Sensory Processing Disorder (SPD) what’s that?

Sometimes I wonder where I’ve been for the past year!
It can only be described as an absolute whirlwind.
One thing I’ve gained from our experience is how to fight … for what you believe in … because you know in your heart your right.
On 16th March 2012 our first child entered the world, I’d spent countless hours watching a popular programme about birth stories (not sure if I can mention the name!) I tried to imagine what the pain would be like as I’d never experienced serious pain before, never been in hospital apart from my own birth, never broken a bone or ever had a serious illness.
I was mentally prepared for a natural birth, I found comfort in a ‘Hypnobirthing’ CD. At 4am on Friday 16th March my waters broke I was surprisingly calm! I didn’t have any contractions so when calling the midwife I was told to remain at home until the labour progressed. By lunchtime nothing was really happening and I didn’t feel right I noticed something wasn’t quite right so I phoned the midwife again and after describing my symptoms, was told to immediately go to the hospital. When I arrived I was told that I had Meconium in the waters, I surprisingly was still calm I think adrenaline had taken over. After a few hours nothing had progressed so I was told I’d be induced with a drip, with the addition of another drip in the other arm due to having Strep B. I was constantly monitored on a heart monitor and given pain relief after the induction made the contractions come thick and fast. Then I can only remember being very sleepy and drowsy whilst an epidural was put it. The pain went away but nothing progressed, I then started to become anxious and unsure of what was going on, the midwife said to me: “your baby is becoming distressed, the heart rate is dropping, we need to act quickly to get the baby out,” the next thing I can remember was a yellow form being placed before me to sign consent for a c section. I remember the lights along the ceiling of the corridor, it was 11.30pm and there were so many people in the theatre room. Lou was born at 11.45pm, she was safe and the most precious thing I’ve ever seen. I was crying and nervously laughing as the surgeon finished stitching, I was made to laugh more as he said “no mommy, wow mummy” to stop me from moving!”
The day after I looked like a swollen balloon! Lou was struggling to latch and I felt like a failure, I wanted to go home and found it overwhelming.

Time went on after returning home, Lou developed Colic and was hard to settle but overtime it became easier. At 6 months old she became sick when given dairy items – literally projectile!
Lou was diagnosed with a dairy allergy at 9 months old, which may be a factor with her current relationship with food, only sticking to the same foods that she perhaps feels safe eating.
Lou sat up at 8 months, crawled at 11 months and didn’t take her first steps until 17 months. I took her to be assessed by a Physiotherapist as she tended to walk on the outsides of her feet just like her dad and had mysterious fatty lumps on the heels of her feet. No ongoing issues were found. I have recently read via research I’ve done that children with SPD tend to be later crawlers and walkers.
I first noticed behavioural issues about 2 years of age, which I put down to the ‘terrible 2’s’ stage. She was impulsive – would run away from me and not be worried if I’d gone out of sight. After settling into our new home and new pre school I thought that her behaviour would be just a ‘stage.’ Lou started to have extreme tantrums at the start of the summer holidays of 2014, even though we did so much together – picnics, parks, visiting friends and family, etc., She still would meltdown whenever we were at home. Then I discovered I was pregnant with my second child, we put off telling Lou to prevent any further upset. I then approached a local service for help and advice with the behavioural issues and temper tantrums, I was told this was ‘age typical’ and agreed that a parenting course may be beneficial.
I was getting on well at the course and my confidence was building but I had to walk 1 and a half miles to catch a bus from my home, then travel 7 miles on the bus to the course destination, so I managed 4 sessions but to suffering hip and back problems in pregnancy and had to wear a support belt. By 6 months of pregnancy it became noticeable and we tried to explain to Lou that she would be having a baby brother or sister to prepare her. We noticed a massive a increase in the amount of tantrums Lou was having and she came across as angry towards both myself and her daddy. This was upsetting for me with the addition of pregnancy hormones to contend with, I kept telling myself once she’s older she’ll get better.

We expected the difficult behaviour to still continue after the birth of my second child, Moo. It was difficult having to deal with the meltdowns whilst also recovering from a C-section. Because we couldn’t get out very easily, time at home can only be described as ‘desperate,’ professionals that I spoke to continue to promise me that this behaviour was normal for her age and that it would pass. I chased up a waiting list I’d been on since before Moo was born and they had no recollection that I’d asked for support. I felt completely let down by the system and that they didn’t believe that it really was that bad so I started to take pictures and videos of how bad it could get, with any item Lou could get her hands on being launched at me down the corridor, I had to hide away in the bedroom with Moo to avoid being caught with a flying toy or book!
Going out anywhere with a pushchair and Lou became a nightmare, she’d randomly and impulsively put all of her force onto the pushchair in an attempt to swerve it into the road. I had to have my wits about me 100%. She would sit down in the middle of the road whilst we were using a pedestrian crossing, so I’d have to lift her up and carry her off! Some kind people would ask if I needed any help but I was just mortified when people watched and stared at us! I wanted the ground to open up and swallow me!
Walking to and from places were also a nightmare, Lou would impulsively sit down on any pavement and even lie down in a protest to be carried. I tried using a ‘Buggy board’ but she was too heavy and the whole pushchair would tilt over!

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After this came what I describe as the ‘extreme tantrums,’ they occurred up to 10 times a day and were physically and mentally draining. These tantrums or anger outbursts were usually started through Lou trying to grab the legs of Moo whilst she was in my arms, we often just had to shut a stair gate and keep Moo in to prevent any harm, whilst any item possible was launched down the corridor. I stressed at first about the damage done to toys and books as I couldn’t replace them, but had to learn that these outbursts were a cry for my attention. Its so difficult to care for a newborn and deal with all the hormones when all this is going on, Moo was so dependent of me but I was desperate to give Lou the attention she needed.

