His Strength

I have spoken quite a bit in this blog about Pake’s agression and strength….When I speak of it to others, I usually get a very clear look of “yeah right, what an exaggeration!!”……I have even heard some family members say behind my back, “what adult can’t handle a seven-year old boy physically?”     Well yesterday while at the therapy centre I witnessed my seven year old boy lift a table with two grown adult women sitting on top of it completely off the ground by a good six inches with only his legs!!!!   These two women were talking about it afterward and figure between the two of them plus the table, Pake lifted just under 300 pounds !…..and it was without any effort whatsoever….it was, however, in a fit of rage….no trigger…he was simply asked to sit down, something that he is asked to do every time he enters that room to do his work.  He did sit, then he swiped everything off the table, smacked the therapist, smacked his own face and threw himself onto the ground….the protocol at that point is for the therapist to simply move stuff out of his way to prevent him from hurting himself, but no restraint because restraining usually carries on the rage…..the therapist handled the situation quite well in my opinion….it was of course hard to watch….tears streamed down my face…..we all feel so helpless and wish we could just understand the severity of the reaction, wish we knew how to help him….it just doesn’t seem fair that he should have to live inside so much chaos….watching him, it was quite evident that he needed to get this out of his system.  Pake scooted under the table a little bit and pushed the table up with his legs…the therapist sat on the table to hold it down, but she found herself being lifted as well…the supervisor came to her aid and sat on the table too, which only periodically made Pake set the table back down, but then they both found themselves in the air !!!!   The entire time Pake lifted that table with his feet he was screaming and biting his wrists until they bled….But the whole thing only lasted about 4 minutes….then he stood, went to the playroom got a blanket and a pillow and curled up on the floor…..they let him rest 10 minutes and he came back to the table to work willingly and the rest of his day was happy.

Bedtime

awwww, I love bedtime!  not because I get free time to myself but because bedtime is an amazing bonding experience!!!  It changes from time to time…It needs tweaking as time moves along, but this is what we’ve been doing, basically, for quite a long time….

I start bedtime routines now at 7pm…Tues, Thurs and Saturdays include a bath (can’t do it everynight because their sking dries out so bad and causes more scratching throughout the day which is already an anxious habit)….but basically we all go into Pake’s bed because he has a queen size bed…and we read a book….then I sing a song that is most geared toward Pake while give him a deep pressure massage with lotion….(I used to go to his room and give him lotion to settle him down when he wouldn’t go to sleep for me, then I found out that was rewarding his screaming behaviour, so i started doing it every night as part of the routine and once I left his room, I never had to go back again!)

Then the girls go to their rooms….I read each of them a story and they read me a story each…then give them some lotion to rub into either themselves or sometimes they enjoy spreading it all over MY back…but this is a sensory thing for all the kids, just in different ways…the girls like it on their hands…and they like make designs with it, lol….then i tuck them in and sing a song for each of them (all three kids have their favourite song that makes them feel special)…..then its lights out and i leave….

Mallory would sometimes put up a stink, screaming and hollering and throwing herself off the bed onto the floor…If i came back in the room, that would reward her because basically she didn’t want me to leave….so after talking with therapists, we decided simply that she needed to learn more appropriate communication…the need itself for me to stay in the room could be weeded out later, but the screaming HAD to stop….soooo I would stand at the door and say, “If you stop screaming I will come back.”   Even if the screaming continued for half an hour, me repeating that sentence every time she took a breath, I would still come back the minute the screaming stopped…and when I came back I would say “Oh. Good job not screaming. Now I can come back.  I don’t like screaming.  It hurts my ears.”  After several days of her seeing that I would stay if she didn’t scream, then I would change it up and say “Oh, you need to ask me to stay.  Say Mommy please don’t leave yet.”   After a few days she picked up on that….then I changed it up again and said, “What do you want me to do for you if I stay?”   Sometimes she would ask for another song, sometimes she just wanted a small drink of water….I let her know that I would only do one thing and then I had to leave.  And by that time I was able to simply say goodnight, get kisses and hugs and leave her room…

oh, and by the way, something that helps me out immensley is the fact that I do close the door, but it is only a half door….I have the door cut off all the way across just above the door handle…kind of like a horse stable, lol….they don’t want to be cut off from the world, the cat wants to jump in and out, I want to peek in without disturbing them by opening a door, but they need the door on there to provide boundaries…even though they can open the door easily, it still shows them, that I have left and they need to stay in bed…

