It's the first day of school tomorrow for Jake. We're excited but also very apprehensive about him going. He can't really communicate with us so we don't know if understands or appreciates the change that is about to take place. He'll be going for just a couple of days a week to start with so as to ease him in very gently.
We are so eager for Jake to enjoy his time at school and for it to be a success.
Monday, September 7, 2009
Monday, August 31, 2009
Answering the phone
When I started this blog about Jake I thought that it would be a good exercise to record the days that we have with Jake so that I could try and give some idea of what it can be like to have an autistic child. That sounds terrible. It sounds like I could be writing about a badly behaved pet and I'm in actual fact writing about our dearly loved son with out whom we'd be lost. I mean that.
Despite the worries and the stress that can be associated with our situation I often think about what it must be like from Jake's perspective. Does he feel frustrated by not being able to communicate with us very clearly? There's no doubt that when he goes into what we call his "melt-downs" it's because he is very unhappy about something and NOT because he is being naughty. Something is clearly wrong in those situations and it can be so difficult to understand what it is that is actually wrong. Does he have a headache? Does he feel sick with a tummy upset? Is he constipated? Has he a sore throat? Does he just feel unhappy and doesn't know how to fix it? Does he want a particular food and cannot explain that to us? From his perspective it must be so very hard.
We're very blessed to have such a beautiful boy in Jake along with his sister and my other children. I don't want it to appear that I am in any way complaining about the situation here. However hard it sometimes feels for us it can't be as hard as it is for Jake.
One of the things I've noticed about our life now is our increasing reluctance to always answer the phone. We now choose more carefully depending on how things are in the house. Yesterday I was finishing up in the shower while N. was feeding Jake with a bowl of cereal. Getting Jake to eat cereal with milk included is a rare feat indeed and when N. was half way through the process the telephone rang. I wasn't able to get to it and no way was N. about to interrupt feeding Jake as the slightest interval would have probably made Jake lose interest.
Unfortunately timing has to be perfect in our household these days to not only answer the phone but feel confident that we'll be focused enough to hold down a meaningful conversation.
Despite the worries and the stress that can be associated with our situation I often think about what it must be like from Jake's perspective. Does he feel frustrated by not being able to communicate with us very clearly? There's no doubt that when he goes into what we call his "melt-downs" it's because he is very unhappy about something and NOT because he is being naughty. Something is clearly wrong in those situations and it can be so difficult to understand what it is that is actually wrong. Does he have a headache? Does he feel sick with a tummy upset? Is he constipated? Has he a sore throat? Does he just feel unhappy and doesn't know how to fix it? Does he want a particular food and cannot explain that to us? From his perspective it must be so very hard.
We're very blessed to have such a beautiful boy in Jake along with his sister and my other children. I don't want it to appear that I am in any way complaining about the situation here. However hard it sometimes feels for us it can't be as hard as it is for Jake.
One of the things I've noticed about our life now is our increasing reluctance to always answer the phone. We now choose more carefully depending on how things are in the house. Yesterday I was finishing up in the shower while N. was feeding Jake with a bowl of cereal. Getting Jake to eat cereal with milk included is a rare feat indeed and when N. was half way through the process the telephone rang. I wasn't able to get to it and no way was N. about to interrupt feeding Jake as the slightest interval would have probably made Jake lose interest.
Unfortunately timing has to be perfect in our household these days to not only answer the phone but feel confident that we'll be focused enough to hold down a meaningful conversation.
Wednesday, August 19, 2009
Radio Presenter Ken Bruce writes about his autistic son
There's an excellent article that was on the Mail Online website (A british newspaper) by a radio presenter who would certainly be well known to the UK population. He has a seven year old autistic son and so many of the things that he describes are the same as our experience of Jake.
He writes so well in this article that I can't strongly enough that it is a must-read for anyone that has an interest in autism. The article canh be found here. Go there now.
He writes so well in this article that I can't strongly enough that it is a must-read for anyone that has an interest in autism. The article canh be found here. Go there now.
Monday, August 10, 2009
A buggy for our autistic son
Ooops, I've let this blog slip a little recently. Actually a lot since it's a month since I last posted anything about Jake.
