15 December 2016

Chapter 5 - Jumping Through Hoops

A Journey into the Unknown

In the last part, Chapter 4 - Rock bottom before a diagnosis - there were a few details I missed out and so if you’re just joining us then you may be a bit confused, it might be wise to go back a little and start from the beginning. You'll find all the previous chapters on the Lots Of Love Actually page. It's not boring I promise.

I’m going to start this chapter with a little bit about her sensitivities, before I knew about them to be able to understand them properly and help her efficiently.

Lola really struggled with just being a sister, she was convinced she was her mummy.

My daughter was always naked, as she hated being dressed. I didn't realise why, but I knew she loved to be naked and free. Everyone used to tell me to put her clothes back on but there was no point. She would just take them off again. She wouldn't entertain the idea of a pretty dress, it was more boyish clothes she liked, I mentioned before that she loved tracksuits or pyjamas.

She changed her clothes about 20 times a day.

She was always upstairs getting a new outfit. It was damn frustrating, her drawers were always a mess I was washing her clothes all the time. I had so much washing it was unbelievable. Eventually, we found what worked and what didn't and she learned to choose her clothes herself. We have a drawer full of stuff she will not wear and a few outfits she would wear until she was 26 unless I hid them, or "accidentally" ripped them up so she couldn't wear them. (Not really, but I did have to hide them and pretend I didn’t know where they were.) At age 4 she had been in the same school trousers since reception class and they were getting to the point where they were digging into her sides and the term ‘ankle swingers’ was an understatement. At the end of term, I threw them all in the bin so she then had to wear the "new" ones I brought a year before, that had been hanging around waiting for her to become attached to those too.

She would not wear tights, or leggings, (unless for bed) - I have no idea why that matters. She likes jeans or tracksuit bottoms or jean shorts. At this point (3 years old) I had only got her into a dress on special occasions but I still take that spare comfortable outfit I know she will want to change Into once she's had enough.

There was a reason that she didn’t like clothes and was always naked and that’s because she hates the feel of clothes on her skin, the tags at her neck used to cause her massive rashes she was that sensitive. Certain materials hurt her. Imagine someone bought you that beautiful soft-looking fluffy jumper for Christmas and you tried it on and it was scratching your skin so much you couldn't wear it? Well, most clothes feel like this to her and so I just have to trust her and let her wear what she wants. I didn’t always feel like this, it took me a long time to get to the point where I can get over the frustration that her symptoms, traits cause me, and it wasn’t down to ignorance or intolerance, it was down to being uneducated. I used to get so angered at the number of clothes she was getting through, or the fact I couldn’t dress her how I wanted or that she was so independent. Everything had to be on her terms.

I don't care anymore if she looks like a tomboy.

Or whether she is dressed in a tracksuit and her hair is all messy because she's sensitive to the brush, or her face is unclean because she hates being wiped. She's comfortable and happy and when she is happy, we all are. I don’t care what people think, if she’s scruffy, or if she’s wearing her brother's clothes, or even if her hair looks so awful it looks like it's been brushed with a firework. She is who she is and that really is all that matters.

She learned to be independent from a very early age, she was washing her own hair with shampoo and conditioner, she was dressing herself, she was choosing her own clothes, she was wiping her own face, by age 2 easily. I do have those odd moments where I feel sad about the path we have to take, but those moments are few and don't really last for long, to be honest. She's such a courageous little girl and I admire her so much. She is strong, and confident, and I love her with all of my heart.

One thing that can be quite worrying with her is how heavy-handed she is, We got a kitten, and she used to pick him up and carry him under her arm like a baby and she never left him alone. He now, unsurprisingly, hates her. Anyone ever remember that story of Lenny and George? That's my baby! The same with others too she pushes too hard, squeezes too tight, if she's in the bath with you and she's washing your back she'll use her nails but she will get harder and harder, she loves this type of feedback that the sensation of scratching is giving her. When taking toys, she snatches, when walking around the house she stomps so hard it's like she’s jumping with every step,

So coming back to where we left off last time, I’ve just had a new baby and my eldest boy was besotted with her, although a few nights in I heard him get up and slam his bedroom door after she had woken for the 189,675^th time, whereas Lola just thought she was a dolly and that she could pick her up whenever she wanted to, I had to step up my vigilance now. I could not leave Baby alone for a second. I either had to make sure I took Lolly with me wherever I was going or that I took the Baby, Even to the toilet, I had to take Lolly with me. I couldn’t even pee in peace, all day every day one of them was by my side.

