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Posts tagged ‘autism’

Update

It has been a few months since I wrote my last blog about the boys. Tbh I have been really struggling with my mood and keeping my game face on. Took a while to realise it just isn’t possible to do it all, so prioritising the boys and work I took the spare moments I would usually use for writing my blog to just have 5 mins, Practice my Soothing Rhythm Breathing and attempt to be less critical of myself in the process. I have been using the compassionatemind.co.uk website and I have found it to be a massive tool I have used to help me remain calm and grounded.

The boys have been full of mischief as usual. Out of the 4 places on offer for special education nursery provision in North Lanarkshire my boys were very lucky and were allocated a morning space each. They start Clydeview Nursery in Motherwell in August and will be there for 2 years until they start primary school. I am hoping this will be the game changer in their development progress. Already since May I have seen such a difference in not only Lewis’ speech development but also Logan’s. it is so so cute hearing Lewis shout ‘again’ or ‘my turn’, in the morning waking up to Logan shouting ‘ewis where are you?’

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Memories

Having a look at my Facebook and the memories pop up. Sitting here in tears yet again. Last winter was a particularly brutal winter for my preemie friends. At the time Logan’s chest had also been very bad and all my anxieties were heightened. This winter – touch wood, has been better for our family in regards to chest infections, although I would say Logan has had his fair share of illness earlier on this year with him having RSV, turning blue going limp needing to be 999 rushed to hospital in an ambulance and having nebuliser and oxygen therapy in March. The post I wrote is written below:

I honestly thought wow today was tough with my boys. But I have just learned that a preemie warrior just like them has passed away and grew their angel wings. I would take today’s sickness tantrums and random scream hysterical crying times a million just to make sure my boys stayed here with me. Puts life and our supposed struggles into perspective. There are too many families not spending Christmas with their babies. Some I know personally some have become cyber type friends via preemie support groups. I cried today and felt like I wasn’t coping as well as I should but there are families crying for more serious problems than mine.

“Tonight I came to bed to find my boys snuggled up like this and I cried again. Not because I was sad or stressed but because I realised how extremely lucky I am to have these 2 amazing fighters to kiss and cuddle good night.

I love my boys more than words can ever describe.

Also I should add before any bashing begins that I did move Logan’s leg away from his brothers neck.”

The last few months have been hard for us in other ways. Extreme tantrums due to the boys lack of understanding and social communication skills. The paediatrician putting it in black and white that Logan more than likely is on the autistic spectrum and for tests to begin next year. Yet again however, seeing this post pop up on my memory feed has brought me back down to earth with a bump. At least I still have my boys with me happy, mostly healthy and more importantly alive! Mums of angel babies would give anything to have their gorgeous babies back here on earth and in their arms dealing with whatever life throws at them.

I can’t reiterate enough how lucky I am to have these 2 amazing warriors clinging to my side fighting over who is getting cuddles from me everyday. No matter what life throws at us and how bad we feel we have it, it is important to remember there are people out there who are going through worse. We all have our own journeys to face but remembering those angel babies for me is a priority.

Sending prayers and hugs into the universe for those babies we never got to meet or were taken away from us far too soon. Also, praying for the families here on earth they left behind.

Scottish Twin Mamma.

Xxxx

Extreme Prematurity and risk of Autism Spectrum Disorder (ASD)

Every parent worries about the risks of ill health to their unborn or newly born child. In fact, at 35 years old I’m pretty convinced that my parents still worry about my health and now of the health of their grandchildren. My GP informs me new mothers make up the bulk of their emergency appointments due to their child just not being quite right or being off some how. Rightly so, the new mothers seek medical advice to put their worried minds at ease.

Since the boys were born at 25 weeks gestation I have had my own and very personal set of worries on my mind. It started with the immediate health worries. First and foremost with Lewis and/or Logan survive the next hour,day or night. This happened on so many different occasions whilst in the NICU it almost seemed to become the norm. When we got home from the NICU the boys were still oxygen dependant and remained that way through out the winter months fighting off the usual winter bugs such as chest infections and the Noro virus, however, with possible deadly consequences for my boys.

As the boys have went from physical strength to strength there has always been this niggling worry that their neurodevelopment May be delayed or indeed impaired. As science has progressed, the survival rates for premature babies has dramatically increased especially among the smallest and sickest babies. Studies show that when survivors of Prematurity reach school age they are 50% more likely to exhibit signs of significant higher order neurodevelopmental impairment. This includes difficulties in learning, behaviour and executive functioning often requiring additional needs and special education support. Recent reports go on to suggest that this increase in atypical socio-behavioural functioning in the premature survivors population is strongly suggestive of Autism Spectrum Disorders (ASD).

According to the NHS website Autism spectrum disorder (ASD) is the name for a range of similar conditions, including Asperger syndrome, that affect a person’s social interaction, communication, interests and behaviour. In children with ASD, the symptoms are present before three years of age, although a diagnosis can sometimes be made after the age of three. It’s estimated that about 1 in every 100 people in the UK has ASD. More boys are diagnosed with the condition than girls.

There’s no “cure” for ASD, but speech and language therapy, occupational therapy, educational support, plus a number of other interventions are available to help children and parents.

Some children with ASD need to stick with routine as even the tiniest of changes can trigger tantrums, some children may engage in repetitive activity such as turning light switches on and off or neatly lining up their toys. A massive worry I have personally is even though the professionals are concentrating on Logan as they believe he has ASD Lewis also exhibits these symptoms as well. Many children with ASD also can go on to be diagnosed with ADHD or Sensory Perception Disorders.

The reason, I have found in articles that links ASD and Prematurity so strongly is that the brain develops best in the womb. When the child is born extremely early such as before 28 weeks the brain development is altered and almost wired differently to that of a full term child. This is due to the child being exposed to so many stressors during a critical stage of development. Researchers go on to explain that although ASD is not a curable condition early intervention with speech therapy, OT and behavioural/education support we can help our children move more into the mainstream of society.

Early signs of autism to look out for in babies and toddlers are:

If your baby or toddler doesn’t:

• Make eye contact, such as looking at you when being fed or smiling when being smiled at

• Respond to his or her name, or to the sound of a familiar voice

• Follow objects visually or follow your gesture when you point things out

• Point or wave goodbye, or use other gestures to communicate

• Make noises to get your attention

• Initiate or respond to cuddling or reach out to be picked up

• Imitate your movements and facial expressions

• Play with other people or share interest and enjoyment

• Notice or care if you hurt yourself or experience discomfort

I’m sure this is a topic I will go to familiarise myself with and write more about. However, if anything I have written has struck a chord with you in regards to your own child then I would advise contacting your GP or health visitor. Whilst it is important to remember all of our children develop at different rates so some children may take longer to sit up unaided walk, talk or meet their developmental milestones I have found parental instinct can also be key. You know your own child and if you feel that there is a possibility that the delays your child are experiencing aren’t normal then it is best to seek medical help and take it from there.

I hope and pray that my children grow up to be healthy and happy individuals. We will deal with whatever the universe throws at us. The only one thing I know for sure is that I love my children more than anything in the world and no diagnoses of ASD or similar conditions will ever change that. The research does show that there is a massively increased risk of ASD among pre-term children. But that is all it is. It is not a definite diagnosis, it is a risk. At the end of the day our preemies are warriors and they will continue to beat all odds and surprise us at every step of the way. Nothing will change that. Just as nothing will stop us as parents fighting for our children and loving them unconditionally.

Stay cool.

Scottish Twin Mamma

Xx

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