Jake is fine along with the rest of us although the last few weeks have been typical of the kind of days (and nights!) that we have with Jake. Some good and some not so good although rarely very bad.
This morning he was awake before 4.30 am and so later in the day things will get to be pretty tense because his mood might be very uptight and difficult to calm but we'll see. He'll probably take a nap this afternoon and with some luck that will tide him over to the evening and bedtime.
We've been wondering about whether we should get a big child buggy like some other special needs or disabled children have. Jake is a very difficult boy to walk anywhere with as he simply doesn't want to walk. We don't have any reason to think that there's a physical reason for his reluctance but quite simply once we start to walk around a store or anywhere he demands to be picked up and if he isn't he will sink to the floor. It really takes it's toll on us and makes us think twice before going anywhere.
Some will look on and say that we need to be tough on him but we've tried that and I refuse to start smacking the boy because he collapses to the ground even if it is a tantrum. With Jake having no communication skills at all we are always having to guess his needs and also guess at what he understands.
So as a step in trying to get some kind of normal life back for us we're thinking of maybe acquiring a buggy suitable for his size. I guess we still aren't quite sure yet but it's becoming a more distinct possibility although a reluctant choice to have to make.
Jake is fine along with the rest of us although the last few weeks have been typical of the kind of days (and nights!) that we have with Jake. Some good and some not so good although rarely very bad.
This morning he was awake before 4.30 am and so later in the day things will get to be pretty tense because his mood might be very uptight and difficult to calm but we'll see. He'll probably take a nap this afternoon and with some luck that will tide him over to the evening and bedtime.
We've been wondering about whether we should get a big child buggy like some other special needs or disabled children have. Jake is a very difficult boy to walk anywhere with as he simply doesn't want to walk. We don't have any reason to think that there's a physical reason for his reluctance but quite simply once we start to walk around a store or anywhere he demands to be picked up and if he isn't he will sink to the floor. It really takes it's toll on us and makes us think twice before going anywhere.
Some will look on and say that we need to be tough on him but we've tried that and I refuse to start smacking the boy because he collapses to the ground even if it is a tantrum. With Jake having no communication skills at all we are always having to guess his needs and also guess at what he understands.
So as a step in trying to get some kind of normal life back for us we're thinking of maybe acquiring a buggy suitable for his size. I guess we still aren't quite sure yet but it's becoming a more distinct possibility although a reluctant choice to have to make.
Friday, July 10, 2009
A nice sunny day
Today was a nice sunny day and we've not had too many of those recently. Although we are well into July we've had too much rain and not enough bright sunny days like today.
So there was no daycare for Jake today and therefore no rush to get him out of bed in order to get him to eat breakfast within a certain period of time. Instead I heard him start to move at around at 8.30 am and I just let him carry on in this manner as he gradually got more and more vocal and therefore fully awake ready for the new day.
At 9am I went up to see him and we played on the bed for a few minutes. He was full of smiles. After a while I brought him downstairs, gave him a wash and sat him at the table for breakfast. He ate a complete bowl of bran flakes, drank orange juice but declined any toast. He was very firm about declining the toast but very good at attempting to use a spoon to feed himself the cereal.
He was in a good mood this morning and at around 10.30am I got out the paddling pool for Jake and A. to play in. Along with lots of suncream they enjoyed the water for the best part of a couple of hours. Unless Jake is in a very bad mood water is always one of the most enjoyable things for him to play with.
After lunch he went with N. for a speech therapy session and then came home to play in the garden some more. I think that the sun tired out both him and his sister because although I was out at work N. told me that both of them had been tired and a bit grumpy this evening. Jake settled down to sleep earlier than normal tonight so I'm worrying that he may wake up during the night.
A. got us up last night at around 2am and although she settled back down relatively quickly we are always so anxious that she doesn't end up waking Jake because we know that he just won't go back to sleep once he is disturbed and that normally means that we won't either.
So there was no daycare for Jake today and therefore no rush to get him out of bed in order to get him to eat breakfast within a certain period of time. Instead I heard him start to move at around at 8.30 am and I just let him carry on in this manner as he gradually got more and more vocal and therefore fully awake ready for the new day.