Expectations

Wow!  Mallory showed me once again just what she is capable of !  Mallory’s choice of coping mechanism is to take flight.    She can go for longer periods of time now, I think its been over three months since her last flight, coping with life and jumping hurdles dropped in front of her….which from my perspective, although it is a relief, is still a problem, maybe even more severe than before because it is unpredictable….Just when I, or her teacher or enhanced support worker or whoever, lets their guard down and is confident Mallory can deal with the situations as they arise, she takes flight.  This morning was one of those mornings.  For months she has walked to school, slightly in front of me, but alongside her sister.  She takes the same path daily, one that I am completely comfortable with, one that is quite safe.  Once We get to the front of the school Iget kisses and hugs from all three, but at the gate to the kindergarten door I wave goodbye to Mallory as she goes in the gate to meet with her Educational Assistant and she plays outside for a few minutes with her classmates until the bell rings at which point they grab their backpacks, line up and head inside the school.  Once she is safely inside the gate with her EA, I deliver Pake to his EA inside the main doors and Vanessa walks to her classroom.   But this morning was different.  This morning was too cold…22 degrees celcius below freezing point, with a windchill factor 10 degrees colder…can freeze exposed skin very quickly.  So, with the windchill warning, the school was not allowing the children to play outside…they were to come directly to their classrooms.  But Mallory was still expecting to see her classmates on the school yard.  She paused inside the gate, then turned quickly and ran for the road.  I was about twenty feet away from her and holding Pake’s hand.  To run after her meant leaving Pake unsafe.  Aaaand as soon as Vanessa noticed the chaos beginning, she burst into uncontrollable tears, afraid for her sister.  I shouted instruction to her to go get Pake’s EA as I took off on the run for Mallory.  Vanessa froze in her anxiety and her emotions were too far gone to follow through with the request.    My plan at this point (remember this is all happening in a 0.8 second time frame) was to sprint as fast as I could tackle Mallory, throw her on my back and run back to Pake before he took flight in the opposite direction as he typically does when emotions are high.  But when I got to Mallory, Pake’s EA was standing with both him and Vanessa.  She waved at me and took the pair into the school.  that freed me up to deal with Mallory in a more appropriate manner!  I am so grateful that Pake’s EA was close by. 

      Once caught, Mallory goes limp.  She is dead weight.  Although my first urge is to pick her up and breed my own anger, I knew that was not going to help anyone….instead I counted to five, picked her up by the armpits and dangled her over the ground repeating “feet on the ground Mallory.”   She was screaming and beyond reasoning…I needed to calm her down and tried to remember everything I had learned from “The Explosive Child”  book”….  I started out saying “I know that you are angry.  This morning is happening differently and you don’t like different.”   She grabbed me by the coat collar and started shaking me, but to do this her feet were on the ground which is what I wanted in the first place, so I commended her.  “Good putting your feet down.  Now let’s walk to the door and find something the same about our morning.”  

      At this point I have an audience…at a distance, but still an audience.   Mallory kicks out at me.  “Oh you are still angry”   She growls and screams at the top of her lungs.   The screaming and the kicking carries on for several minutes.   By this point she is far beyond what that book can possibly help me with.  She simply needs to be calmed down.  Calming cannot be viewed as a reward when things get this far….The second she stops screaming to take a breath I say “you need a hug” and I pick her up….but I don’t move toward the door, I just hug her and let her hug me back and when I feel the tension leave her body I set her down and said “It’s too cold to play outside so your friends went inside.  Let’s go inside with them too.  Are you ready to walk?”   She walks with me, head down and still sobbing a bit, to the door.  The door is locked.  I know this is for safety reasons, but at this point I’m pissed.  Mallory throws herself on the ground and kicks the door and screams as loudly as before.  And that’s when all my reasoning left me.  I picked her up and let my anger breed.  I marched heavy -footed to the front door of the school, cursing a blue streak under my breath !   I know that it was nobody’s fault..I know Mallory was still teetering on the edge of breakdown when we reached that door…I had been proud of myself for getting her there in that way…but my physical and mental strength were honestly zapped by that door being locked….and I was just about to lose it when I heard my name being called.  I turned to see Mallory’s EA holding the door for me.    She explained that she was sorry that she wasn’t there to accept Mallory, but she had just had to restrain another child and get him to safety.  Was there something in the air ?  Goodness!!!