Lolly was going into pre-school, and my boy into year 1. They went back to school two days after I gave birth and I was really poorly with a womb infection and mastitis, so was pretty much laid up not doing much, Kenny took them both and I was gutted to be missing out on her first day. Turns out she was fine, she ran off quite happily. It was after about a week, she realised it was long term and she screamed and screamed, she didn't understand why we were leaving her. I know they don't really understand at that age anyway, but Her world was different, she was entering the unknown, people didn't understand her and we did, it scared her. She didn’t feel safe and her behaviour deteriorated. Her communication was limited, but because she was so young everyone just put it down to her age and that she was still a baby.

The pre-school noted a few things that were of concern.

When she hurt herself she wouldn’t talk to anyone, she completely withdrew into herself and became mute. It worried people, A LOT especially if she had bumped her head. You had to be a very special person for Lolly to feel safe enough to reveal her true feelings to you when she was hurt. They also noted that she didn’t play and her attention span was only 1 minute. They couldn’t get her to engage, she would only do things on her own terms and she would constantly flit from one thing to another and never settle. She loved to sing, it was her favourite thing to do. In fact, she sang better than she could hold a conversation. If she spoke she used one-word answers. She was constantly disruptive and used to snatch a lot off of the other children and draw all over their work, she had no social skills, and because she was a live wire it was hard to keep up with her.

At Christmas, the pre-school gave each child a present and they brought her a book called “the naughty sheep” - how ironic.

The long-awaited appointment with the community paediatricians.

Her appointment came around quickly, We arrived in time and sat in the waiting room, She went into the little playroom and closed the little gate behind her, it had a little lock on it and she just stood there opening it and closing it back up, it was really sweet, she stood there waiting for all the other children and would just unlock it and lock it back up again after they’d entered. We were called in and the paediatrician took an extensive history of her and our family background. The newest addition was very poorly she was 10-11 weeks old and she had a chest infection.

She noted all of her history, and they played some games and gave her a medical examination.

Here are a few things I forgot to mention before that I just read in the report.

1. She loved bath time.

2. When I was pregnant I couldn’t take her to the toilet all the time so I had to start counting for her and this became a habit for her and in the end she wouldn’t go upstairs without me counting for her.

3. She was addicted to undoing and doing up buckles, on high chairs and buggies etc, and zips and poppers.

4. She didn’t like peek-a-boo as a baby, but at three years she enjoyed it like she was a baby.

5. She used to talk to you looking up at the ceiling.

6. She used to wake up singing. (It was beautiful)

7. She would walk on her tip-toes.

8. She used to lay on the floor and push cars to and fro whilst watching the wheels move.

9. She still used to choke at this age whilst eating dinner.
She used to eat or lick everything and anything. She used to eat non-food items.

At this assessment her Speech and language skills were assessed and were found to be age-appropriate, She demonstrated nice joint referencing, pointing and a variety of intonation and facial expressions and gestures. She “attended very well to the toys” She was chatty and played with dad.

I told them that she woke up screaming every single night and seemed to be in absolute agony. They told me it was, without a doubt, night terrors. I knew it wasn’t, I'd been there and done that with my boy, I knew what night terrors looked like; children looked frightened, scared. Not in agony, sweating, unable to communicate, feet burning up, I didn’t know what was wrong but she was most definitely awake whilst she was crying.

