I think finally, we're getting back to our new normal!! The last 3 weeks has been more hectic than I had even expected, and to top it off we've had a couple drama incidents just add to add extra flavour.
I was supposed to be done work on October 31, however I have had to change my plans and am now juggling what I can for work hours while keeping the kids full-time. Why? I had to fire the babysitter and I'm just not going to look for another one. We've had to much trouble and stress over babysitters so it's time to just be done.
Here's the story:
Conner's bus picks him up from his babysitter's house anywhere between 8:05 to 8:10am. Normally, I have the kids there before 8, so Conner goes inside for a few minutes before the bus comes. On Tuesday, I arrived at just after 8, so I told Conner to stand at his pick-up spot and I let his sitter know he was outside when I took Robyn in. We didn't talk long because she was trying to keep quiet so her children didn't wake up.
Zoom forward 35 minutes. I get a call from the school that Conner had missed his bus, and that some stranger driving by had picked him up from the curb because he was crying and cold. She gave me a cell phone number to call. I immediately called to find out that the lady had actually returned Conner inside to the house - after waiting with him and walking back to her house to get a kleenex for his running nose. She admonished me for dressing my son so poorly and then I thanked her for her help. (I was in a bit of a panicked state of mind with worry for my boy) I left work and raced to the sitter's to find him inside, still very upset. I basically ripped the poor girl's face off when she started going on about the bus not picking him up. She couldn't understand why I was so upset that 1. she didn't know he had missed the bus 2. he had been crying all by himself outside and 3. she didn't immediately call me
I got Conner to school, thankfully and he had a pretty decent day considering. Phew. So many things could have happened, my stomach was in knots the rest of the day and all of the next; I feel it roll every time I think about how scared and alone he felt.
People have asked, well why didn't he just go to the house? And I can see their point, but it shows how very little other people know my son. Other children may have done that, and they may also have taken the mitts out of their pocket and put them on when they did get cold. But Conner 's mind wasn't looking for solutions - he was waiting for the bus! I know he'll be misunderstood alot - most people see a beautiful, smart, happy little boy and can't possibly fathom some of his challenges. For the most part I take that as a success; it means he's managing well! But it also reinforces why he needs me at home full-time. I may screw up, and I may not always understand the why's; no parent or caretaker is perfect. But when it comes down to it, Conner needs me to be his full-time support more than I need to work part-time.
Here's hoping for a calmer next week!
Showing posts with label sensory processing disorder. Show all posts
Showing posts with label sensory processing disorder. Show all posts
Thursday, October 23, 2008
Thursday, September 11, 2008
First Day of Kindergarten!
Conner's official first day of Kindergarten was today. He's had one 20 min orientation, one half day, and today was the first actual day. He'll be riding the bus, but I'm going to give my guy some time to adjust and learn the ropes first.
So... it went ok! The last glimpse I had of Conner as I left the room made me sad for him - his face showed his fear. He looked lost, confused and so unsure of himself. That's the part that's hard for me to handle - I have to let him find his feet, but what I really want to do is hold his hand and cheerlead him throughout his day. The teachers told me Conner did well when I went to pick him up. He hasn't looked into my face yet, after being home even for awhile, so I'm on alert... usually means things aren't ok inside of him.
One issue: choking kids on the slide. The teacher asked me if this is common and what I do for it. I told her quite honestly, yes he becomes over-aggressive and inappropriate and we have no idea what to do about it. He needs close monitoring when engaged in high activity play with other children. I don't know what happens, but he loses himself and starts hitting, pushing.. apparently choking other kids. It's partly why we pulled him from soccer. His OT suspects it's due to visual stiimulation overload. I have to think some more, but my only answer for the teacher is we don't put him in those situations because he can't handle himself...
So, some good, some bad... but overall we're home and no tears yet :) My guy's first day is over.
So... it went ok! The last glimpse I had of Conner as I left the room made me sad for him - his face showed his fear. He looked lost, confused and so unsure of himself. That's the part that's hard for me to handle - I have to let him find his feet, but what I really want to do is hold his hand and cheerlead him throughout his day. The teachers told me Conner did well when I went to pick him up. He hasn't looked into my face yet, after being home even for awhile, so I'm on alert... usually means things aren't ok inside of him.
One issue: choking kids on the slide. The teacher asked me if this is common and what I do for it. I told her quite honestly, yes he becomes over-aggressive and inappropriate and we have no idea what to do about it. He needs close monitoring when engaged in high activity play with other children. I don't know what happens, but he loses himself and starts hitting, pushing.. apparently choking other kids. It's partly why we pulled him from soccer. His OT suspects it's due to visual stiimulation overload. I have to think some more, but my only answer for the teacher is we don't put him in those situations because he can't handle himself...