The Power of Rewards

Motivation is key for anything !  But where and how do we find motivation?  We need an end result…We can motivate ourselves to lose weight by thinking of all the things we could do if we were in better shape….We can motivate ourselves by determining an appropriate reward for completing a certain task, for example, when I reach my final goal weight, I am going to go to Canada’s Wonderland !  I will finally fit into all the belts and can enjoy a really fun day with my son on the rides!!!   When I get my entire house organized and I have finalized a routine for myself, I will reward myself with a fresh new look…a haircut…and I’ve got one all picked out for myself, ready to e-mail it to my hair stylist !  

Well, rewards work the same way for kids!   I have talked at great length in previous posts about the happy faces that Vanessa draws on the calendar each day she comes home from school in an appropriate manner….at the end of the week, if she has four happy faces (we’ve upped the ante here…it used to be three), then she gets to have a movie night, complete with popcorn…..    Since we have started this and she learned she could trust the outcome, she has only missed movie night one time…and I believe that one time was a test to see if I was still really paying attention….believe me, the next week she was on track again…!!!    

So what reward have I got up my sleeve this time?   Welllll, I want Vanessa to start reading more….This is a task she struggles with, but it is mostly about motivation…I know she can do it because she reads my e-mails while she is standing over my shoulder.   But she plays as though she can’t read at all when it comes time to read a book….she cries and carries on that it is so incredibly frustrating…and no doubt that it is for her…I do know that she is reading at about a grade two level right now (she is in grade 4)….BUT, she has grade two books !  So, I printed out some pictures of bookworms in all different colours.  Each time she reads a book she can valcro one onto a board.  When she has ten bookworms lined up on the board, she can have a night to play with the Wii Sports or Wii Outdoor Challenge (We play Wii Fit every morning, so that one is not really a reward, but rather something to motivate her to be a little more active)…..I merely mentioned this chart to Vanessa the other day and she picked up a book and read it to me cover to cover without any crying or whining or complaining….!!!!

Honest Scrap

    Wooohooo!  My First Blog Award!  Thanks Bethany!!!    I met Bethany (The X-Mom) more than a year ago online…she has been a wonderful friend, travelling this journey with me!   Together we have organized our lives to make raising these terrific kids a little easier…we share ideas and reach out to other x-moms to do the same.  I’ve heard so many people say they lose friends because of their children’s special needs….and that may be true, but I’ve also gained a lot of friends for the same reasons…and these friends truly understand!

Now, there are some rules that go along with this award….

Choose a minimum of 7 blogs that you find brilliant in content or design.
Show the 7 winners’ names and links on your blog, and leave a comment informing them that they were prized with “Honest Scrap”. Well, there is no prize, but they can keep the nifty icon.
List at least ten honest things about yourself.

 

The 7 blogs….hmmm, I think Bethany covered most of the ones I frequent, lol….I will update this part soon!

Ten Honest things about myself:

1.  I HONESTLY don’t know what normal is anymore and feel intimidated by children who are considered “normal”….I have no idea how to talk to them! 

2. I have learned more from my children than I’ve learned from anybody!

3. I am happy to say that not once in my life have I ever made fun of a person with any kind of a disability, buut, it eats at me every day that as a teenager I turned down a dance with someone with an intellectual disability because my girlfriends were all giggling and making fun of him…If there was one day I could do over, it would be that one…I would dance proudly with that brilliantly-blue-eyed boy ! 

4.  I enjoy knitting

5.  I think the Wii Fit is the best investment I’ve ever made…and I should do a post about it !

6.  I am slowly having to admit that doing activities with all three children is difficult for me to handle.  I will not yet admit defeat…but some days I do feel defeated.

7.  I feel sorry for people who judge me, my parenting skills and my children…I feel sorry for them because they are close-minded and I know what a wonderful world it is to live in when  you open your mind…Look at what they are missing out on!!…but I don’t feel angry toward them…

8.  I love photography, and while I know that I would love a career in it, I am not confident I would ever be good enough to produce a product for someone else.