I only found out that she had hypermobility when I received the consultant's report. Why hadn’t she told me? In her report, it says “she is however very hypermobile at the knees, ankles, fingers, hands and hips.” Did I not need to know this? I could have had questions about it. I did have questions about it. Many in fact, but I never got the chance to ask them because later on in her report it goes on to say

“WE have agreed the following plan”

1. Find a parenting program for the parents to attend.
2. I have discharged her from regular paediatric follow up.

WE did not agree any such thing, in fact discharging us was news to me. So I had no choice, I had to use Google. I Googled Hyper-mobility and found that her night-time waking was probably due to her pain. So I went back to the doctor and complained about being discharged and he got in contact with her, she took it to a panel of people who decided based on her findings that She did not need to be reviewed. These people haven’t even met her, None of them had even met me. What gave them the right to decide that her symptoms weren’t severe enough to warrant a review.

Well, they weren’t banking on meeting someone like me. She did get a review in the end, I complained so much that they referred her to the consultant.

It also says she has excellent social communication skills, and that she is just an extreme version of normal. Huh? what the hell does this even mean? Apparently, she does have some tiny little traits but these will either become more prominent as time goes on or disappear completely.

So it was all my fault, I had a naughty child, I was imagining that she had something neurologically wrong with her. I needed to go on a parenting course to learn how to handle my three-year-old. They were forgetting I already had another child who had no behaviour issues at all. (At that point.)

I was so upset. I cried on the way home. I was angry and distraught, She had embarrassed me, made me feel really, really small. I thought that was the end of it. We just had to carry on and deal with it. No one believed me. I'll just go on a parenting course and learn some discipline strategies. Yeah right. That was never ever going to happen. If I thought I had already hit rock bottom, I was wrong.

I was deflated at this point. I left it. I thought ok ill give this a go. I’ll see if I can turn her behaviour around using neuro-typical behaviour strategies. I’ll jump through their hoops. Turns out the consultant we were referred to for her hyper-mobility was an absolute legend……….

Share This Post With a Friend:

14 December 2016

You have no right to judge.

You have no right to Judge

What gives people the right to make such judgmental comments to others. I read a beautiful post yesterday from The Bowels of Motherhood asking people not to give up on her due to her time restrictions and not having enough of it to spend with friends and family or help out at the school. It really struck a cord with me and I shared with her a post I wrote for firefly which was really similar called I’m Sorry. We connected and swapped likes on each others pages.

Today I’m sat here - after spending all week at the GP surgery and Chemist trying to work out what’s going on with my families medication, spending 3 hours of MY day sorting out other people mess when really they should have done this themselves. I have 5 people in my house hold and we all need medication from asthma inhalers, to very strong pain relief for my partner who has a very rare genetic condition. We NEED this medication to be regular and easy to order – Sat here with no Christmas tree, no decorations, I have barely brought a gift on the list and the food shop has gotten as far as requesting a deliver slot and adding three things to the bloody on-line basket. So whilst I still have all of that to do in preparation for the most exciting and festive time of year, I am here exhausted, feeling rather poorly, my bones are hurting, my nose is blocked and my eyes are stinging. I have no motivation. I have lost all of my Christmas spirit because I am so totally exhausted.

Why oh why do people make such ignorant and insulting remarks to people who are trying their hardest to get it just right!

People whom battle daily for, health and education for their children. Parents who, endure violent meltdowns almost daily, sometime numerous.

So you aren’t exhausted. You aren’t tired. and by the sounds of it you have it all worked out for the rest of your life that nothing will get in your way or drag you down. You will attend every single meeting, appointment, or school report. You’ll bake those cookies every week for the PTA, you will make decorations for the classrooms, get your child to school at the right time each day in the correct uniform with nothing missing, they will have fresh uniforms, all crisply ironed and no chocolate milk on their faces, pretty bows in their softly conditioned hair that’s been plaited to perfection.

This is not reality.

Even for parents who have children with no additional needs or disabilities. I think you just wanted to be a troll. Maybe you have been upset that day and taken your frustration out on someone who is clearly trying their hardest for their children. Maybe you are bitter. Maybe just maybe you could SCROLL past.

There is a whole community of us out here who will do our damned hardest to protect/defend those who do not deserve your ignorance. So we are tired. THIS is reality. It isn’t as simple for everyone who have autistic children to hire a poop trainer! So jump down off of your pedestal before you’re pushed. Because no one likes a show off!