 

Any help I asked for from then on from health visitors and the local children’s centre came to the conclusion Lou’s behaviour was down to our ‘parenting skills.’ Any behaviours I described they came to the conclusion this was “normal for her age.” I was fed up with hearing this over and over again. I completed 2 different parenting courses, some changes were made including the use of a ‘Visual Timetable’ and signing words, we also ensured that we worked as a team, with clear and consistent boundaries. With the continuation of ‘normal for her age’ Lou’s behaviour, especially at home and when out in public became worse rather than better as the professionals believed it would as she accepted Moo and that she was here to stay in our family! I finally cracked and wrote an 8 page letter to our family GP in December 2015 as I struggled to get Lou down to the GP’s surgery on my own. Our family GP, from looking at all the evidence could see that it was in fact Sensory Processing Disorder that Lou had. The GP referred her to an Occupational therapist. By early March 2016 I still hadn’t heard anything about this referral, so I chased it up to be told that Lou was to see a Community Paediatrician in April 2016, this was news to me! I’d visualised Lou being given to support, in particular how to teach her that she’s putting on too much pressure onto Moo and other people. Only time will tell if we get the appropriate support and advice to help Lou as she grows. I read another article where the parent believed that the professionals she took her son to see were unwilling to diagnose him with anything as they believe she was just trying to get Disability Learning Allowance. We already know that we don’t qualify for this so all we are after if some answers to help cope with our daughters condition in order to help her in the best way possible.
SPD is not as well known in the UK as it is in places such as the USA. I’m researching SPD to understand it more and have joined support groups in the UK and USA.
Here are the traits that Lou currently displays, in a nut shell, there’s more in the folder I’m collating for her!

  • Has extreme meltdowns/tantrums – hitting, kicking, throwing objects, screaming. (As discussed previously.)
  • Not keen on wearing clothes, will take them all off after returning to the house.
  • Is rough with younger sister, she doesn’t realise how much pressure she’s putting on her sister to hurt her. Rather than playing with her she just wants to wrestle her finds it difficult to focus on playing with toys.
  • Will only eat the same foods everyday. These are usually dry and beige in colour! Will notice if there is a slight variation e.g. a change in the brand of sausages! Reluctant to try new foods, will spit out if she doesn’t like the taste.
  • Never feels full – will say “I’m hungry” all day, at parties she will keep eating until the point where she is sick.
  • Is anxious before leaving the house or in unknown situations, has to be told several times what is happening and now uses visual picture cues to prompt.
  • Will not always give eye contact, does more to familiar family members, it is difficult to gauge whether she is actually listening to what is being said, or just choosing to ignore.
  • In conversation will talk off topic, if something pops into her head she will talk about that instead of the original topic of conversation.
  • Chews objects and sucks clothing, especially toys.
  • Sensitive to noise – covers ears. Dislikes loud and unexpected noises, e.g. a crowd of people clapping, a hand dryer. Creates loud noises herself to cover other loud noises, if Moo is crying she will try and drown out the noise with her own, e.g. screams, shouts.
  • Hates wearing clothes – will tolerate leggings and joggers, hates jeans, doesn’t like socks – will take them off at any opportunity, prefers to be in only vest and knickers at home, likes to outside without any footwear on.
  • Is a runner – doesn’t see potential dangers, finds it funny and will laugh as running away and want you to catch her, even by a busy road or run straight out of parks. Extremely impulsive and unpredictable.
  • Hates swimming, too afraid to get into the water even though she was taken swimming frequently from 8 weeks old.
  • Hates having hair washed, brushed and tied up, screams and says: “don’t touch me!”
  • Frequently appears hyperactive – wants to jump off furniture, climb over people sat there and runs around a room in circles, in public places will run around large spaces, e.g. the library.
  • Always in people’s faces – gets too close, no awareness of personal space and overly friendly to strangers, will go up to anyone who smiles at her and hug them, has no ‘stranger danger.’
  • Anger – so much pent up anger – will throw toys, furniture, anything can get her hands on. Shouts and screams at the top of her voice, usually says things like “my child” or “stupid adult” or “don’t look at me.” Has recently slapped me in the face in anger.
  • Struggles with empathy/sympathy – has no idea that she’s hurt Moo the majority of time.
  • Very centred around herself – e.g. when it was Moo’s birthday she couldn’t believe that the presents were not for her. She wanted to open all of them and had a meltdown if she couldn’t. If we’re eating/drinking even she’s just had her own she will always demand more.

There are many other little things that crop up, to this date no professional has read all of this info, when they ask the same question every time: “So… what is she like?” I just freeze, mix my words and they end up putting words in my mouth! And I end up agreeing with them every time!
This time I hope to be prepared and send on all the info I have collected a week before our Paediatrician appointment so they can then ask me questions based on all the info they’ve already been given. Often I’m told that this behaviour is ‘normal’ I’d love to hear from other people with experience in SEND, SPD etc, to hear their views. Because I was told it was my parenting that was at fault I completed 2 different parenting courses and, yes things have improved but its not cured all the issues, we still have lots of tantrums, anger outburst and
rough behaviour.

Reading all this back, I realise how similar I am to Lou and that’s maybe why I ‘get’ her, e.g. I remember being so distracted through a whole school day as a label was scratching my neck, I found it so hard to concentrate on anything else. My parents also remind me now how when I was Lou’s age I would change clothes at least 4 times a day, even if there was a speck of dirt on them!
As well as being so alike we are also different in many ways, e.g. Lou likes making loud noises, I like the quiet! I find it extremely overwhelming if both children are screaming and crying! Lou likes the light, I like the dark!

But I continue to fight for my child to be heard.

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