9.  I love bedtime….not because it is when the kids go to bed and I get time alone, but because it is the only time of the day when there are no expectations, no demands….I can read a story, put lotion on the kids, sing them a song and cuddle with them and they know I love them…there’s no error corrections or lessons to be taught or learned…its just a warm fuzzy…

10.  I like to have a good cry sometimes…its cleansing….and when I do it at home at night every so often I can get rid of the self-pity, of the feel-sorry-for-someone feelings, before I release it at an inappropriate time…and I like it even better when I can cry silently while snuggling with my hubby…I pretend to hide it from him that I am crying and he pretends to not notice, lol, but I know he does because he squeezes me a little tighter….I also think that when my children cry its a great bonding experience….well, a certain kind of cry…a hurt-feelings kind of cry…not the I didn’t-get-what-I-want kind of cry…lol

Follow-up on Transitions for Vanessa

Just a quick post to let you know that since my last journal entry that spoke about helping Vanessa through transitions, every transition home from school has been a good one!!!!!   So we have the key and the understanding!!!  We are all thrilled!!!  That took several years to figure out! What a relief!   I suspect she will still have difficulty with some transitions where environments are new to her, like summer camps should she decide to attend one next summer….but at least we are armed with the understanding of her particular trigger now and hopefully can guide her through !!!!

Adverse Reactions to Meds

Tuesday last week Pake threw up….but because the girls had thrown up a couple days prior to that I figured that a bug was just going through the kids and no worries…Wednesday Pake spent at home with me….no more vomiting and other than being tired, he seemed okay…….Thursday his therapist called and said he was non-responsive, almost “stoned” and not eating and not getting any of his “answers” correct during the therapy. …they would show him pictures and say “what is this?” and ordinarily he would have said frog and got it right, but said cow…he was confused to say the least….I picked him up and when I brought him home I noticed he wasn’t talking properly…his speech was slurred…and he wouldn’t eat his supper….and he seemed really anxious…wouldn’t accept comfort from me at all……I called the hospital…nobody would talk to me unless I brought him in..but my purpose for calling was simply to say that I was bringing him and was hoping to have someone meet me there that understood the problems already because I likely wouldn’t be heard if Pake was tantruming….and also to see if maybe we could have a hospital room where Pake could wait to be seen instead of in the busy waiting room with no doors to hold him in……even when I explained that Pake was aggressive and self-abusive and would not tolerate an unstructured hospital visit and very strong and unmanageable…still wouldn’t listen!    so I phoned telehealth Ontario….they wouldn’t let me talk…they kept interrupting me to remind me they only wanted yes or no answers…I got irate!!!!   “I can’t give you yes or no answers….I know you need to save time on the phone calls so if  you just shut up and listen to me this will go a lot faster!”   aaaaaanyway, I took him to the hospital, and as I suspected, I couldn’t get him in the doors.      so I phoned the pharmacist and asked if I should be continuing to give him the meds that night until I could talk to my own doctor?  he said no way…don’t take chances…skip it for the night….I did…I slept with Pake…I was scared of him stroking if this really was a reaction to the meds…..the next day he woke up with a rash and marks in the corner of his mouth like cold sores…I got on the internet and found measles acts this way…but he’s been immunized…I looked at all the possible side effects of the meds he’s on…and most of them are classic for what he’s experiencing….about 10 o’clock, he started to eat…insatiable actually….and he seemed himself…but by noon he became aggressive and self-abusive again…and by 2 he was entering delirium….like he didn’t know me or my parents when they came over!  he became highly anxious and shuffled around us to get away from us…stood in a corner and watched us and as soon as someone came close to him he would kick at us or scream, cry and drop to the floor….I had been calling my doctor all day trying to get hold of him…finally he called and said to take him off the Risperdal completely, get him to the hospital no matter what and he would phone in another prescription….so I called Alex and had him come home and go to the hospital with me…Mom and Dad left and took the girls with them for the whole weekend….all this time the therapists have been concerned about Pake (and his teachers at the school too)….so I had been keeping in touch with them….The therapy centre nominated one of the therapists to come to the hospital so they could give their views and expertise to the doctor as well….and just be there for Pake….I really have one hell of an incredible team !  makes me cry…I can’t believe that so many people would have that much room in their heart for another’s child !  and its so genuine!   they were offered me rides, support, help with the girls, gave me cell phone and home phone numbers, telling me they were staying home all weekend for me if I needed them!  really makes you believe in humanity !!! 