Share This Post With a Friend:

13 December 2016

Sensory Processing Disorder Tips and advice

In this post about Sensory processing Disorder I'm going to share some tips, advice and strategies that we've found very successful.

These wont be successful for everyone and you may need to tweak them to suit your child's needs. But if they do work they can be very effective. In fact when we transformed my daughters bedroom into a sensory room it took her a year to start using the space under her bed. Mainly because she doesn't like being on her own but slowly she is using it when stressed and thats a massive achievement. Having a Sensory diet that you use consistently can really help manage your child's sensitivities. It can give your child a better understanding of their own needs, and help them to realise when they may need to use these strategies themselves creating some understanding and independence when they aren't with you. However please remember, that this advice is based on my own personal experiences with a child who suffers with SPD, I am in no way a professional with qualifications, i am only a professional of my own child's needs.

If this is the first SPD post of mine that you have seen, I also have another two posts that would most probably be quite helpful for you to read - The first one called Confused about Sensory Processing Disorder and the second one is My Daughter and Sensory Processing Disorder. I have also written my Top Ten Sensory toys for the home.

My Daughter

She hated noisy and busy places, I would find that i couldn't actually take her out many places. Supermarkets remind me of a time when she would be screaming, running up and down the aisles, running off and getting lost, flapping and screeching. There were too many people, there was too much excess noise and the whole experience left us scarred. Likewise shopping for shoes, or clothes, there would be too much going on in the stores for her to be able to organise her senses efficiently enough to be able to attend to the task in hand. All these people moving about simultaneously, a baby crying in the push chair walking past, the lights and fans above her head whirring and flickering, She just could not tolerate all this overload at once and we would end up in a situation where i would be in the corner of the shop, trying to talk her down, calming her, reassuring her,

But once she had reached that peak the only sensible thing to do is abandon ship.

This didn't stop the inevitable though, once a child who suffers with SPD has an overload of information into their brain its very difficult to contain the outburst. They have to release it, it may be possible to delay it by using techniques that suit your child like i do with mine, for example we started taking play dough out with us in the shopping trolley, she would get her "Treat" of play dough and it would take about 5-10 of pressure out of the situation but you have to constantly distract and revise these techniques for them to continue to work.

Once we knew about Sensory processing disorder we really started taking note of her difficulties and bringing supplies with us, an emergency bag if you like, of things to keep her calm, fiddle toys, chew toys and ear defenders. I would only ever pop into a shop to grab a few things, slowly building her tolerance levels up using these distractions. It helped to give her a list of things to find - Preferably the heavy things, allowing her to push the trolley and take control of the situation. But ultimately because i was distracting her she could have exploded at any point and we were well aware of the signs. So we knew when we had to leave a place, we started knowing which restaurants to go to, and ask them to seat us at a window corner table with some privacy, its not that clear cut all the time though, sometimes your own brain ignores these signals, pushing the limits and it will inevitably end in uncontrollable meltdowns, for us these meltdowns include, violence to other people or objects or places and even self injurious behaviours.

In school she was really struggling, they didn't understand her. She never showed any symptoms of anything in ordinary ways, she would always bottle things up. She would keep it locked inside of her to such an extent that she 'appeared normal' This was very frustrating for me because unless a professional was highly experienced they never noticed the subtle signs that she showed. She was defined as naughty and defiant. I'm going to give reference to a post i wrote recently called "why i describe my daughter as a coke bottle' because it will explain about this in a very clear way.

She hated assemblies, she always told me this, but nobody listened. She was fidgety, she had tics and she made lots of noises. Ultimately she started being taken out of assembly by a teacher and there were consequences for her behaviour. In a meeting i had once i told them that she disliked it and why, and i asked them not to send her anymore, instead give her something else to do. They were quite reluctant to listen to me, because in their own words

"she's making noises on purpose because she knows that we will make her leave"

My request was that once she had been allowed out of there for a few weeks, re introduce assemblies slowly, let her sit on a chair next to an adult and give her blu - tac. Slowly but surely within 6 months she was able to sit through a whole assembly. This was massive progress which made me so happy.

