I do alright and like most parents of children with special needs I receive many compliments on my ability to keep going and the strength I must have.

I do keep on going yes and strength is undoubtedly something I have in my arsenal but it isn’t just within me, no!

My strength comes from all around me, my tireless husband who despite everything we have been through demonstrates every day his love for me and for his children.

Seeing him managing our budget and preparing meals, carefully balancing the books and working hard to ensure he is around when we need him.

I draw strength from him because I want him to be proud of me as I am proud of him. I love him and I feel his love.

My friends, they just know me. I am strong because I know at times of weakness they’d be there like a shot (probably holding a tray of shots).

I know it’s OK to cry and I do… lots!

But on the rare occasion that I do my hair and make-up for a fun night out with the girls there’s a stubbornness in me that refuses to go down the route of crying in the toilets and emerging blotchy and red eyed!

My big girl, my six year old makes me smile with her mature attitude to life. She was four when her brother and sister were born at 24 weeks.

Extreme prematurity affects siblings, there’s no way round it. For months she either attended daily visits to the two separate hospitals or stayed with grandparents or friends.

Her normal was in no way normal, but she enjoyed her special jobs of delivering my breast milk to the nurses and singing to the babies through the incubator doors.

Even now she is caring and kind to her brother and sister. Hair pulling and tantrums don’t phase her. I am strong for her because I want her to have countless fun and positive memories of her childhood.

It goes without saying that the twins give me strength, they don’t know how fortunate they are, how close we came to losing them.

It’s impossible for me to describe our NICU days, I’ve tried but I really don’t have the words yet. Suffice to say both babies were extremely poorly.

Miraculously M, my little girl is now medically well and developing steadily. Sadly T, my little boy suffered grade 4 bleeds on his brain which has lead to him developing Hydrocephalus, Cerebral Palsy, Cortical Visual Impairment, some hearing loss.

It is fortunate that he knows nothing of any of these medical terms and thoroughly enjoys every minute of every day.

Both twins exude happiness and a joy of life which is infectious and precious. I know how quickly these early years will become memories so I am determined to relax and enjoy them.

Parents, I am lucky to have three sets of parents including my In laws, Dad, Stepmother and Stepfather.

Just over a month ago though, I lost my Mum. Crash! There’s a massive void in my pool of strength now. I can’t fill it or replace her, I miss my mum like a lost limb and there’s no way to ease the pain.

I am weaker now than I have ever been and it shows. I see it in the mirror; my husband senses it and the kids must feel it too.

Hence, this blog. Can I draw strength from sharing my feelings?

Will this help?

I don’t know but I do know I enjoy reading other people’s blogs.

Maybe someone will be able to draw strength from this… I hope so.

Jo x

One of the current ‘Buzz’ phrases in special education at the moment is ‘Remove barriers to learning’.

Now, a barrier to learning in my mind might be anything from a bad night’s sleep to a severe visual impairment.

If your child is faced with barrier upon barrier; physical disability, multiple sensory impairments, tactile difficulties and maybe even more… where do you start?

What I can do

My suggestion would be to start with what your child can do, even if their major movements or actions are involuntary.

We all begin learning using trial and error and by introducing some level of reward associated with a child’s movement, vocalisation or action there is the opportunity for incidental learning.

• Leave a set of car keys next to my most mobile hand on my tray/knee/arm rest.

• Position something dangling next to my head.

• Lie me on a space blanket

• Place a sound to light toy in my line of vision against a dark background

Offer me variety

Think texture, many of your child’s toys will be made from plastic, no matter what shape they are (banana, tea cup, square) to a child who is relying on their sense of touch they will feel much of a muchness.

Consider a crawling baby moving around your house and the textures he/she would encounter, the edge of the rug meeting the hard wooden floor, the dangling curtains and the cool slab of stone at the edge of the fireplace.

Be creative, be a magpie, create baskets of various textures, sounds and smells.

• Use a kitchen roll holder to hold various textures, wooden, metal curtain rings (eyelets removed) Crochet hoops, sparkly bracelets etc.

• A big shiny balti dish makes for a great backdrop to anything sparkly or flashy and beads dropped inside will make a lovely noise too.

Keep it consistent

Keeping some things the same within a daily routine will offer a child the opportunity to understand and possibly predict what is about to happen, these can be known as ‘objects of reference’.

• Position a spoon (or syringe if more appropriate) in my hand at meal times.

• Allow me to hold a nappy as I am being changed.

• When getting ready to go out, give me a shoe to hold.

• About to go into my standing frame, make the velcro noises with my leg splints.

Repeat, repeat, repeat!

If your child is likely to let go of, throw or swipe objects away then continuous play can depend on how much time and patience you have to continue to pick up and return toys and objects.

Make life easier for yourself and attach a selection of toys/objects in the same, fixed position for a period of time so that your child has the chance to remember, show preference and maybe make an independent choice.

• Use a simple clothes rail to dangle a range of toys and objects at a reachable distance above my feet, hands or head.

• Attach a range of materials of various textures to the inside of a bum bag using elastic and ribbon so I can reach down and explore when out and about.

• Use a simple clamp to position sensory toys onto my tray so I don’t knock them off by accident.

• Actively watch me for a short period of time to see if I show any preference or avoid an item. I use these strategies and resources (amongst many others) to ‘Remove barriers’ in my classroom on a daily basis and my son who has profound and multiple learning difficulties benefits from them also.

I hope this helps you to bring the world to your child and have some fun doing it too!

Enjoy, from Jo and Thomas!