The hospital staff was able to get us a room quickly and Pake was docile and exhausted he had very little fight in him!!!  The doctor said that she was convinced it was a reaction to the meds because he had no fever and no excessive sweating….She also said that Pake is going to have to get rid of the meds in his system and it will be like an addict going through withdrawal….he will need lots of comfort…..but its hard to give comfort to someone with autism who can’t tolerate someone else’s touch…..so I talk softly to him, just about whatever I’m thinking about and when he appears that it would be okay for me to go near him, I give him my hand to play with my fingers and after a while he puts his head into my chest and I can rub his head and when his muscles relax a little more, I can rub his back…..but its like building up trust with a wild animal caught in a trap and severely wounded…..breaks my heart !   Funny thing is he still has an amazing connection to the dog and she doesn’t go too far from his side at all….He reaches out his hand to her and she licks it….and whenever he needs comfort she’s there whether I am or not…..and he even started touching her head…something I have never seen with all his sensory issues….

Saturday and Sunday his mouth was so swollen he could barely get food into his mouth….oh I should tell you too, the other thing I was concerned about when I dismissed measles, was meningitis….all the symptoms for it are here, plus meningitis can be caused by reactions to meds!!!!!    

My problem with connecting all of this to be an averse reaction to the meds is because he’s been on them for two weeks and only half-dose!  But when I spoke with the pharmacist the first night I attempted the hospital, he said that it would take about two weeks before you start seeing side effects…..

well so much for my perfect world !  I honestly thought Risperdal was the key to Pake’s comfort and all our happiness!   well, I guess we give the next one a shot !  the next one is clonodine…..    I know nothing about that one!  I’m scared as hell !

Meds…..they’re working so far….

The Intensive Behavioural Intervention Program that Pake goes to 24 hours a week called a conference with me a few weeks ago….Their data showed that Pake’s self abuse is preventing him from learning…it has accelerated….I was afraid that they were going to say the acceleration was because of the changes with the puppy, but we see such good things at home because of her….but thankfully their data shows this increasing long before we got the puppy….anyway, they have tried every possible behaviour strategy that they use with Pake and nothing has worked over the last year to reduce the self abuse….but at least he had still been progressing…until now…..They said they have been researching alternative methods and wanted to speak to me about them…..A Psychologist was present, as well as the clinical supervisor…..the first thing they mentioned (and no, this was not one of the alternative methods,) was Meds……I can’t even tell you how much relief it was to hear THEM suggest that…..I’ve been tossing around the idea myself, but it felt like a failure to try it….and, with him in a behavioural program, I figured it would be frowned upon…never did I think to talk to the program people about it !!!!   I just assumed they wouldn’t want me to……anyway, the first med they suggested was risperdol…..    I told them that yes, I would like to try that route, combined with the ongoing therapy and the other alternative methods which I talk about on another page (punishment/aversive therapy, and pairing)…..

We visited with our pediatrician who had decided not to deal with behavioural issues around meds….he is not a proponent…but he decided since knowing us, he would discuss the issue with me….He truly is a wonderful doctor…and I have not yet met another doctor who is as gentle with children as he is, or who can talk to a child the way he does!!!   aaaanyway, I think he was all set to persuade me NOT to consider behavioural meds…..but Pake gave him a good show in the office….and I told him how treacherous and disruptive it has been at home…the girls hiding in their bedrooms turning inside themselves, with their hands over their ears at times…its sad, really….

      He agreed to consult with the psychologist at the therapy centre Pake attends and between the two of them, this past Wednesday we they came up with a plan and a prescription…We were to start the meds (Risperdal, which is an anti-psychotic used primarily in schizophrenia, but in extremely small doses can be used to take the edge off of anxiety and reduce aggression and self-abuse) on Wednesday night…. one-quarter of a milligram is all I can give Pake each night..and we give it at night because it has a sedative quality to it, that way he can get used to the effects of the pill while he is sleeping…we are to record all behaviour for the next week, then decide whether we need to add one dose in the mornings….I have put Pake through activities and tasks that would have a high probability for self-abuse and aggression in the last few days since starting him on the meds and I am extremely happy to say its working!!!!!!!   He has still had two small bouts of self-abuse, but both were VERY quickly redirected by HIMself !!!!!   He even made it through one of Mallory’s 10-minute tantrums which he usually never makes it past 5 seconds!!!  and here’s the most amazing one:  Pake took Mallory’s balloon while I was in the bathroom…. Mallory’s shrill voicing, yelling “hey that’s mine” repeatedly did not phase him….I got to go pee in peace!!!  LOL….   aaaaaaand, as I came out of the bathroom I saw with my own eyes Pake give the balloon back to her !!!!!!   I just about fainted!  LOL

I can feel the change in his body….his muscles are not all tensed up when I come near him….I can hug him and he accepts me in his space and seems to be glad to do so….he sits on my knee without panic rising in his chest…..and best of all?   his personality is just as bright and energetic as he has ever been!   I am so pleased…..even just the fact that today he has been awake 6 and a half hours without screaming once, let alone his usual 50 times is amazing!!!!