On the weekends there was no let up, her sensory sensitivities were severely heightened for some reason. She couldn't tolerate anyone or anything. Her and her brother had to be in separate rooms, and it was only me that could communicate with her verbally as she would not engage with anyone.

We transformed her bedroom from a toddlers room, into a very special place filled with aids and tools, to help her when things get a bit too much. She has a hanging swing, a bed which has space underneath for her sleeping bag, weighted blanket and bean bag with fiddly zips, poppers and buttons on. Sensory lights for her to use at will and bubble mirror on the wall.

Sensory Processing Integration Techniques

First thing in the mornings we got out loads of play dough and allowed her to squish and squash until her heart was content helping her with her hyper-mobile fingers and low muscle tone in her hands and providing necessary tactile input

She would love to clean the windows, and we have patio doors in the kitchen so we would spray them and give her loads of kitchen roll or a tea towel to wipe them clean, providing heavy resistance feedback for the proprioception system. It would take a lot of energy to do this and the stretching and wiping with force to clean would help to keep her focused for a while, and was obviously great for me as i had sparkling clean windows every weekend.

We bought some peanut physio-therapy balls that they could roll on and do exercises on and watch the TV whilst using them. These proved to be a massive hit.

We had special exercises that we do with her, her dad stretches her legs, and arms and does carpet exercises with her which she absolutely loves doing, She even asks to do them now which is a massive improvement because it means it helps her and she understands this.

Another great exercise for 10-20 minutes intermittently if your child can tolerate it is to put a music channel on the TV, music that they enjoy really loud (As loud as they can tolerate it) and tell them to dance or run on the spot as fast as they can. Play a really fast paced Simon Says game - With no losers because we all know how that turns out - and then when the 15 minutes is over we play sleeping lions. So we give them a massive burst of energy and then cool them off by a complete relaxation period. Then try and watch a short film. Please let me know how this one goes if you attempt it.

Another technique we have is to give her a little cup of water and a paintbrush and she spends lots of time painting our patio slabs in the garden. Keeps her occupied and focuses on fine motor skills.

If your child blows bubbles a lot, or spits, or blows raspberries and dribbles, then a really effective way of re-directing this behaviour is to give then a cup filled with half water and a straw and ask them to blow into it, making bubbles in the water, this will provide the feedback that they get from spitting, or dribbling and you can turn a negative behaviour into something positive.

In school, My daughter is always the teachers helper, she liked to carry things for the teacher, hand books out, stack the chairs and help move the tables. This is an exercise that can be incorporated into any child's daily sensory diet. Carrying heavy things, or pushing heavy tables, helping set up the P.E equipment can all contribute to helping feed that sensory input in an inclusive way.

Having a safe space in the school and home, a dark den, or sensory tent filled with sensory toys of choice can help calm a child who has been overstimulated. The trick is to not wait until the child is overwhelmed before using it because more than likely they'll be too far past accepting whats on offer. Instead if you can incorporate it into their daily routine and have this accessible at all times so the child knows that he/she can use at will and during set times then it can help massively with overstimulation.

These are all techniques that have been tried and tested and proved successful. They wont be successful 100% of the time. So if you're trying them and aren't making any progress then please don't give up. Be consistent, but allow the child to lead you, try not to push things on them, instead have them on offer, introduce them slowly, around the house and classroom, and keep changing things around. If its not working then try a different time, or way or with others too so that the child can see that everyone is included. For example, if you have a child who is 8, 9, 10? and they are aware of being different, then allow them a special friend to share their treat time. These techniques can used as rewards but it is very important that they aren't used as sanctions. Don't take away their sensory aids if they haven't been behaving appropriately. First and foremost they are being used for a reason and that is to lessen the stress and anxiety a child feels when overwhelmed. Not because they are being good!

My Lovely freind Nicki Perrins from Sensory Sensitive Mummy has kindly provided me with some beautiful pictures of her gorgeous daughter using her aids around the house. Some of which i didn't even know about. I find it great connecting with others that have children with Sensory issues because theres so much to learn from each other.

Thank you so much for reading, if you have gotten this far. Remember to go and check the rest of my sensory posts out, which are linked at the top of this page.

Share This Post With a Friend: