There follows a guest post from my lovely friend Emma, who has kindly agreed to write, in her own words, about her experience of a condition that affects up to one in twenty children, to varying degrees. I think she's amazing and I hope her story will encourage other families facing similar challenges.
I am a mum of 3 children, D is 3, L is 11 and J is 5 and has a Sensory Processing Disorder (SPD) and we all live together with dad too. Having a child with SPD is a daily battle, challenging, difficult, exhausting but also very rewarding. His condition affects the whole family in one way or another, which often makes me feel really guilty for my other children. We have all had to make sacrifices and will continue to do so.
J’s behaviour can be very unpredictable and can change in the space of a second. He changes his mind like the weather which can be very frustrating. For instance just this morning he asked for a bacon sandwich for breakfast because dad was having one and after it was made he cried and said he wanted honey on toast, bacon is too chewy. There is never a dull moment when you have a child with SPD and they will be sure to keep you busy from morning until night (and if you are really unlucky all through the night too).
J’s sleeping pattern has only just started to have some consistency. Up until recently getting him to sleep was a chore in itself and I would sometimes have to lie with him for over two hours stroking his back, applying pressure to his shoulders, tickling his nose and above his eyes – whatever he asked, by that time I am too exhausted to protest. This would interrupt the whole houses routine and would leave us all tired the next day. As he also has hypermobility he sometimes wakes through the night because his legs are sore and he will cry in agony. So I will have to massage his legs until the calpol / Ibuprofen kicks in and he drifts off to sleep again.
J has meltdowns, the worst temper tantrums you will ever see in a child. Calming him down can be impossible and we are only now learning about the importance of preventing the build up to a meltdown and recognising them before they happen. This is the biggest challenge we are facing at this stage! I will be going on a course for parents to understand SPD in the near future which the Occupational Therapist has organised.
J can be violent at times although this has improved slightly, probably to the fact we are learning when to intervene before he lashes out. He doesn’t mean to hurt the other person, he isn’t trying to be horrid, he just can’t help it. Even if the other person cries, rarely does J show any empathy and it is like he doesn’t understand why they are even upset. This can be difficult in itself and can often cause resentment for the person on the receiving end. How do you explain that to his 3 year old sister?
J is very sensitive also in many ways. If J is having a stressful day, even the slightest brush past him can send him crashing to the floor crying his eyes out like he’s just been hit by a ball. He likes to sleep with just his nappy on at night, rarely with a duvet on, with a fan blowing on him. We haven’t decided if it is the cold air or the humming noise which comforts him most, but I suspect it is a combination of the both which helps and it is since doing this his sleep pattern has improved greatly.
For me as a mum, the best moment is when he comes to me for a hug or a kiss or tells me he loves me. With my other children often you can find a way to steal a kiss without a huge drama but for my son, I couldn’t just grab him and kiss him all over his face like I do with my daughters; it is difficult to know whether you might get away with it or whether he would scream at you and so it is best to wait until he comes to you or you ask him and he agrees. Anything which catches him by surprise can cause very dramatic reactions. The majority of this post sounds like I am being negative, but the truth is there is no way to make this sound any better. This is all true! It really happens. But having him teaches me so many new things, I have a completely different level of patience, I face problem solving many times a day, but I do love it! Having my son has taught me so many new things, about other children, about a whole world completely alien to me and about me as a person and as a mum.
The next biggest challenge I face is the summer holidays! Keeping any child entertained during the 6 week break is sometimes exhausting but a child with SPD has to be kept busy otherwise they will get bored which is guaranteed to be followed by a meltdown. In the garden we have set up the paddling pool, a swing set and bought a few activities for the garden like hula hoops, a Frisbee, inflatable hoppers etc. The swing set is probably the most important thing to us as many children benefit hugely from the swinging sensation and this can help them to feel grounded and so I often suggest throughout the day for J to go on the swing. I will have to be very organised if I am to reduce the stress in the house to a minimum and think of some fun things to do to keep them all busy as well as activities which will be good for his senses.
I will be sharing our experiences over the summer holidays and I hope that I can provide other parents with ideas to help them also during the holidays.
My children are definitely water babies! Today we had a water fight. Dad grabbed J and dunked him in the pool which nearly led to a meltdown – he wasn’t expecting it and he started to cry and shout at him. That was until I distracted him with a water balloon to throw at dad which he loved. I have read that throwing is a great activity to do with a child with SPD and so thought we would give this a go. We filled the pool with water balloons and my daughter and her friend joined in too. Jack absolutely loved this. He often hits himself or pinches himself, common in SPD and so this was great for him as he could hit himself over the head with the balloons and it was completely safe and it satisfied his needs at that time! He was in his element. Such a simple activity yet great for him and kept him entertained for hours! He loved the feel of the balloons filled and shaping them, biting small holes in them to squirt water.