to play and laid Ally down for a nap. Gavin of course Gavin kept needing things or wanting my help. I do I have always done to try and avoid tantrums and crying which is tend to his every need to make him content thinking that this will allow me to do what I need to, not realizing that I couldn’t be more wrong.  After what felt like 500 trips in and out for him and I think he stayed out there for maybe 15 minutes after I finally got to sit down. He got a pencil from my sister Taylor and sat next to me and started sharpening it.  He then asked me every 30 seconds to look,look,look. No joke either it really was every 30 seconds.  So after about 5 minutes of that over and over again I was beginning to really loose my patience and it was showing.  He finally got it sharpened and started scribbling on a piece of paper.  Then he rolled it up and was pretending to be a mail man and delivered it to me. Even though I was busy working on something I still played along.  I opened it and made something up to read to him that I thought was funny, guess he didn’t.  He said no that is not what it said and then started to try and tell me but I didn’t follow.  It is really hard to follow some of the things he says b/c that is part of his speech delays.  His receptive speech is behind.  He also got upset with me b/c I wasn’t looking every time he asked me to.  So I think I just lost it at that point and got up from the table and told my mom I needed a minute.  She said ok and I went to her room and just started crying.  That statement I started with said it all.  No matter what I did, how hard I tried or even if I managed to be perfect it was never going to be enough.  I know it not him being a brat.  I feel that he really had a hard time know that he is not the only one with needs and wants.  To him everything revolves around him.  It is also from where I have been the only one taking care of him for so long and I did do everything when he needed it.  But I am really working on that for the both of us.  So that is my story and I know that it has helped me to talk about it and it’s ok to take a minute and I shouldn’t feel guilty. 

Well today seemed much better for Gavin.  He and I went to the train yard and he was just so excited!!!  Jumping up and down, hands flapping, and then at one point he was rambling on about stuff but I couldn’t make out what he was saying or talking about.

I am still having trouble with him eating.  He wants to snack but when it comes to meals it’s just hard to get him to sit at the table and eat.  He used to not have such and issue with that.  He is also starting to really invade his little sister’s personal space.  Don’t get me wrong he and her play very well together.  But from where they are home together everyday he gets out of control.  He has said things to me like he doesn’t know what he is supposed to do.  I really think he means that.  He acts like he doesn’t know what he is supposed to do with himself.  There are times when he is showing me affection and it gets a little to close to personal places and I try and tell him but he has yet to really grasp it.

The way he is with  Taylor (my younger sister who is 19 but severally mentally delayed) is frustrating b/c he says some really ugly things to make me feel like he doesn’t like her. He gets really upset and comes to me or Paul and says that Taytay keeps starring at him and he doesn’t like it.  No matter how we explain her to him he just doesn’t understand. He is so smart, learns and memorizes everything but still can’t understand Taylor it’s odd. There are times where he likes to play with her and he is nice to her so just hard to figure it out.

My mom and I started jotting down stuff for Gavin’s new schedule and rules and charts.  I am starting a new behavior reward system along with other charts, now that I have help to make a really good one that fits him.  I found a really good one with feeling faces to help show him how he is for the day.  I want to really work on the whining and tantrums.  So he will learn to communicate how he feels. 

 As I sit here and write about him I am finding it more and more difficult.  There seems to be so much and it’s hard to separate.  Even though it was a good day today and I love him so much and he is fun. I hate the nights like tonight were I dread the next day with him. Just seems so constant.  What Gavin needs, what Gavin wants, when he wants it, how he wants it, what will set him off.  Then I feel like Ally gets less of me and she is in the terrible twos. 

Well I am in hopes that I can get him on the schedule and really work hard on his reward stuff and get him an activity and play dates for the week.  I think that it will make my life much easier once I get it started and get though the first week of it.

Well I guess that is it for now. 

Welcome to my world with Gavin having what I call “Autism Bad Day”.

Right from the very moment he wakes, I can tell if it will be one of those days.

He will either be really whinnying over nothing and I mean that I will have no idea why he is whinny. Or he will go to do something in the morning and its instant meltdown.

So I prepare myself for what I call “A Bad Day”.  I have yet to find a reason why he has them they don’t seem to be related to sleep wither it be to much or not enough. Bad dream maybe? Who knows?