So, some good, some bad... but overall we're home and no tears yet :) My guy's first day is over.
Positive Reinforcement Activity
One issue with which we struggle is Conner's attention seeking behaviours that more often than not tend to be mis-behaviours. Hitting, yelling, crying and temper tantrums - these occur with greater frequency when my attention is partly or wholly taken up by another task. Phone calls, for example, are prime for Conner to spin off into some crazy bouncing off the walls, ceiling and furniture tornado that turns off his ears and tunes out the world. Robyn tends to get hurt when this happens. So I end up with two upset kids. That's the background, yes we have work to do!
One of the main tools I use is pre-meditation and engage Conner in an activity before I have to leave the room or take my attention away. The same applies to Robyn, for consistency. I try my best to do this, as does Mark - but we're only human and you can't always plan for a 20 minute phone call. When speaking to my OT, she had a great suggestion to help reinforce Conner's good behaviour in a pretty simple way that should also help to raise his self esteem.
Every day, we choose a new colored piece of paper to put in an old picture frame I have. Every time we see him doing something nice or good, we give him a sticker to put on the paper. Some days, he has alot of stickers/stamps... other days not so many. At night, he puts the frame on the shelf by his bed, as a reminder of all the good things he did that day. It's also the first thing he sees in the morning to hopefully encourage him to fill up the new paper for the day.
It's a great activity - but it does take effort on our part to make it part of our routine. Conner has grown in leaps and bounds in the last three months, so it's hard to measure how each activity or strategy we're using actually makes a difference. I think overall, it's a great tool that has been helping our family as a whole be more positive in our feelings and interactions.
One of the main tools I use is pre-meditation and engage Conner in an activity before I have to leave the room or take my attention away. The same applies to Robyn, for consistency. I try my best to do this, as does Mark - but we're only human and you can't always plan for a 20 minute phone call. When speaking to my OT, she had a great suggestion to help reinforce Conner's good behaviour in a pretty simple way that should also help to raise his self esteem.
Every day, we choose a new colored piece of paper to put in an old picture frame I have. Every time we see him doing something nice or good, we give him a sticker to put on the paper. Some days, he has alot of stickers/stamps... other days not so many. At night, he puts the frame on the shelf by his bed, as a reminder of all the good things he did that day. It's also the first thing he sees in the morning to hopefully encourage him to fill up the new paper for the day.
It's a great activity - but it does take effort on our part to make it part of our routine. Conner has grown in leaps and bounds in the last three months, so it's hard to measure how each activity or strategy we're using actually makes a difference. I think overall, it's a great tool that has been helping our family as a whole be more positive in our feelings and interactions.
Sunday, September 7, 2008
Our Juggernaut
Last night Conner had another "episode". That's what we term his out of control, no cerebral thoughts periods - when lights on nobody's home - and all that's left is crashing, crying, yelling... you get the picture. I'm thankful now that we don't try to punish him out of it; we stopped treating it as simply bad behaviour when we came to realize that this isn't a choice for Conner, or something within his control. Now, I blame us as parents for allowing it to get to that point. Ok, so maybe that's being hard on us, but I do think our vigilance can save him from spinning out of control most of the time since we do know his triggers, mostly. I'll admit though, knowing doesn't always help - life is unpredictable!
Conner, his dad and sister went to Nana and Papa's for supper, for Papa's birthday. I stayed home because of a terrible stomach ache and headache that had me down and out most of yesterday afternoon. Conner apprently started getting wild on the trampoline, something I saw happen with our O.T. In sessions, he would use a body sock over his head to decrease the visual stimulation, which for Conner, is one major trigger. Another trigger is noise, and it is decidedly alot more noisy at Papa's then it is at home, to the point I battle headaches when I'm there! Usually I'm on high alert when we go to visit, just because I know from experience there are more triggers for Conner. So.. when Mark brought Conner home laden with sugar (yes, a huge trigger), after jumping on the trampoline for hours, then trapped in the vehicle with Dad and sis.. I took one look at the boy and his Dad and knew Conner was not well. Dad wasn't coping well either.
What scares me when I look at him when he's in this state, are his eyes: Blank, pupils dilated and darting. His pulse is racing, and his breathing is shallow. The little boy I love and adore is seemingly gone; as in not there. It hurts to see him like that, because deep down I know it must feel awful to feel that way.
Immediately we got him dressed for bed, and I dominated his bedtime routine with no wiggle room for any deviations. Once in bed, I mummy wrapped him (we tuck the comforter all around him, pinning his arms to his chest, around his legs and under his feet) and then placed a pillow on top of his chest. I sang him his bedtime song while leaning firmly on the pillow. Conner had started crashing down from his high upon entering bed, and the deep pressure did the rest of the work.