At 9am I went up to see him and we played on the bed for a few minutes. He was full of smiles. After a while I brought him downstairs, gave him a wash and sat him at the table for breakfast. He ate a complete bowl of bran flakes, drank orange juice but declined any toast. He was very firm about declining the toast but very good at attempting to use a spoon to feed himself the cereal.
He was in a good mood this morning and at around 10.30am I got out the paddling pool for Jake and A. to play in. Along with lots of suncream they enjoyed the water for the best part of a couple of hours. Unless Jake is in a very bad mood water is always one of the most enjoyable things for him to play with.
After lunch he went with N. for a speech therapy session and then came home to play in the garden some more. I think that the sun tired out both him and his sister because although I was out at work N. told me that both of them had been tired and a bit grumpy this evening. Jake settled down to sleep earlier than normal tonight so I'm worrying that he may wake up during the night.
A. got us up last night at around 2am and although she settled back down relatively quickly we are always so anxious that she doesn't end up waking Jake because we know that he just won't go back to sleep once he is disturbed and that normally means that we won't either.
Tuesday, July 7, 2009
Jake practising with a spoon
The last few days since I posted have been quite good with Jake. After having gone through a period of where he seems to have been permanently unhappy he has moved on to a more contented stage.
His latest thing is to loiter in the kitchen and harass N. by constantly raiding the kitchen draws. He has a liking for some of the utensils and it's meant having to remove to a higher level some of the more dangerous ones. Things that have sharp corners or points on them. We've experimented in the past with child proof locks on the draws but nothing has really worked. They've either been so effective as to stop everybody from getting in or no good whatsoever.
The other difficulty we've faced in having an autistic child is the effect it's had on the upbringing of Jake's younger sister. She was born in 2006.
A. has a strong personality and in order to keep the house quiet at times (her tantrums can upset Jake and cause him to go into melt-down) we're inclined to give in to her far more than we should and she has started to really take advantage of this to get her way. The whole situation is becoming more stress-filled than I could ever have imagined and it's true that it leaves me wiped out and exhausted at times.
Anyway Jake has had a good day today including his time at daycare. He was able to be waked at a reasonable hour and actually ate breakfast before we left with his spoon skills increasing. It's always a thrill to see that although it depends very much on his motivation at the time as to whether he tries or not. He also ate a sandwich at daycare today which is something he never does at home.
His latest thing is to loiter in the kitchen and harass N. by constantly raiding the kitchen draws. He has a liking for some of the utensils and it's meant having to remove to a higher level some of the more dangerous ones. Things that have sharp corners or points on them. We've experimented in the past with child proof locks on the draws but nothing has really worked. They've either been so effective as to stop everybody from getting in or no good whatsoever.
The other difficulty we've faced in having an autistic child is the effect it's had on the upbringing of Jake's younger sister. She was born in 2006.
A. has a strong personality and in order to keep the house quiet at times (her tantrums can upset Jake and cause him to go into melt-down) we're inclined to give in to her far more than we should and she has started to really take advantage of this to get her way. The whole situation is becoming more stress-filled than I could ever have imagined and it's true that it leaves me wiped out and exhausted at times.
Anyway Jake has had a good day today including his time at daycare. He was able to be waked at a reasonable hour and actually ate breakfast before we left with his spoon skills increasing. It's always a thrill to see that although it depends very much on his motivation at the time as to whether he tries or not. He also ate a sandwich at daycare today which is something he never does at home.
Friday, July 3, 2009
Jake Enjoying Water
Yesterday was a full day for Jake. He had daycare in the morning and I had a really hard time trying to get him to wake up. He was no doubt very tired from the previous morning when he'd been awake from 3am so he was playing catch up. I finally roused him from his deep slumbers but I had to call the daycare centre and let them know that we were going to be late.
He was, of course not at all interested in breakfast because he never is first thing in the morning and thats what makes it all so difficult when we are trying to run to a schedule. In the end, to my shame he accepted a cookie and after getting dressed we were on our way but about twenty minutes late.