 

        

How can I make it easier for you?

Vanessa has always NEEDED to test me and then others….its very methodical, but it is her way of learning….she will do things my way for a while, then she has to try it out other ways to make sure what I have told her is the best way…..or she will correct a behaviour at home, but try it out on my parents when I am not around to see if she gets the same reaction from them as she did from me….I am completely okay with that because when she sees that others do or say the same things I do, then she realizes that I’m not just being mean or authoritative……she has never been able to ask the questions she needs to or express herself enough to figure things out, so this is her way….it takes longer this way, but when she makes her conclusion, it is usually solid and she drops the behaviour for good……   I believe she developed this learning technique because of the mixed directions she got from her her father and I……Her father never supported anything I did or said in the home, and he gave Vanessa very conflicting ideas, and he behaved in unacceptable manners that she was not allowed to copy, like making faces behind my back or namecalling, belittling, making fun of people with disabilities, crossing personal boundaries, etc………so she developed her own way have to figure out which one of us was telling her the right thing…..again, I was okay with this because it made her realize fairly early on that her father was not a good role model ! 

But she has never put this methodology to work in the transitions between school and home, nor has she been able to express her difficulty or her responses during transitions…..This has always puzzled me….so I decided to help her put this method to work….I had other people try picking her up at school and bringing her home….the pickup was always good with other people….she never yelled and screamed at them, she never said mean things or threw her bookbag at them….for a while I found this very hurtful that it was only directed at me….but someone gave me a tape to watch of an Oprah show where she spoke with a young girl who had tourettes syndrome…. this young girl ranted and raved to her mother much the way Vanessa does with me, but also like Vanessa, she was very loving with her mother….loved her unconditionally….Oprah asked her why she treated her mother that way, but could control her outbursts in front of everyone else…she said, and I can’t quote exactly because this was a long time ago, but something along the lines of “I need to get it out and at the end of it, I know it is my mother who will still love me when it is all over.”  That very statement made me cry immediately and whenever I think about it, but it gets me through my every day…..and I do think of that girl every day ! “

But Vanessa has been testing other things with the transitions, I think…..I came up with a plan to give her happy faces on the calendar for every good pickup…and I explained what i expected from her in order for it to be a good pickup….I kept the expectations reasonable….for example, instead of saying no crying, i said crying was okay, if it was quiet,…..and for another example, if she didn’t feel like talking to me, that was okay, but she wasn’t to scream at me that she didn’t want to talk, she could say it quietly, but then I would expect her to talk to me at home whenever she was ready., etc…..    And every Friday night, if she had collected at least 3 happy faces that week, we could all have movie night, complete with popcorn……well the first week went well…she got 3 happy faces….the second week was even better…she got 4 happy faces….but the third week was terrible…she woke up Monday morning of that week and said “its going to be a bad pickup.”  and it was…..it was one of the worst !  I was angry to discover that she could simply control it this way, but then I gave her the benefit of the doubt and figured maybe she knew there was something planned at school that day that she was anxious about…..I asked a tonne of questions, but got nowhere….Tuesday, same thing….and when I asked her what was wrong?, she said “I don’t want happy faces on the calendar anymore!!!”   and true to her word, Wednesday, Thursday and Friday went the same way…..and on Friday, she said, “so, what’s going to happen tonight?”  and I said “well you sure as heck aren’t getting movie night tonight!”    The 4th week, she woke up on Monday and said “today, I am going to get a happy face”…..and she did…so on Tuesday I said, “hey I think you discovered the trick!  I think you finally realized that if you want it to be a good pickup, you can make it a good one.”    Every day that week, she got a happy face !!!  And we all got movie night…..!!!!  