I don't like these episodes any more than I used to; they scare me every time. But, I don't feel as helpless as I did even 6 months ago, because we have learned some strategies to deal with them when they do arise. I'm so thankful they are occurring less than before (almost on a daily basis). Maybe it's education on our part, but I think it's also some maturation on Conner's. I have my fingers crossed for the latter.
I dream of the day that Conner can leave the stable environment that we maintain at home, go out into the relatively chaotic world (unaided), and maintain his self control, composure and above all, happiness.
Conner, his dad and sister went to Nana and Papa's for supper, for Papa's birthday. I stayed home because of a terrible stomach ache and headache that had me down and out most of yesterday afternoon. Conner apprently started getting wild on the trampoline, something I saw happen with our O.T. In sessions, he would use a body sock over his head to decrease the visual stimulation, which for Conner, is one major trigger. Another trigger is noise, and it is decidedly alot more noisy at Papa's then it is at home, to the point I battle headaches when I'm there! Usually I'm on high alert when we go to visit, just because I know from experience there are more triggers for Conner. So.. when Mark brought Conner home laden with sugar (yes, a huge trigger), after jumping on the trampoline for hours, then trapped in the vehicle with Dad and sis.. I took one look at the boy and his Dad and knew Conner was not well. Dad wasn't coping well either.
What scares me when I look at him when he's in this state, are his eyes: Blank, pupils dilated and darting. His pulse is racing, and his breathing is shallow. The little boy I love and adore is seemingly gone; as in not there. It hurts to see him like that, because deep down I know it must feel awful to feel that way.
Immediately we got him dressed for bed, and I dominated his bedtime routine with no wiggle room for any deviations. Once in bed, I mummy wrapped him (we tuck the comforter all around him, pinning his arms to his chest, around his legs and under his feet) and then placed a pillow on top of his chest. I sang him his bedtime song while leaning firmly on the pillow. Conner had started crashing down from his high upon entering bed, and the deep pressure did the rest of the work.
I don't like these episodes any more than I used to; they scare me every time. But, I don't feel as helpless as I did even 6 months ago, because we have learned some strategies to deal with them when they do arise. I'm so thankful they are occurring less than before (almost on a daily basis). Maybe it's education on our part, but I think it's also some maturation on Conner's. I have my fingers crossed for the latter.
I dream of the day that Conner can leave the stable environment that we maintain at home, go out into the relatively chaotic world (unaided), and maintain his self control, composure and above all, happiness.
Wednesday, August 27, 2008
Calming Activity - Bottle Buddies
One of the suggestions our O.T. made for Conner, was to make a bottle buddy as a calming activity. It's the same idea as a lava lamp - watching the gloops, plus being able to move them himself, should help him transition into quiet activity. For Conner it works amazingly well, and had I not seen it with my own eyes, I may not have believed that this works for him.
Mary had been pushing him harder one afternoon, to the point that he was crashing hard on everything in the room and was moving too fast; on the verge of losing control. Mary pointed out the bottle she had made, and he immediately lost interest in running and crashing, laid down on the floor, captivated by the sparkles in the bottle. I watched his body relax as he went into a state of total calm that sustained right through the 10 minute chat that Mary and I had regarding the session.
I've seen several variations, and if you google it, I suggest using wave bottles as search terms. I don't use mine in the home, but as a buddy in the car. Both children now have one that they decorated themselves and leave in the van. Instead of poking and prodding each other, they fidget with their bottle buddies. They do need reminders, and we do make sure to get excited about what they see inside their bottles. My husband and I noted an immediate change in our longer rides; there is alot less fighting or discontent. For us, that's a great improvement; it had become a chore just to drive to the store because of the fighting. The problems in the back seat felt out of our control because nothing we had been doing seemed to have a lasting effect.
The bottles are also great for heavy work activities, like bowling: Have the child set up the pins, knock them down, and then reset them up. We have been doing this outside with a soccer ball.
So, click the link above for your own ideas, and I've listed my own recipe/variation. I think the most important thing here was to make sure the kids were involved on every step - so that they feel the pride and ownership in their own bottle buddies.
Using empty water bottles (different sizes), I filled each with:
1/4 white corn syrup
1/4 baby oil (or olive oil)
1/2 water (leave some room at the top for displacement from beads etc)
added: sparkles, beads, shiny things -- I bought little packages from the dollar store and laid it all out for the kids to choose. I also added food coloring - but I controlled this as a couple drops goes a LONG way!
When everything is done - I lined the cap with silicone and screwed it back onto the bottle. Voila! Spill proof! So far prying fingers haven't tried to take the cap off - but I do watch closely.