He had a good time at daycare by all reports. He'd been tired but mellow in attitude so that meant that he was co-operative and that's always a good thing! He'd eaten well and had had three portions of Shepherds Pie topped with cheese and he's even been assigned a job each day which is to help push one of the dinner carts. He's a big strong lad so an easy task for him no doubt.
In the afternoon he and A. played in a pool in the garden. It's an inflatable pool that has provision for a hose to be fixed to it so that the water sprinkles nicely into the pool. Jake, being a boy that is always looking for a sensory fix just loves to push his mouth on where the water is pouring through. I don't think he drinks too much but that he likes to feel the water spurting into his mouth. He uses his mouth a lot to get extra sensory sensations.
So the pool activity as always was a great success and came to an end as the rain closed in and the sun went away as has been typical of the weather for the summer so far this year.
After supper I took Jake for an hour's walk in his wagon in some light rain and when he went to bed at 8pm he was out by around 8.45pm. That's always a bit of a worrying development because if he goes to sleep early sometimes he doesn't sleep through the night. But he did this time and he so far has been in a good mood this morning. If he's in a good mood then so am I!
He was, of course not at all interested in breakfast because he never is first thing in the morning and thats what makes it all so difficult when we are trying to run to a schedule. In the end, to my shame he accepted a cookie and after getting dressed we were on our way but about twenty minutes late.
He had a good time at daycare by all reports. He'd been tired but mellow in attitude so that meant that he was co-operative and that's always a good thing! He'd eaten well and had had three portions of Shepherds Pie topped with cheese and he's even been assigned a job each day which is to help push one of the dinner carts. He's a big strong lad so an easy task for him no doubt.
In the afternoon he and A. played in a pool in the garden. It's an inflatable pool that has provision for a hose to be fixed to it so that the water sprinkles nicely into the pool. Jake, being a boy that is always looking for a sensory fix just loves to push his mouth on where the water is pouring through. I don't think he drinks too much but that he likes to feel the water spurting into his mouth. He uses his mouth a lot to get extra sensory sensations.
So the pool activity as always was a great success and came to an end as the rain closed in and the sun went away as has been typical of the weather for the summer so far this year.
After supper I took Jake for an hour's walk in his wagon in some light rain and when he went to bed at 8pm he was out by around 8.45pm. That's always a bit of a worrying development because if he goes to sleep early sometimes he doesn't sleep through the night. But he did this time and he so far has been in a good mood this morning. If he's in a good mood then so am I!
Wednesday, July 1, 2009
Canada Day
It was the 1st of July today and thus it was Canada Day. Jake decided that this was worthy of him waking up at 3am and deciding not to going back to sleep. He banged around in his room, yelled out, screamed a little and the rest of us tried to sleep through it. When Jake wakes early like this he normally is in a good mood so his shouting and screaming is quite cheerful but that doesn't really help the rest of us trying to sleep.
N. got up around 5.30am and took him down stairs as he was getting even more vocal. I got up around 7.15am with all kinds of aches and pains and really felt quite unwell. I'd have liked it if N. could have gone back to sleep but I honestly didn't feel well enough to cope with Jake's ever increasing freaking out bad mood.
At around 10.30am I felt okay enough to get Jake out of the house and into his wagon for a long walk. If Jake is difficult to handle these walks are the perfect thing for him. He settles down in the seat and just watches the world go by. His younger sister A. used to come with us but is less interested these days. So Jake and I walked for around about four miles and then we came back and spent some time in the garden.
He and A. seemed to quite enjoy that time and I pushed A. in her swing which made Jake smile and wander up a couple of times to try pushing her himself. I always find that kind of thing so encouraging and reason for having hope for Jake.
At lunch Jake was also making a valiant effort to use his fork. Again, I just love seeing that because it shows he wants to try some things and for Jake thats been our biggest problem. Just doing everything to get him to try things.
The afternoon wasn't too bad. Jake napped after N. took him to his room with the curtains drawn and surprisingly he woke up in a semi-decent mood. We never know what to expect on the odd occasion when he naps during the day. Sometimes it can be like hell on earth when he wakes up and there's just no consoling him.