 

This morning Gavin got up and was whinny really whinny and he got what I thought was good sleep.  He then started playing legos and I played with him.  I was building him a house and playing at the same time.  He then went to play with his lego train and something was wrong with the wheels and he was getting upset trying to fix it.  I asked him to let me help him and when I started to he got even more upset and said I was doing it wrong but wouldn’t tell me how. I still tried and yet it just did work with him screamed and cried at me that I was not doing it the right way. So I gave it back to him and he took it over to the track he built (witch is missing a piece….also setting him off) he tried playing with it and something went wrong with the wheels I am still not sure what but he wasn’t happy.  It was a major meltdown. I removed him from the living room to a spot where I told him to calm himself down.  I got a box and put his lego train up until I get the instruction booklet to rebuild it properly from where his younger cousin broke it.  He then seemed to top his previous meltdown with a much bigger one.  I had to put him in the bathroom and shut the door to make it a little bit quieter till he calmed down.  It lasted about 10mins but felt like forever.  He then came back and told everyone he was sorry for screaming.  The though out the day it’s just constant. You can’t do one thing for him with out him asking another and another, you can’t even finish the first demand before he has moved on and wants something else.  He and I went to town to run errands and that was not too bad he listened to his music for awhile.  Then when we got into town and he saw the trains he got all excited and told me to look, look, look, look. Even if I am looking he still says it.  Then he just kept asking questions like where are we going, and then I can’t even tell the others b/c they are worded so differently that most of the time I don’t know how to answer.  So that can get a little annoying.  He whined when I told him that we are going to the grocery store he got all upset and started begging to go to a store with toys to look at. 

We go to the store and he actually did quiet well.  About ten minutes before we were done he did get a little antsy.  He was walking around me kind of spinning or rolling his head saying loudly there so much food in here, looks at all this food. 

When we got home he got on the computer for a lil bit and then started aggravating his little sister getting in her personal space.  Dinner was a nightmare he kept playing with his fork so had to take that away.  He took one maybe to bites of food and was just babbling random things that you can’t make out and rubbing his head and eyes.  He said he had to pee so I let him get up and then had to go get him out of the bathroom he was standing on the side of the tub with the blind’s cords in his mouth.  I got him back at the table and he still didn’t eat and so I let him up told him nothing else to eat.

Bedtime not as bad as it could have been whined and went and spun himself in my mom’s chair.  I got him to let me brush his teeth.  Put him in the bed and whined about his tummy hurting b/c he was hungry, he called me in there for that about 4 times, then he wet himself so that had to be changed, and then when that movie was over I did let him watch another and omg if he didn’t pick the one movie I couldn’t find.  So meltdown meets whining loudly. He saw me looking for it I told him I was looking yet he still cried loudly why it is taking so long.  Then the DVD didn’t start fast enough, then the menu didn’t start fast enough and all this was such a big deal to him. He made it seem like it really did take forever.  Then when I got to the part he likes he was fine. 

So that is what happens on “A Bad Day” with Gavin and autism.

 

Much patience,  B

5-3-09

Here lately I am becoming more and more upset with myself when it comes to Gavin and his autism.  I know that going though the divorce is causing most of my feeling.  Because of all the thinking I have to do about that it’s hard to have the patience to deal with Gavin.  If it wasn’t for my mom and Paul (especially Paul) I don’t know what I would do.  The reason I say especially Paul is b/c him and Gavin have seemed to just bond they clicked almost instantly.  It may have been Gavin’s hunger for a male role model, some one to look up too.  Paul makes sure Gavin knows that he understands him and that is something that for a long time it was only me.  It is nice to have the help that I have always wanted for him.  But I am going to have to learn to not feel guilty.  From where it has always been me for everything now that I don’t have to it’s hard.  I would have to beg his father to do things with him, or take him somewhere.  Now I have someone coming to me with all these cool places and fun ideas for Gavin maybe I am the one lacking…lol.

 

Gavin has had a meltdown about every other day or so.  They don’t last long witch is good.  But still hard for me to grasp the fact that it’s not me.

I wasn’t a bad mom and raised a brat.  Its also harder for me watch him here b/c there are some many things he enjoys here and does here.  His sensory is so high. I couldn’t even begin to imagine what its like for him

Hearing and seeing everything and I mean that he hears and sees and takes in everything around him.  The thought of that alone makes my head spin. Then his inability to say what he sees or wants at times.  He has the words but for some reason when he goes to tell some one it just doesn’t come out right or it may not come out at all.  I am still in the beginnings of all this too.  He is only 5 and still jumping though the hoops.  Gavin has the potential to really make something of himself I just hope that I give him the right tools.  Well I am going to try and start journaling about him a couple of times a week so that I can track his success and learn a few things myself along the way.

 

Write soon,   Brandy