Mary had been pushing him harder one afternoon, to the point that he was crashing hard on everything in the room and was moving too fast; on the verge of losing control. Mary pointed out the bottle she had made, and he immediately lost interest in running and crashing, laid down on the floor, captivated by the sparkles in the bottle. I watched his body relax as he went into a state of total calm that sustained right through the 10 minute chat that Mary and I had regarding the session.
I've seen several variations, and if you google it, I suggest using wave bottles as search terms. I don't use mine in the home, but as a buddy in the car. Both children now have one that they decorated themselves and leave in the van. Instead of poking and prodding each other, they fidget with their bottle buddies. They do need reminders, and we do make sure to get excited about what they see inside their bottles. My husband and I noted an immediate change in our longer rides; there is alot less fighting or discontent. For us, that's a great improvement; it had become a chore just to drive to the store because of the fighting. The problems in the back seat felt out of our control because nothing we had been doing seemed to have a lasting effect.
The bottles are also great for heavy work activities, like bowling: Have the child set up the pins, knock them down, and then reset them up. We have been doing this outside with a soccer ball.
So, click the link above for your own ideas, and I've listed my own recipe/variation. I think the most important thing here was to make sure the kids were involved on every step - so that they feel the pride and ownership in their own bottle buddies.
1/4 white corn syrup
1/4 baby oil (or olive oil)
1/2 water (leave some room at the top for displacement from beads etc)
added: sparkles, beads, shiny things -- I bought little packages from the dollar store and laid it all out for the kids to choose. I also added food coloring - but I controlled this as a couple drops goes a LONG way!
Tuesday, August 26, 2008
Kindergarten, The Beginning
I cannot believe how quickly time has passed. My first born is about to enter Kindergarten! While I’m reading stories from other mothers sharing in this life moment, I realize that perhaps I’m a bit less saddened by it. I suppose it may have to do with having sent Conner to pre-school for two years now, so we have that inaugural 1st day under our belts now.
I’m actually looking forward to this year with an equal measure each of trepidation and excitement. I feel like we’re finally in a good spot with Conner. Over the last 18 months, my husband and I have learned the why’s to Conner, or at least some of them. Now that we know why we are now able to address the what next. What Next has been my primary focus for the last 9 months. It’s been healthy for our family to reap the benefits of the education that we have sought and been receiving.
My worries about crossing into the education threshold have been waylaid greatly by the addition of the professionals that are now in our life. I know I can consult with them and ask for help to advocate for Conner in appropriate ways. With P.U.F., Conner will have an aide to help him and give him the one on one attention he requires for the things that he finds difficult: like activity transitions and story circles.
Now I just have to sit back, and wait. I have to let my little big man make his own steps, with the hope that when he stumbles, he'll be able to get back up. Now I have to learn how and when I can jump in and pick him up...
The hardest part for me, will be the transition from being the woman in his life – to having to share some of his heart with his teachers. It’s that road, as we travel it over the next decade and beyond, that will be the hard part for me.
I’m actually looking forward to this year with an equal measure each of trepidation and excitement. I feel like we’re finally in a good spot with Conner. Over the last 18 months, my husband and I have learned the why’s to Conner, or at least some of them. Now that we know why we are now able to address the what next. What Next has been my primary focus for the last 9 months. It’s been healthy for our family to reap the benefits of the education that we have sought and been receiving.
My worries about crossing into the education threshold have been waylaid greatly by the addition of the professionals that are now in our life. I know I can consult with them and ask for help to advocate for Conner in appropriate ways. With P.U.F., Conner will have an aide to help him and give him the one on one attention he requires for the things that he finds difficult: like activity transitions and story circles.
Now I just have to sit back, and wait. I have to let my little big man make his own steps, with the hope that when he stumbles, he'll be able to get back up. Now I have to learn how and when I can jump in and pick him up...
The hardest part for me, will be the transition from being the woman in his life – to having to share some of his heart with his teachers. It’s that road, as we travel it over the next decade and beyond, that will be the hard part for me.
Saturday, August 23, 2008
The O.T. 2 week Blitz
It's been a busy couple of weeks for me and the kids. Earlier in the year, we enrolled Conner in a program Mary Culshaw (Great Beyond Therapy) holds specifically tailored towards children with Sensory Processing Disorder. In this case, Mary's concentration was Kindergarten Readiness. Conner and I met daily with Mary in her clinic for 2 weeks (5 days, weekend, then 5 days). While the hour long drive there and back was inconvenient, every minute and dollar spent was very well worth it.
I was skeptical, to be honest, about the program and thinking that maybe we didn't need to invest so much money right now into a program like this, especially when Conner has been so relatively calm since return from our vacation. However, after Day Two, I realized the benefit that Conner was already receiving. I brought home a calm, happy and relaxed little boy Tuesday afternoon that stayed with us right up until it was time for bed. (We had a melt down complete with tears and screaming at that point) While I was making supper, he colored in his room. There was no fighting with Robyn; even when she pulled out her bag of tricks designed to send her big brother into hysterics. He sat through supper (without banging), ate it well and then returned to his coloring afterwards.