So we went through the evening with Jake and peace pretty much reigned throughout the household apart from the off complaint from Jake and the odd tantrum from A.
Jake went to bed at 8pm and finally fell asleep around 10pm. Here's hoping for a full nights sleep and then tomorrow it's a daycare morning for Jake.
N. got up around 5.30am and took him down stairs as he was getting even more vocal. I got up around 7.15am with all kinds of aches and pains and really felt quite unwell. I'd have liked it if N. could have gone back to sleep but I honestly didn't feel well enough to cope with Jake's ever increasing freaking out bad mood.
At around 10.30am I felt okay enough to get Jake out of the house and into his wagon for a long walk. If Jake is difficult to handle these walks are the perfect thing for him. He settles down in the seat and just watches the world go by. His younger sister A. used to come with us but is less interested these days. So Jake and I walked for around about four miles and then we came back and spent some time in the garden.
He and A. seemed to quite enjoy that time and I pushed A. in her swing which made Jake smile and wander up a couple of times to try pushing her himself. I always find that kind of thing so encouraging and reason for having hope for Jake.
At lunch Jake was also making a valiant effort to use his fork. Again, I just love seeing that because it shows he wants to try some things and for Jake thats been our biggest problem. Just doing everything to get him to try things.
The afternoon wasn't too bad. Jake napped after N. took him to his room with the curtains drawn and surprisingly he woke up in a semi-decent mood. We never know what to expect on the odd occasion when he naps during the day. Sometimes it can be like hell on earth when he wakes up and there's just no consoling him.
So we went through the evening with Jake and peace pretty much reigned throughout the household apart from the off complaint from Jake and the odd tantrum from A.
Jake went to bed at 8pm and finally fell asleep around 10pm. Here's hoping for a full nights sleep and then tomorrow it's a daycare morning for Jake.
Tuesday, June 30, 2009
Jake Waking Up
Yesterday was a fairly tough day with Jake. He didn't wake up at all happy and sometimes we suspect that the problem is because we were all home.
There's not been much to suggest that Jake is disturbed by a change of routine but he's so often used to having either one parent or the other out at work that we sometimes think that having us both at home causes him anxiety. There's always one of us at home with him but not normally both of us especially in the mornings.
It took a couple of hours for Jake to start to relax and this was mainly due to the hard work of N. who applied herself to trying to distract Jake from his bad state of mind. Later on in the morning we went out to do more shopping and in the afternoon I took Jake out for a 45 minute walk in his wagon before I went to work. Sometimes work is a welcome relief although I can honestly say that I don't ever really look forward to going but then who ever does?
This morning Jake has gone to daycare. We send him there three mornings a week to try and help him socialise with other children. We think there's been some benefit to this but progress is slow and we can never be confident as to what kind of morning he's going to have.
He was tough to wake up this morning but thankfully he did with lots of smiles (a marked contrast to yesterday) but declined all normal forms of breakfast before out of desperation I was able to persuade him to eat a couple of cookies just before we left. Not exactly breakfast food but I felt better getting him to daycare with at least something in his stomach!
There's not been much to suggest that Jake is disturbed by a change of routine but he's so often used to having either one parent or the other out at work that we sometimes think that having us both at home causes him anxiety. There's always one of us at home with him but not normally both of us especially in the mornings.
It took a couple of hours for Jake to start to relax and this was mainly due to the hard work of N. who applied herself to trying to distract Jake from his bad state of mind. Later on in the morning we went out to do more shopping and in the afternoon I took Jake out for a 45 minute walk in his wagon before I went to work. Sometimes work is a welcome relief although I can honestly say that I don't ever really look forward to going but then who ever does?
This morning Jake has gone to daycare. We send him there three mornings a week to try and help him socialise with other children. We think there's been some benefit to this but progress is slow and we can never be confident as to what kind of morning he's going to have.
He was tough to wake up this morning but thankfully he did with lots of smiles (a marked contrast to yesterday) but declined all normal forms of breakfast before out of desperation I was able to persuade him to eat a couple of cookies just before we left. Not exactly breakfast food but I felt better getting him to daycare with at least something in his stomach!