 The fifth week, was another good week with one not-so-good pickup…..and that is the one I want to really write about here……The transitions home have always been difficult, but I suspected this year would be more so because of the crazy schedule we are keeping…Mallory only goes to school on Tuesdays and Thursdays and she gets picked up in the Kindergarten yard which is at the back of the school, fenced off from everyone else….Pake goes to school on these days too, but only for the mornings and he goes to the therapy centre in the afternoon…so, on those days Vanessa has to remember to go to the kindergarten yard where she will meet her sister and I can pick them both up (the only alternative way to do this was to either have Vanessa wait for me to get Mallory and then come and pick her up, which her patience would not tolerate, OR to have Vanessa leave class five minutes early so I could pick her up first….but Vanessa used to leave her class early last year to avoid the end-of-the-day-chaos but she decided that she wanted to leave at the same time as everyone else…I did not want to take that away from her)…..but on Friday afternoons, Pake is in school, so Vanessa needs to remember to go to the front of the school with Pake and his EA where they will all meet with me….but this schedule, as crazy at it is, gives Vanessa the “what’s next” answers she needs….AND it gives her something to focus on and feel like a big-girl…she is proud of herself and has never mistaken the schedule….But this one particular pickup during this last week, Monday, I went to the front of the school to meet Pake and Vanessa and Pake’s EA….Vanessa was not there yet, so we waited for her….she came running full tilt down the hall shouting at me, upset and complaining to anyone who would listen to her about what a terrible mother I was that I did not do as I said I would do.  She was so incredibly mouthy !   I made her apologize to the people she was very rude to and we left calmly.  Once outside I said, “Vanessa, I know that pickups are difficult for you,….what can I do to help make them better for you?”  This is not the first time I’ve asked this question, but it is the first time she was able to express the problem!!!    she said “you could wait until I get there before you come.  I’m supposed to get there before you do.”        Eureka!!!!  I now understand why some pickups go well, and some don’t !!!!!          As excited as I was, I still had to be level-headed and explain that this was not always possible…and on Tuesday morning, I re-iterated that I may get there before she does and I may not, but no matter what, it will be okay…..happy faces the rest of the week!  and last night, we had movie night!!!!

Camping Trip

Ahhhhhh!!!!!   We finally got in a camping trip before the year was out…..crisp and invigorating October camping!!!!   What beautiful fall colours….!!!  We drove out to Forillon National Park, 16 hour-drive….which is why Pake spent the vacation with his grandparents….He had a wonderful time there and they enjoyed him just as much ! I am so thankful.

Vanessa and Mallory not only saw their first mountain, but climbed it!!!!  I was so proud.  The girls had a few other firsts too….this was Mallory’s first fire….and her first roasted marshmallow….they both had their first s’more over the fire….Mallory’s first hot chocolate….their first dip in the ocean (fingers only….too cold for a swim)….and…..

 

 

 

 

 

 

their first waterfall…actually, we saw several…..we all could have just stayed all day at the one waterfall, we enjoyed it so much….We loved the sound, the clarity….the colours all around us, how peaceful we all felt…..

The girls had fun passing other tourists and trying to talk their language….The people in Quebec are all amazing people….what a talent to be bilingual !  We were so thankful that the people were so friendly and so willing to speak to us in English.  I have a great base knowledge of French and did quite well in French classes in highschool and was so anxious to speak the language, or at least try….but honestly, it took a lot of effort on my part to understand what was being said back to me….I wonder how I must have sounded to them?   I remember going through Quebec with Alex last year and the Quebecoise just had to look at us and instantly they started talking English!!!  We must have a look about us….LOL…. Mallory took it upon herself to learn how to ask for the bathroom, but she kept mixing up the order of the words….but no matter how she said it, it made her laugh so hard….and her laughter is so contagious…..est-ce que je peut olay (should have been alle, but couldn’t convince her of that) au toilet ?     too funny!!!      The whole vacation was spent with the girls asking me how to say certain words in french….I doubt they’ve remembered any of them, but it was fun just seeing how much I could remember, and it made them happy…..  

Vanessa is typically a very emotional girl who believes she cannot lift heavy things, or do any work that takes intricacy or detail….but drop her in the woods and she is all put-together, calm, happy and stress-free…..Fragile-X and Autism did not exist on our trip…..

Vanessa and Mallory were more than happy to sleep in the tent, even though it dropped to temperatures below freezing….and Vanessa found her “style” in quebec, LOL…..she liked her camping clothes so much she wants to wear them to school…..she decided she really likes the polar fleece, the hiking pants, and layering clothes!!!!  No, we didn’t buy clothes special for this trip, but they were in her closet at the back, never worn……now she wants to wear them all the time!!!!