Not knowing my son, you would wonder what's so amazing about the above. I had to hide my emotions a bit, as I was almost overcome with happiness and relief to finally see our little guy, of all things: content. He wasn't thrashing, or jittering so much that he couldn't stay long enough to finish a picture. He had focus enough to plan out what he wanted to draw, and then explain it all to us when he was finished - including what he would do next. He had the self-control to refrain from screaming at or otherwise abusing Robyn when she entered the room - and was able to use his words calmly and effectively when she turned on the bug power. For as much growth Conner has done over the summer - this all in one evening was simply amazing for us to witness.
The best part? It continued throughout the week, (I held my breath) throughout the weekend... and with some bumps, the second week as well. Why? Mary has explained to me that we're seeing the effects of modulation for Conner. For him, that means alot of heavy work, some quiet/dark time in a place that he can stretch and push. Sure, there's more to it than that, but it's a place for us to start. I learned so much that I'm running over with information and ideas and strategies.
We have had some bad behaviour - he is five afterall. It's not a cure, and it wasn't meant to be. Conner will not change because of a few O.T visits... but I don't want him to change. I love my boy for who he is; we just need to keep working on teaching ourselves and him ways that he can communicate and interact with a world that is wired just a bit differently than him.
With a return to our former routine, perhaps I'll start posting more regularly! In two weeks, we start Kindergarten!
I was skeptical, to be honest, about the program and thinking that maybe we didn't need to invest so much money right now into a program like this, especially when Conner has been so relatively calm since return from our vacation. However, after Day Two, I realized the benefit that Conner was already receiving. I brought home a calm, happy and relaxed little boy Tuesday afternoon that stayed with us right up until it was time for bed. (We had a melt down complete with tears and screaming at that point) While I was making supper, he colored in his room. There was no fighting with Robyn; even when she pulled out her bag of tricks designed to send her big brother into hysterics. He sat through supper (without banging), ate it well and then returned to his coloring afterwards.
Not knowing my son, you would wonder what's so amazing about the above. I had to hide my emotions a bit, as I was almost overcome with happiness and relief to finally see our little guy, of all things: content. He wasn't thrashing, or jittering so much that he couldn't stay long enough to finish a picture. He had focus enough to plan out what he wanted to draw, and then explain it all to us when he was finished - including what he would do next. He had the self-control to refrain from screaming at or otherwise abusing Robyn when she entered the room - and was able to use his words calmly and effectively when she turned on the bug power. For as much growth Conner has done over the summer - this all in one evening was simply amazing for us to witness.
The best part? It continued throughout the week, (I held my breath) throughout the weekend... and with some bumps, the second week as well. Why? Mary has explained to me that we're seeing the effects of modulation for Conner. For him, that means alot of heavy work, some quiet/dark time in a place that he can stretch and push. Sure, there's more to it than that, but it's a place for us to start. I learned so much that I'm running over with information and ideas and strategies.
We have had some bad behaviour - he is five afterall. It's not a cure, and it wasn't meant to be. Conner will not change because of a few O.T visits... but I don't want him to change. I love my boy for who he is; we just need to keep working on teaching ourselves and him ways that he can communicate and interact with a world that is wired just a bit differently than him.
With a return to our former routine, perhaps I'll start posting more regularly! In two weeks, we start Kindergarten!
Sunday, August 10, 2008
PreHistoric Park, retold
On the way home from our BC vacation, we had an unexpected 9 hour stop in Valemount due to a car accident on the highway that caused it to shut down, both ways. As inconvenient as it was for us, I felt deeply for the familes involved in the crash.
After a long day of waiting and a bit of sight-seeing, we were back on the road to find that the highway wasn't completely open yet! To pass the time, I grabbed the video camera and asked the kids to perform. Normally, Conner is too shy and unsure of himself to speak when the camera comes on (even though he chatters endlessly when it's off!). To our surprise, Conner started reciting his version of his current favorite video, PreHistoric Park. He's watched it twice, the 4 episodes we have, and has personally elevated Nigel to the same status as Santa Claus, the Easter Bunny, and God (his explanation to his grandparents was that they are all friends and talk on the phone).
I'm a proud mama, can't help but to be; it's in our very nature! But this little video represents a huge achievement and an indication of the progress he's made in such a short time. In the minimum, it shows the potential my guy has to show his personality. It's a glimpse into the boy I know as my son, but struggles with invisible barriers, to show that side of his dynamic personality to the outside world.