Sunday, June 28, 2009
Family Day Off
Today was Sunday and no one was working. I quite often work weekends but not today so we had nice potential for a family day.
We were aware of Jake being awake at 5am this morning but we don't know how long before that time that he was actually awake. It was typical that here was a morning with a chance of a lie-in and it wasn't to be. My wife, N. got up with Jake at 5.30am because he was being so vocal and we didn't want him to wake up his two year old sister, A. I stayed in bed until 7.15am and then got up while N. went back to bed for a couple of hours.
Jake, who is 5 was happy enough but I had quite the tussel with him to keep him downstairs as he wanted to go and play in the bathroom which we don't allow. But he soon settled down and was cheerful enough until around 10am. He started to complain a lot by then (he cannot speak but certainly can moan!) and so I took him and A. out to buy a locking handle so that we could keep him locked out of the bathroom from now on. Because it was within walking distance he sits in a pull-a-long wagon that keeps him very happy. He likes going out like that and watching the world go by.
After we got back N. and I decided to go and do more shopping and we loaded Jake and A. into the car. Again, Jake enjoys a car trip so this normally leads to a contented time. He is less contented when we walk around the store and it's a horrid combination of letting him walk where he often collapses to the ground, carrying him or pushing him in a store cart. None of these things keeps him happy for long so it's quite a chore.
After we shopped we went for a 40 minute drive and then had fast food. This is always tricky with Jake because we just don't know how he's going to behave. If he's good then we are able to stay in the restaurant but if he goes into melt down then we have to pack up our food and leave.
Today was a good day and we finished our meal in relative peace although we are careful to not take too long over eating.
This afternoon back home we put the hosepipe on mist because Jake and A. love running about on the deck getting thoroughly soaked. It was a warm and sunny afternoon and perfect for the water. The water focuses Jakes mind for a bit and is often great therapy for getting him out of a negative rut that he might be in.
It wasn't a bad day with Jake today. He wouldn't eat much supper this evening but later on ate some crackers before bed. He went to sleep within about twenty minutes because he was up so early this morning but that might just mean he'll be up early again tomorrow and early could be as early as 2am.
We were aware of Jake being awake at 5am this morning but we don't know how long before that time that he was actually awake. It was typical that here was a morning with a chance of a lie-in and it wasn't to be. My wife, N. got up with Jake at 5.30am because he was being so vocal and we didn't want him to wake up his two year old sister, A. I stayed in bed until 7.15am and then got up while N. went back to bed for a couple of hours.
Jake, who is 5 was happy enough but I had quite the tussel with him to keep him downstairs as he wanted to go and play in the bathroom which we don't allow. But he soon settled down and was cheerful enough until around 10am. He started to complain a lot by then (he cannot speak but certainly can moan!) and so I took him and A. out to buy a locking handle so that we could keep him locked out of the bathroom from now on. Because it was within walking distance he sits in a pull-a-long wagon that keeps him very happy. He likes going out like that and watching the world go by.
After we got back N. and I decided to go and do more shopping and we loaded Jake and A. into the car. Again, Jake enjoys a car trip so this normally leads to a contented time. He is less contented when we walk around the store and it's a horrid combination of letting him walk where he often collapses to the ground, carrying him or pushing him in a store cart. None of these things keeps him happy for long so it's quite a chore.
After we shopped we went for a 40 minute drive and then had fast food. This is always tricky with Jake because we just don't know how he's going to behave. If he's good then we are able to stay in the restaurant but if he goes into melt down then we have to pack up our food and leave.
Today was a good day and we finished our meal in relative peace although we are careful to not take too long over eating.
This afternoon back home we put the hosepipe on mist because Jake and A. love running about on the deck getting thoroughly soaked. It was a warm and sunny afternoon and perfect for the water. The water focuses Jakes mind for a bit and is often great therapy for getting him out of a negative rut that he might be in.
It wasn't a bad day with Jake today. He wouldn't eat much supper this evening but later on ate some crackers before bed. He went to sleep within about twenty minutes because he was up so early this morning but that might just mean he'll be up early again tomorrow and early could be as early as 2am.
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