What does Hypotonia mean for Layla?

Layla was a pretty relaxed baby. We went through our stages like everyone else, but compared to Asher I had the dream baby. I just milked it all in, we had lots of cuddles and skin-on-skin time. She was affectionate and the most beautiful little girl I had ever seen! Layla rolled early, I was so proud and couldn't believe it that at a few weeks old she was already rolling onto her back from her tummy. She was then sitting up at 5 and a half months! I was so proud, but nervous, because I thought she was going to be an early walker and 1 toddler was enough for me at that stage!

But after then her gross motor milestones slowed down. Up until 6 months of age Layla would be so exhausted that she could only stay up for an hour. By 10 months she was scooting in circles on her bottom, but not able to eat any solid foods. Breastfeeding did not come natural to us and she was still causing me pain (and still is at 19 months) during each feed. She gagged on tiny grated pieces of food and refused most solids other than yoghurt. She couldn't eat any texture at all.

At 12 months Layla was still not supporting her weight on her feet. When you attempted to stand her up she would bring her legs up into a sitting position. She had never pulled herself up to stand and had only started crawling (using arms and dragging legs) a couple of weeks earlier. CYH referred us to a physio and a few weeks later we had our first appointment.

I was told then that Layla had Hypotonia (low muscle tone) and hyper-flexibility (she's double jointed!). She was unable to support her weight due to her low tone and the fact her ankles couldn't support her at that time because of the flexibility didn't help. The physio made some recommendations and asked us back in 3 months time to see her progress.

I remember driving home that day thinking, is she serious? Have they seriously given me another problem to deal with? I felt so sad for my baby. I googled it that evening and discovered that it made sense. Layla still to this day slouches in her pram, she just cannot support her weight while sitting up in that sort of chair for too long. It gave me a reason for all our struggles to breastfeed and to get her onto solids. I finally understood her better.

Layla started walking at 15 months. The physio was very happy with her quick progress. Weekly we attend Kindergym to help her gross motor skills. We practice fine motor activities at home. Helping Layla with her muscle tone has just become a fact of everyday life.

At 19 months she is doing so well. Walking, running, attempting to jump and doing some climbing. She is delayed a little with her gross motor skills, but the physio told us that she always would be. Layla loves to play outside and she also loves to draw and paint. Hypotonia means for Layla that she will tire sooner than others, that she will struggle a little more. But it won't stop her!

Successful Trip.

Those that have children with special needs will know what I mean when I say that a special outing out generally ends in meltdowns and it's just not worth it. Paul and I haven't planned anything since we went to the Zoo. Almost a year ago. Crowds set Asher off, noises, light, tall things, etc.

But recently we decided to try to visit the Farm Barn in Hahndorf. Today was the day. I packed his bag with his tools, his earmuffs (which did come out), his chewy, a fiddle toy, his sunglasses. We arrived nice and early and there were a few groups of people there. Asher did quite well to begin with, and once the farm show ended up being more of a talk about the history we took Asher out to meet some of the larger animals. He had a ball. Well, that's an understatement, he was in heaven. He pet the dear, watched the emus, met the ponies, saw a peacock show off. We headed back in after we noticed the other people had left. We had all the guinea pigs, bunnies, lambs, chicks all to our little selves. Asher was very gentle, he pet the animals again and fed them carrots. Both he and Layla had the opportunity to feed a lamb each a bottle of fresh cows milk from Daisy, who they had seen milked earlier.

But the most surprising, touching moment of all? When he gently cradled a guinea pig in his lap and held a carrot for it. My Asher, the boy who runs nonstop, doesn't understand what walking is, who jumps, bounces, runs full pelt into people, he sat on the stump of wood holding that guinea pig for at least 10 minutes, more like 15.

This mumma couldn't be any prouder.

Layla's Birth.

Layla Evelyn.
Born 20th March, 2010 at 8:45pm (40 weeks and 5 days pregnant).
7lb 1oz, 48.5cm long.
APGAR at 10 minutes was 9.

Friday was Asher’s birthday. I woke up early like I had been all week, I was struggling to sleep. We got Asher up early to give him his presents before Paul had to go to work. I felt period like cramps throughout the day, but it wasn’t until Asher was tucked into bed that I started getting some contractions. They weren’t strong or regular, but I warned Paul to go to bed early ‘just in case’. I went to bed at 9pm to get some sleep.

On Saturday I woke up at 5. I was really hungry and I just knew things were happening. I was having stronger contractions and began to time them while having a snack. By 7am they were between 3-5 minutes apart and lasting just under a minute. Paul was watching the timer and kept urging me to call the hospital. I did and the midwife said I sounded fine to continue labouring at home. It was the state election day, so Paul and I drove around to the local school to vote. As we were walking across the grass I would need to stop and breathe through a contraction.