After a long day of waiting and a bit of sight-seeing, we were back on the road to find that the highway wasn't completely open yet! To pass the time, I grabbed the video camera and asked the kids to perform. Normally, Conner is too shy and unsure of himself to speak when the camera comes on (even though he chatters endlessly when it's off!). To our surprise, Conner started reciting his version of his current favorite video, PreHistoric Park. He's watched it twice, the 4 episodes we have, and has personally elevated Nigel to the same status as Santa Claus, the Easter Bunny, and God (his explanation to his grandparents was that they are all friends and talk on the phone).
I'm a proud mama, can't help but to be; it's in our very nature! But this little video represents a huge achievement and an indication of the progress he's made in such a short time. In the minimum, it shows the potential my guy has to show his personality. It's a glimpse into the boy I know as my son, but struggles with invisible barriers, to show that side of his dynamic personality to the outside world.
Monday, June 30, 2008
Take a Deep Breath and Count (Part 2)
In early December, Conner was diagnosed (potentially) with Sensory Processing Disorder (Part 1 of Conner's Journey). In addition to SPD, the doctor noted compulsion/anxiety disorder. Thus began our journey. The first things on our list: referral to mental health services for the compulsion/anxiety.
We were immediately received for an initial intake upon the completion thereof I was informed that because of his age (he was still 4) there were no services available for him. The system does not recognize anxiety or other related disorders in children under 6, therefore there is no funding or programming targeted for them. We were told to come back once Conner was in school. I took it all in, gathered up the kids and went home.
By the time Mark got home, I was crying. Not knowing what this meant, and feeling overwhelmed about navigating us successfully through “the system” was a lot of pressure that I took on myself. I knew I had to be strong for my son, but I wondered whether I would be able. So I started doing what I could and asking around, first to people I knew, and then branched out to anyone who might know anything on the subject.
Upon consultation with his ECS teacher, I was able to get my hands on some good reading resources. I spent the next couple of weeks researching SPD and related developmental disorders and helping Mark learn about it as well. Come January, we took Conner to his EEG. He behaved so well that he was rewarded with any toy of his choosing from Toys R Us. If you know Conner, you already know what he chose; a giant dinosaur. This time, a long neck.
In February, the occupational therapist assigned to him through the central public referrals contacted us and arranged to observe and assess him at school. As chance would have it, Conner had a great day at school. This, at that point in the school year, was the exception rather than the norm for Conner to manage transitions and activities without tantrums and crying. He even participated in social play with other children without being prodded. This was something to celebrate! The report reflected Conner’s behaviour on this one particular day, and while she acknowledged the background and history, her assessment was that Conner had no significant delays or problems. She suggested some behaviour strategies to me and some parenting tips and followed up by phone once.
This may have been the end of the road were it not for Conner’s amazing teacher. She believed quite strongly that he would benefit from the attention and help he would receive from an aide. She embarked on a task to help Conner receive P.U.F (Hallejullah! Funding for Conner) for that purpose. She arranged for another assessment, this time by a family and child psychologist and therapist. While the report had some similar notes to the first one done, the second assessment gave us a more thorough examination and follow-up, including two pages of suggestions and tips to help Conner. Using that report, along with her own notes, his teacher was able to attain funding for P.U.F.
Yippeee!!! In the same week, Conner was accepted by a private Occupational Therapist, Mary Culshaw, to her clinic in August. The clinic will specifically target skills and functions Conner will need to be able to carry out well to help him succeed in Kindergarten. It’s not cheap, nor is it very convenient but we are thrilled and looking forward to participating.
The next chapter: Conner’s pediatric follow-up and saying no to drugs
We were immediately received for an initial intake upon the completion thereof I was informed that because of his age (he was still 4) there were no services available for him. The system does not recognize anxiety or other related disorders in children under 6, therefore there is no funding or programming targeted for them. We were told to come back once Conner was in school. I took it all in, gathered up the kids and went home.
By the time Mark got home, I was crying. Not knowing what this meant, and feeling overwhelmed about navigating us successfully through “the system” was a lot of pressure that I took on myself. I knew I had to be strong for my son, but I wondered whether I would be able. So I started doing what I could and asking around, first to people I knew, and then branched out to anyone who might know anything on the subject.
Upon consultation with his ECS teacher, I was able to get my hands on some good reading resources. I spent the next couple of weeks researching SPD and related developmental disorders and helping Mark learn about it as well. Come January, we took Conner to his EEG. He behaved so well that he was rewarded with any toy of his choosing from Toys R Us. If you know Conner, you already know what he chose; a giant dinosaur. This time, a long neck.