A Rough couple of days

Last week, the therapy centre set up a meeting with me to discuss Pake’s escalating self-abuse and accompanying screaming.  We discussed a couple of options, one being meds….we all feel that we have tried and exhausted all the available positive behaviour therapy and that we need something more….I actually felt some relief when this was mentioned….but I’ve had some strong emotion because of the discussions around meds…..when Pake was first diagnosed, the doctors wanted me to seek out therapy..I said No way…I would do it myself…I would learn all I could and be the mom I always wanted to be….when I finally admitted I couldn’t do it, I invited the therapists in….the therapists suggested I also get daycare….I said No way..I am a stay-at-home Mom, I would do it myself….when I realized I couldn’t do it myself, I put Pake in daycare….then they said school…I said No Way, I will homeschool……and when I realized I couldn’t provide for all of his needs, I sent him to school….and now they are saying meds….      When someone gives me a compliment about what a wonderful mother I am, I feel guilty accepting the compliment…I’m not a wonderful mother…I’ve failed as a mother…the people that are helping Pake to become successful are the therapists, the daycare and the school staff……    and now, if my son goes on meds, I just couldn’t live with the compliments….there is nothing left for me to being a mom…..top that with the fact that lately I feel like I am merely a chauffeur, taking my kids to their various programs and juggling a schedule so that I make sure I can physically drive from one end of the city to the other for pick-ups and drop-offs at just the right times.    Sooooo by now you realize that sometimes I do actually sit on a selfish-pity-pot…and lately the ring on my butt is pretty red!!!  LOL

But honestly, I am looking forward to the meds….I’ve realized something else….For the sake of helping one child succeed without meds, I have been allowing him to disrupt all of our lives in an unacceptable way…..I’ve been trying to get everyone else in my family to conform and tolerate and accept, when what I should be doing is guiding the source of the discomfort in any way I can….and right now that is meds….I sure hope this will be life-changing for us.

Pake and I attended the pediatrician’s office on Friday to discuss meds….he does not endorse behavioural meds and was all set to talk me out of it, but with the data I provided from the centre, and the display Pake gave him in the waiting room, he decided meds would be the best avenue….he is going to speak with the therapy centre’s psychologist to discuss the best meds and get back to me with a prescription…   The appointment was exhausting, dealing with Pake’s anxieties and behaviour….his screaming is deafening….I couldn’t wait to get home….and at home, his anxiety didn’t die down….The next day was difficult too….    when Pake has a melt down, he goes limp to get out of my grasp, drops to the floor and starts kicking and thrashing about, screaming at the top of his lungs, red faced and vains popping !!!!  he smacks his face and bites his wrists…he reaches out with his kicks, so I know he is intentionally trying to kick me!!  If any part of my skin comes near his mouth he will bite me too….physically he is much stronger than any other seven year old I have ever met….    and I bet he had at least 20 of these melt-downs on Friday….Saturday was less in numbers, but certainly not in strength…..my belly hurts so bad from him kicking me….I realize I should have been behind him and I see where I went wrong with all my tactics….I have always tried not to restrain or carry on any of the chaos, but in public, there is too much danger not to intervene….  all I wanted was to end my day in Alex’s arms and a good cleansing cry…..and that is exactly what I did….

but today is a pool/pizza party for the autism buddy program….both Pake and Vanessa are part of this…I’ve been looking forward to it and even thought I might go in the pool too….surprisingly….but right now, I feel nothing but panic and I don’t want to step a foot out my door today….hard to believe this is coming from me….and I feel like I am disappointing the people who see me as such a strong woman, putting myself and my family out there just to be part of the world, of nature….but this is truth….I don’t lose strength too often, but I have certainly lost it over the last few days….

Imitation Skills

It rarely appears that Pake is ever paying attention.  Of course, I expect and understand that there is very little eye contact (although when he does give eye contact, it is beautiful and meaningful !) , but this seeming inattentiveness is more than just a lack of eye contact…. it’s noise making, it’s busy hands, it’s turning his back on the speaker or the activity….but sometimes I swear he really must have eyes in the back of his head…. his imitation skills are amazing!!!  he can dry dishes with the same little “routines” I use for drying a dish, a cup, a pot…. he can hold a pencil the correct way (although he does little more than scribbling)….and tonight, he twirled spaghetti on a fork like a pro!!!!   I was proud, but the teeniest little part of me was slightly disappointed… I always looked forward to watching him eat spaghetti….I thought it was so cute that he would pick it up in his fingers and wind it around the fork….LOL

This is a work in progress

Please note this is a work in progress…..I have written several pages which you can feel free to read, but some of them need editing or completing…..I hope to have this up and running and starting some regular posts within the next week or two, so please keep checking back…..