Once home I decided to go and lay down and I put a hypnobirthing track on through the laptop to listen to while timing contractions. I used my pregnancy pillow to prop my belly on and wrapped my legs around it. Paul came to sit with me for a while, but I just wanted to be alone. My contractions were still 3-5 minutes apart and just under a minute long. I spent the morning like this breathing through each contraction as they came. I called the hospital again at around midday (Paul asked me to), who again told me stay home if I felt I could and to continue labouring there. I remember the midwife saying I was doing a good job and that she’d see me before her shift was over. My contractions were strong at this stage, but I knew I’d be better off staying at home where I was comfortable. Paul continued to check on me every so often, but I just wanted to be alone.

Around 2pm I decided that it was time to go into hospital. Paul called them and confirmed I was having to breathe through contractions. They told him to bring me in. Once we got there we were given one of the low risk rooms with a bathtub. The midwife asked all the normal questions. I didn’t feel at all comfortable on their beds so I kept moving to lean over a chair during my contractions. She said when I was ready we’d do a cervical check to see how far along I was. Between contractions I lay on the bed and gave her the go ahead. Once she was done she told me I was 3cm’s and my cervix was still high. I was heartbroken. She said she’d get the monitors on to see how baby was going, but she thought it was either false labour or really early labour and gave me some Panadeine to see if that made the contractions go away. Once she left the room I cried, I felt like I was a lot further along and I felt really silly. I still thought it was the real thing. After being monitored for an hour she sent us home saying my contractions needed to be longer and stronger.

Once home I felt really negative and headed to bed again. I gave up timing contractions and I felt really tired so I had a nap. I would wake up for my contractions and during that time I tried to drink a sip of water like I did with Asher to help distract me. I can tell you now it didn’t work! I didn’t feel like my contractions were changing, they felt exactly the same to me. I continued to labour on my own in the bedroom, I wanted it to be quiet and listening to everyone else getting on with the day really annoyed me.

After napping on and off for a while I woke up at one stage with the urge to push. I didn’t believe my body was pushing and I tried to breathe through the feeling. I started to panic, I didn’t know how to get everyone’s attention without pushing more. Thankfully Paul walked into the room at that stage (he later told me he was getting ready to watch a movie!). I quickly said to him ‘I think I’m pushing!’. He started to panic and said loudly ‘What?!’ before walking out quickly to ask my mum what to do. He called the hospital and my mum came and sat with me. At this stage I was on my hands and knees on the bed trying to breathe through the pushing feeling. Paul was advised to get me to the hospital now. He asked if I could go in the car, to which I replied ‘NO!’, so he called an ambulance. The pushing feeling got stronger now and I let my body go. My waters broke and I felt like I needed to go to the toilet, so I jumped off the bed and ran into there. I pushed once while on the toilet crying out and felt between my legs, I could feel her head. I think I was crying at this stage, I was terrified and everyone around me was panicking. I pushed again and I felt my baby slide out, right into the toilet.

Paul was on the phone to 000. My mum picked the baby up out of the toilet and I got on my hands and knees in front of it. There was a lot of blood and I kept asking ‘Is my baby ok? Is she ok?’. She didn’t cry for about half a minute, but it felt like a lifetime. Once she began crying I felt my whole body relax, Paul had grabbed towels and mum wrapped her up. The person he was speaking to advised me to roll onto my back and to have the baby put on my chest for skin to skin contact. It was a bit difficult, but we managed, right there in the corridor. I had no urge to deliver the placenta at this stage. Paul was massaging my tummy to help with the bleeding and I was advised to offer the baby the breast, but I had no idea what I was doing.

The ambulance arrived 10 minutes after she was born. One of the ambulance workers checked the baby and the other checked me. They clamped the cord and Paul cut it. The entire time they were talking to me and helping calm me down, they asked what the babies name was. I replied ‘Layla’ and they said it was a beautiful name. They checked my bleeding and asked Paul to put a nappy on Layla. Once that was done mum helped me put some clothes on and they moved me onto a chair and took me outside. I was then put on a stretcher and moved to the ambulance. I could see some of the neighbours standing out the front watching what was going on.

Layla was put on my chest again and we drove to the hospital. I was having some pretty bad cramps again, but I wasn’t ready to deliver the placenta. I ended up taking some pain relief (Morphine) and 5 minutes later I delivered the placenta in the back of the ambulance. We also stopped at one stage to check babies breathing (which was perfect).

Once at the hospital we were moved into the same room I was allocated earlier. Midwives came in to see how I was, I think I was a bit of a novelty. The midwife looking after us encouraged some skin on skin bonding time and Layla and I stayed this way for about an hour, she had a feed during this stage as well. I think it was what I really needed, I was extremely upset about how things had turned out. Afterwards the midwife checked me for tears, I had a few grazes and a little tear but nothing worth stitching. Layla was weighed and measured and then we were left alone again to get to know our beautiful baby.

Overloaded.

During the school term we go to Kindergym. We go for both children, to help with their low muscle tone issues and to help Asher get some of his beans out. Today was our first day back after a two week break for school holidays. We started preparing Asher for it yesterday, telling him we would be going today. His face would light up while talking about it.

Once there he was so excited. When it was our groups turn he ran in and instantly started following an obstacle course. One of his little friends arrived not long after that and Asher was in his element. At one stage they do a group time. The children do some movement games while the instructor uses a microphone so everyone can hear her. We know that sometimes this can set Asher off and we are sure to sit on the opposite side to the speakers.