In February, the occupational therapist assigned to him through the central public referrals contacted us and arranged to observe and assess him at school. As chance would have it, Conner had a great day at school. This, at that point in the school year, was the exception rather than the norm for Conner to manage transitions and activities without tantrums and crying. He even participated in social play with other children without being prodded. This was something to celebrate! The report reflected Conner’s behaviour on this one particular day, and while she acknowledged the background and history, her assessment was that Conner had no significant delays or problems. She suggested some behaviour strategies to me and some parenting tips and followed up by phone once.
This may have been the end of the road were it not for Conner’s amazing teacher. She believed quite strongly that he would benefit from the attention and help he would receive from an aide. She embarked on a task to help Conner receive P.U.F (Hallejullah! Funding for Conner) for that purpose. She arranged for another assessment, this time by a family and child psychologist and therapist. While the report had some similar notes to the first one done, the second assessment gave us a more thorough examination and follow-up, including two pages of suggestions and tips to help Conner. Using that report, along with her own notes, his teacher was able to attain funding for P.U.F.
Yippeee!!! In the same week, Conner was accepted by a private Occupational Therapist, Mary Culshaw, to her clinic in August. The clinic will specifically target skills and functions Conner will need to be able to carry out well to help him succeed in Kindergarten. It’s not cheap, nor is it very convenient but we are thrilled and looking forward to participating.
The next chapter: Conner’s pediatric follow-up and saying no to drugs
Friday, June 13, 2008
Hallelujah! Funding for Conner
Conner has been approved for Program Unit Funding (P.U.F.)! The short explanation - this means that he will have an aide in the classroom specifically to help him. The long explanation, well read the handbook! Either way, it's a reason to celebrate.
Through extensive efforts by his ECS teacher, Erinn Gallagher and some caring professionals, Conner will be able to start Kindergarten with some special attention with the hope and plan that it will help him adjust and transition. My personal hope is that the intervention now will give him the opportunity to continue to blossom into a well adjusted boy.
We have some hard work ahead of us, and regular appointments with Occupational Therapists and potentially a child psychologist, but these are all successes! Conner will receive some of the best treatments we have access to so that he has a the best chance of achieving "normal". I don't care about what any standards say, but I look forward to the day that my heart doesn't hurt for our guy when he struggles over some of the simple things that we all take for granted as being second nature.
P.U.F. is one huge step along that adventure!
Through extensive efforts by his ECS teacher, Erinn Gallagher and some caring professionals, Conner will be able to start Kindergarten with some special attention with the hope and plan that it will help him adjust and transition. My personal hope is that the intervention now will give him the opportunity to continue to blossom into a well adjusted boy.
We have some hard work ahead of us, and regular appointments with Occupational Therapists and potentially a child psychologist, but these are all successes! Conner will receive some of the best treatments we have access to so that he has a the best chance of achieving "normal". I don't care about what any standards say, but I look forward to the day that my heart doesn't hurt for our guy when he struggles over some of the simple things that we all take for granted as being second nature.
P.U.F. is one huge step along that adventure!
Friday, June 6, 2008
Take a Deep Breath and Count (Part 1)
From the day that he was born, our son Conner has never followed the book. I threw "the book" out when he was 4 1/2 months old and started crawling. He pulled himself up at 5 months, and was walking by 6. In some of my online parenting communities I've had to actually pull out the photos as proof that my guy achieved these milestones at such a young age. When our super intelligent and very advanced little boy (don't all first time parents think that?) started lining up his toys in stick straight lines, or categorizing them by color, or shape, size and type(sometimes simultaneously) we were very proud. I wouldn't admit to it back then, but I did wonder if he was a tad too focussed. But everyone was so proud and happy, I dismissed my quiet wonderings as to being a new mom.
Everyone talks about their toddlers being busy, and I told myself that all Moms felt theirs was the busiest. But when I watched other little ones, and talked to other Moms, I realized that Conner did require alot more energy to keep up with than other children. There were other little things; like his inability to wear anything with a tag, his food tolerance for uncooked vegetables or crunchy things only, or how every night we started in the rocking chair with me holding him as firmly as possible so that he would stay in one place long enough to fall asleep an hour later that all together, added up to at least a very challenging and sometimes frustrating job as a parent.
Then the terrible twos hit, we thought, a bit early. Tantrums, crying, irratibility... we were prepared for this but were surprised when it came a bit early at 16 months. Oh well, he'd hit other milestones early. I don't know when it started to become louder, but that voice inside became more insistent that something was off about the time we discovered we were pregnant with our second child. Throughout the next few months, Conner increasingly became more difficult to manage. At his yearly exam, the doctor noted that she could not understand Conner. We had told ourselves he simply wasn't interested when he stopped talking a few months earlier. His tantrums, becoming more frequent and lasting longer were due to frustration at not being able to communicate, we thought. Speech assessments and then speech therapy followed. Thankfully he responded well, and enjoyed the one on one attention that he got. His sister had been born during this time, colicky for the first couple of months and very demanding of my time; her arrival was very difficult for Conner. I had to watch him very closely and didn't trust him around the baby as he deliberately tried to hurt her when he thought no one was watching.
