New to this waiting for more investigation on my 19 month old son

Hi williamsmum2210,

  When my boys were younger they displayed a variety of behaviours, some of which appeared 'normal' and some of which in retrospect were most definitely ASD, But of course I just reported what I saw, I wasn't looking for anything in particular, nor did I really know anything about ASD or the presentations. Quite naïve really.

To be truthful, even when they were diagnosed I probably remained somewhat in denial, which is a shame really as I could have learnt a lot of coping strategies sooner if I'd done more research and read up on certain behaviours.

But in answer to your question, Yes I worried all the time about what i was witnessing. I may be pre-empting things here as you don't have a diagnosis yet and your son is still quite young, but when I questioned my Ed Psych about some of the more 'Normal' behaviours I was witnessing, he told me that in his opinion they appeared not to be 'natural, behaviours' but more 'learnt.'

This began to make more sense to me then and gave me the confidence to persue an assessment. The difficulty with presentation of anybody on the spectrum is that each presents differently. Some can even mask their condition very well, especially older people on the spectrum. It’s a coping strategy used to help you fit in.

l have had well-meaning individuals telling me that there was nothing wrong with my sons when they were young, in an effort to make me feel better, but the truth is that comments like that don't help. They can even cause you to start second guessing yourself, which I strongly urge you not to do. If you suspect all is not right, you are doing the best thing for your child by getting them assessed. And if you do get a diagnosis, early intervention can make a huge impact in helping your son.

I remember trying to talk to a primary Head teacher about my son once, who insisted my son was fine in School and all was well. I explained he seemed deeply in his own world and did not play with others and also that I had serious concerns over his reading and writing difficulties. He turned to me very arrogantly and said, 'Lets take a look shall we?' and we left his office to observe the children from the classroom window as they played in the playground outside.

My son was sat on the playground floor all alone in the corner, rocking and talking to a piece of blue tack he kept in his pocket as a stress ball. I simply burst into tears. The Head remained in denial until I commissioned an ED Psych’s and Dyslexia report that finally realised my concerns and spelt it out in black & white. At that point I took them both out of the School and home educated them. This was the catalyst that prompted me to have my sons assessed.

On the issue of sleep it's always been a battle with my sons. One comfort eats at night and now he's older that can be an issue if he tries cooking unsupervised. The other has night terrors and will walk over furniture in a sleep state, which can be quite dangerous. For obvious reasons, nights are very disturbed in our household.

When my children were younger, I employed a whole host of strategies in succession and repeated them in rotation when they began to wane in their effectiveness.

Here are just some i've used to help effect sleep with my boys. I’m sure you may have tried some yourself already.

• Routine:- A regular routine is essential for bed time and ideally any wind down from daytime activities should be started much earlier than when its time to go to bed. Calm pursuits, not stimulating.
• Eating:- eating something either toO early or too tale in the day can have an effect. Most people say you should not eat after a certain hour, however in the case of one of my boys I’ve had to move his last eating time forward to much later to help sustain him for a greater period of the night. (He has to eat regularly so that he doesn’t feel unwell, but for some reason his night time switch doesn’t recognise the fast period that most of us have at night.) Experiment with the timings of the last meal to see if this has an effect.
• Ear ache, clingy behaviour or crying at bedtime and won't go down to sleep alone. :- Take off the tee-shirt you've worn all day (The smellier the better) and wrap it around a hot water bottle ensuring the water inside is not too hot. For ear ache, let the child lie, painful ear down, on the warm hot water bottle and tee-shirt. The warmth is soothing for the pain and also comforting like mums cuddles, but also the heat makes the scent on your tee-shirt (Your scent) more noticeable as your childs nose is quite close to it. It gives the comfort of your scent without you constant presence, which I know can be very draining
• Sensory overload:- sometimes people find the silence of night time too overwhelming and will make noise themselves to drown out that overload or anxiety. This can result in screaming at bedtime.  Choose a calming CD, TAPE etc. (Sorry showing my age here) or MP3 and play it on a low volume. Experiment with different genres, bird noises, water sounds etc or even with childrens audio books . Put it on a loop, as when it stops they are sure to wake again.
• Bathing:- A bath before bedtime seems to relax the most anxious of us and the same applies to those on the spectrum, providing they don't have sensory issues associated with it. (My son loved baths, but would scream the house down if he was showered him before bedtime.) Bath time every evening isn't always practical, but can have an impact if done at least every other day.
• Light:- light stimulus has a huge impact on those with sensory issues. Make sure the room is comfortable, warm and dimly lit. The blue light emitted from led apparatus like TV's, computers, pads etc has now been scientifically proven to disturb the sleep patterns in the brain and so will standby lights on appliances, so make sure they are turned off or removed from the room. (It’s worth mentioning at this point that a friend of mine who also had a child on the spectrum actually used a coloured light mobile to sooth her child, as he was calmed by the pattern on the ceiling. Experiment with whatever you feel is best.
• Smell:- In times of illness or just for sleep purposes, I’ve used scent to help calm. Lavender being my favourite, which I could use as a roll-on on the skin, in an aroma fan, as a linen spray or in hot water for Chest infections. Although, with Chest infections I tended to use a few drops of eucalyptus or Olbas oil in hot water. Lavender can also be used as a calming scent if combined with the bath water.
• Touch:- My son hated hugs, but loved 'Strokey Strokes'. It sounds odd I know, but ‘Strokey Strokes’ really just involved me doing ‘Round & Round the Garden’ on the palm of his hand. He was captivated by the motion and soothed by the effect. See if you son is receptive to a similar calming stimulus.
• Grounding:- I never realised what I was doing, but with one of my boys I noticed he favoured a particular, very heavy and cumbersome duvet on him at night. As the room was cool I would also add a blanket on top of this so he stayed warm. This seemed to calm him. Many years later I learned that some youngsters need the feeling of being grounded and clearly this grounded him. Nowadays, you can purchase weighted blankets for exactly that purpose. Find out if this helps first before you rush out and buy one, but bear in mind that overheating maybe an issue with too many blankets.
• Clothing:- Your child may favour a certain pair of PJ's. If so, try and get a few pairs. Sensory irritation due to night clothes that cause distress is quite common, but the most often overlooked. Experiment with seamless items or things that are soft. My son was always naked by the morning until I realized his PJ's were actually uncomfortable for him.

I hope some of these ideas work for you. It's very much trial and error, but do try things for a prolonged period to start, so that he has time to adjust.

Good Luck! My heart goes out to you.

Regards

Coogybear xx

Hi williamsmum2210,

  When my boys were younger they displayed a variety of behaviours, some of which appeared 'normal' and some of which in retrospect were most definitely ASD, But of course I just reported what I saw, I wasn't looking for anything in particular, nor did I really know anything about ASD or the presentations. Quite naïve really.

To be truthful, even when they were diagnosed I probably remained somewhat in denial, which is a shame really as I could have learnt a lot of coping strategies sooner if I'd done more research and read up on certain behaviours.

But in answer to your question, Yes I worried all the time about what i was witnessing. I may be pre-empting things here as you don't have a diagnosis yet and your son is still quite young, but when I questioned my Ed Psych about some of the more 'Normal' behaviours I was witnessing, he told me that in his opinion they appeared not to be 'natural, behaviours' but more 'learnt.'

This began to make more sense to me then and gave me the confidence to persue an assessment. The difficulty with presentation of anybody on the spectrum is that each presents differently. Some can even mask their condition very well, especially older people on the spectrum. It’s a coping strategy used to help you fit in.

l have had well-meaning individuals telling me that there was nothing wrong with my sons when they were young, in an effort to make me feel better, but the truth is that comments like that don't help. They can even cause you to start second guessing yourself, which I strongly urge you not to do. If you suspect all is not right, you are doing the best thing for your child by getting them assessed. And if you do get a diagnosis, early intervention can make a huge impact in helping your son.

I remember trying to talk to a primary Head teacher about my son once, who insisted my son was fine in School and all was well. I explained he seemed deeply in his own world and did not play with others and also that I had serious concerns over his reading and writing difficulties. He turned to me very arrogantly and said, 'Lets take a look shall we?' and we left his office to observe the children from the classroom window as they played in the playground outside.

My son was sat on the playground floor all alone in the corner, rocking and talking to a piece of blue tack he kept in his pocket as a stress ball. I simply burst into tears. The Head remained in denial until I commissioned an ED Psych’s and Dyslexia report that finally realised my concerns and spelt it out in black & white. At that point I took them both out of the School and home educated them. This was the catalyst that prompted me to have my sons assessed.

On the issue of sleep it's always been a battle with my sons. One comfort eats at night and now he's older that can be an issue if he tries cooking unsupervised. The other has night terrors and will walk over furniture in a sleep state, which can be quite dangerous. For obvious reasons, nights are very disturbed in our household.

When my children were younger, I employed a whole host of strategies in succession and repeated them in rotation when they began to wane in their effectiveness.

Here are just some i've used to help effect sleep with my boys. I’m sure you may have tried some yourself already.

• Routine:- A regular routine is essential for bed time and ideally any wind down from daytime activities should be started much earlier than when its time to go to bed. Calm pursuits, not stimulating.
• Eating:- eating something either toO early or too tale in the day can have an effect. Most people say you should not eat after a certain hour, however in the case of one of my boys I’ve had to move his last eating time forward to much later to help sustain him for a greater period of the night. (He has to eat regularly so that he doesn’t feel unwell, but for some reason his night time switch doesn’t recognise the fast period that most of us have at night.) Experiment with the timings of the last meal to see if this has an effect.
• Ear ache, clingy behaviour or crying at bedtime and won't go down to sleep alone. :- Take off the tee-shirt you've worn all day (The smellier the better) and wrap it around a hot water bottle ensuring the water inside is not too hot. For ear ache, let the child lie, painful ear down, on the warm hot water bottle and tee-shirt. The warmth is soothing for the pain and also comforting like mums cuddles, but also the heat makes the scent on your tee-shirt (Your scent) more noticeable as your childs nose is quite close to it. It gives the comfort of your scent without you constant presence, which I know can be very draining
• Sensory overload:- sometimes people find the silence of night time too overwhelming and will make noise themselves to drown out that overload or anxiety. This can result in screaming at bedtime.  Choose a calming CD, TAPE etc. (Sorry showing my age here) or MP3 and play it on a low volume. Experiment with different genres, bird noises, water sounds etc or even with childrens audio books . Put it on a loop, as when it stops they are sure to wake again.
• Bathing:- A bath before bedtime seems to relax the most anxious of us and the same applies to those on the spectrum, providing they don't have sensory issues associated with it. (My son loved baths, but would scream the house down if he was showered him before bedtime.) Bath time every evening isn't always practical, but can have an impact if done at least every other day.
• Light:- light stimulus has a huge impact on those with sensory issues. Make sure the room is comfortable, warm and dimly lit. The blue light emitted from led apparatus like TV's, computers, pads etc has now been scientifically proven to disturb the sleep patterns in the brain and so will standby lights on appliances, so make sure they are turned off or removed from the room. (It’s worth mentioning at this point that a friend of mine who also had a child on the spectrum actually used a coloured light mobile to sooth her child, as he was calmed by the pattern on the ceiling. Experiment with whatever you feel is best.
• Smell:- In times of illness or just for sleep purposes, I’ve used scent to help calm. Lavender being my favourite, which I could use as a roll-on on the skin, in an aroma fan, as a linen spray or in hot water for Chest infections. Although, with Chest infections I tended to use a few drops of eucalyptus or Olbas oil in hot water. Lavender can also be used as a calming scent if combined with the bath water.
• Touch:- My son hated hugs, but loved 'Strokey Strokes'. It sounds odd I know, but ‘Strokey Strokes’ really just involved me doing ‘Round & Round the Garden’ on the palm of his hand. He was captivated by the motion and soothed by the effect. See if you son is receptive to a similar calming stimulus.
• Grounding:- I never realised what I was doing, but with one of my boys I noticed he favoured a particular, very heavy and cumbersome duvet on him at night. As the room was cool I would also add a blanket on top of this so he stayed warm. This seemed to calm him. Many years later I learned that some youngsters need the feeling of being grounded and clearly this grounded him. Nowadays, you can purchase weighted blankets for exactly that purpose. Find out if this helps first before you rush out and buy one, but bear in mind that overheating maybe an issue with too many blankets.
• Clothing:- Your child may favour a certain pair of PJ's. If so, try and get a few pairs. Sensory irritation due to night clothes that cause distress is quite common, but the most often overlooked. Experiment with seamless items or things that are soft. My son was always naked by the morning until I realized his PJ's were actually uncomfortable for him.

I hope some of these ideas work for you. It's very much trial and error, but do try things for a prolonged period to start, so that he has time to adjust.

Good Luck! My heart goes out to you.

Regards

Coogybear xx