Today was a bit different though. He was reluctant to join in, he just sat in my lap watching. I sang and tried to encourage Asher to do the actions. Finally I looked down and I noticed he was biting himself - a sure sign that he was having a sensory overload. Instantly I removed him and we rushed over to our bag. I had packed his 'chewy' and Asher quickly started biting down on it and we used a weighted product in his lap. He asked for his ear muffs, which I had typically forgotten. He was able to calm a little and wanted to join back in and play with his friend.

We avoided a full blown meltdown, which I am so thankful for. But over an hour later I could still look at his hand and see the little bite marks. I'm trying to not let myself feel too guilty, so instead I have decided to put together a little bag of goodies to leave in the car that will help him while we are out. Why didn't I think of this earlier?

Preventing a Meltdown.

Today Asher started getting a little silly. He began throwing toys, running into things, jumping on the spot and pushing his sister and his dad. Instantly we knew how to help him. Paul encouraged Asher to sit down, we put the TV on and placed his weighted blanket over his lap. A few minutes later Asher had relaxed - crisis averted! He was even able to answer with a 'yes' when Paul asked him if he felt funny inside.

6 months ago this wouldn't have happened. We didn't know how to help him then and didn't recognise the signs of a sensory overload. His behaviour would have escalated. Someone would have got hurt, Asher would have been told off and a full blown meltdown would have happened. A meltdown that could last an hour and a half.

So what have we got in place to help him? We follow a sensory diet daily, Asher goes to OT once a fortnight. We have a 'fiddle box' full of sensory toys for him to explore. We've bought a weighted blanket and snake (called Cedric!), earmuffs, chew toys. We make sure that when we go out we take some of these things with us. Not every situation like the one I described earlier ends so well, but we are so thankful that we have learnt enough so far to help him, even just that little bit.

What is Sensory Processing Disorder?

So what exactly IS Sensory Processing Disorder? A lot of people ask me this question and I've found it really hard to explain. This is from SPD Australia;

"SENSORY PROCESSING DISORDER (SPD) is a complex neurological condition that impairs the functional skills of 1 in 20 children. People with Sensory Processing Disorder (SPD) misinterpret everyday sensory information, such as touch, sound and movement. They may feel overwhelmed by sensory information, may seek out sensory experiences or may avoid certain experiences.

People with SPD experience their world as either Hypersensitive (over reactive, sensory avoidance) or Hyposensitive (under reactive, sensory seeker). They may also present with motor skill problems. They may react with strong emotional behaviours and experience what may be described as ‘melt downs’.

The brain and nervous system receive input from body parts as well as from the outside world. The central nervous system is also a means of transmitting messages throughout the body and functions somewhat like a computer system. The messages that are transmitted, however, affect functions such as muscle movement, coordination, learning, memory, emotion, behavior and thought. As with a computer, a breakdown or malfunction in one part of the system often affects other functions of the system.

Sensations from hearing, vision, taste, smell, touch, pressure, and movement provide the input to the brain which is organized for movement, cognition and learning. The richness of the sensory environment and the interactive experience of the individual with the environment contribute to optimal development of function.

When there is a Sensory Processing dysfunction, it is hypothesized that the brain does not process or organise the flow of sensory impulses in a way that gives the child precise information about themselves and their world.

As a result, learning can be difficult and children may feel uncomfortable, or have difficulty coping with the stress of daily sensory and organizational demands. This often results in additional or behavioural difficulties."

So what does this mean for us? It means Asher doesn't like loud noises, vacuums send him hiding under the table, crying hysterically with his hands over his ears. Hair washing can cause him to vomit and self harm. He doesn't like shopping centres because things are too tall, too loud, too bright. He has frequent meltdowns. He needs time to un-wind and is limited with the amount of stimulation he can handle in a day. He needs help to regulate his senses. We need to follow a 'sensory diet' to help give him the sensory input he craves on a day-to-day basis. He needs extra help trying new things, with play and learning how to control his body.

But you know what? He's a happy, bright, beautiful little boy who doesn't understand the words 'too loud!'. He loves to run and bounce. Asher is affectionate when it suits him, as long as you know just how to give him the right type of hug! He enjoys outdoor play. Dora the Explorer is his current favourite TV show, followed very closely by Diego.

Asher is a very special little guy and I am so blessed to be his mumma.

About Us.

Welcome to the blog!

My name is Tara and I am a mum of 2. I'm 26 and live with my husband and two children in a suburb of Adelaide, Australia.

My first child is Asher, who is 3 years old. Asher has Sensory Processing Disorder and Receptive Language Disorder. He is currently in speech therapy and occupational therapy, both of which he does fortnightly. He also attends a specialised day care. I plan to write a bit about how we help him.

My second is Layla, who is 15 months old. Layla has Hypotonia and is hyper-flexible. She has currently caught up with her gross motor skills, but we will be seeing a paediatrician next month for further testing to see if we need to investigate the reasons for her hypotonia.

My blog is about my children and their special needs, our day to day life and what we do as a family to help each other and help both children grow to be the best they can be.