As time passed I took on more guilt. We had been consistent. We had sought advice from everyone we knew, and yet we felt totally lost. Our child was healthy and we saw days that were bright, or on the "bad" days, glimpses of the guy we knew was there, so really we couldn't complain; he was healthy after all. Yet, I was afraid to even go to the store because I simply couldn't manage. Everything seemed so difficult, we were frustrated so much of the time to the point we both would break down and cry at the end of the day - we MUST be doing something wrong. Even though there are two of us, I felt like a failure as a mother.
Our beautiful little boy was spending more time in time out than he was playing, and increasingly he was withdrawing from us and the world around him that I was scared. Autism, that bad ugly word that no one really understands, loomed in my mind. Finally, I sought a consult to a pediatrician.
That day in December 2007 was the first time I had ever heard the words Sensory Perception Disorder (SPD), so foreign was it to me I had to have the doctor write it down so I wouldn't forget it. While it was a relief that autism had been ruled out (though he does exhibit autistic traits) we suddenly had a bunch of reading and learning to do. It was intimidating. But even while sitting in the pediatrician's office, a transformation happened inside me that I think started us as a family on the next step of Conner's Journey; I realized we weren't total failures as parents! From that day on I started to repeat (inside my head of course) "It is ok to be frustrated, he is a challenging child." With that out of the way, we were more able to focus on what was most important: Conner.
So began our journey that I plan to diarize here, as much for myself as for anyone who might read it. I can't promise regularity or perfect organization, but it will be an account that is honest and true as to how SPD affects my son and my family.
Everyone talks about their toddlers being busy, and I told myself that all Moms felt theirs was the busiest. But when I watched other little ones, and talked to other Moms, I realized that Conner did require alot more energy to keep up with than other children. There were other little things; like his inability to wear anything with a tag, his food tolerance for uncooked vegetables or crunchy things only, or how every night we started in the rocking chair with me holding him as firmly as possible so that he would stay in one place long enough to fall asleep an hour later that all together, added up to at least a very challenging and sometimes frustrating job as a parent.
Then the terrible twos hit, we thought, a bit early. Tantrums, crying, irratibility... we were prepared for this but were surprised when it came a bit early at 16 months. Oh well, he'd hit other milestones early. I don't know when it started to become louder, but that voice inside became more insistent that something was off about the time we discovered we were pregnant with our second child. Throughout the next few months, Conner increasingly became more difficult to manage. At his yearly exam, the doctor noted that she could not understand Conner. We had told ourselves he simply wasn't interested when he stopped talking a few months earlier. His tantrums, becoming more frequent and lasting longer were due to frustration at not being able to communicate, we thought. Speech assessments and then speech therapy followed. Thankfully he responded well, and enjoyed the one on one attention that he got. His sister had been born during this time, colicky for the first couple of months and very demanding of my time; her arrival was very difficult for Conner. I had to watch him very closely and didn't trust him around the baby as he deliberately tried to hurt her when he thought no one was watching.
As time passed I took on more guilt. We had been consistent. We had sought advice from everyone we knew, and yet we felt totally lost. Our child was healthy and we saw days that were bright, or on the "bad" days, glimpses of the guy we knew was there, so really we couldn't complain; he was healthy after all. Yet, I was afraid to even go to the store because I simply couldn't manage. Everything seemed so difficult, we were frustrated so much of the time to the point we both would break down and cry at the end of the day - we MUST be doing something wrong. Even though there are two of us, I felt like a failure as a mother.
Our beautiful little boy was spending more time in time out than he was playing, and increasingly he was withdrawing from us and the world around him that I was scared. Autism, that bad ugly word that no one really understands, loomed in my mind. Finally, I sought a consult to a pediatrician.
That day in December 2007 was the first time I had ever heard the words Sensory Perception Disorder (SPD), so foreign was it to me I had to have the doctor write it down so I wouldn't forget it. While it was a relief that autism had been ruled out (though he does exhibit autistic traits) we suddenly had a bunch of reading and learning to do. It was intimidating. But even while sitting in the pediatrician's office, a transformation happened inside me that I think started us as a family on the next step of Conner's Journey; I realized we weren't total failures as parents! From that day on I started to repeat (inside my head of course) "It is ok to be frustrated, he is a challenging child." With that out of the way, we were more able to focus on what was most important: Conner.
So began our journey that I plan to diarize here, as much for myself as for anyone who might read it. I can't promise regularity or perfect organization, but it will be an account that is honest and true as to how SPD affects my son and my family.
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