The Big Red Button

It started when I was at university, one night a group of my friends and I were sat around the table in our flat putting the world to rights and someone out of the blue, asked a huge question... "If there was a big red button in the middle of this table and you could press it to change your life, would you press it and what would you change"? When it came to my turn to answer I think everyone (including me) expected me to say "yes I'd press it and make myself completely mobile and pain free" but to my complete surprise, when faced with the thought of my life being potentially unrecognisable, my answer came "I really don't think I would press it". My friends asked me to explain my thought process and as I've been thinking about this again in recent weeks, here goes....

When I was younger I had aspirations to be a dancer and go to stage school. Looking back now I feel so sorry for my poor Granny who had the unenviable task of sitting me down around age six to explain that a career as an Irish dancer probably wasn't within my reach and the reasons why. (I think I really just wanted a nice dancing dress but that's by the by).

During my school years I choose subjects, not necessarily the ones I was best at, but the ones that would best serve me for future employment (or so I thought, but that's a story for another day). From then on came the sequence of events that have made me who I am today; the course I studied at university, my choice of accommodation there, the friends I made etc. I am a firm beleiver in the saying that everything happens for a reason, so therefore I also believe that I am, right now, exactly where I am supposed to be.

If I did press the big red button, who knows, I may have become a dancer or gone to stage school. If that had happened, I'd have a completely different circle of friends and maybe even an entirely different family, I may not have met my husband and I almost certainly wouldn't be Momma to Starfish, so no thank you, you can keep your big red button!

Don't get me wrong, there are days when I wish I could just get into bed, pull the covers over my head and have a giant pity party but they are few and far between. Maybe we can't choose the cards we are dealt in life but we can definitely choose how we play them. We are the only masters of our own destiny so rather than thinking "why me?" each day I face a challenge, I think "Ok, what am I supposed to learn from this?" The fact is, I have to take life at a slower pace sometimes for many different reasons and I litterally see things from a different vantage point (not least because I'm only 5ft tall) but this gives me time to appreciate things that I may not even notice otherwise.

As Starfish's mum, I do sometimes worry, what if having me as his mum makes him feel embarrassed or means he gets bullied at school? But then I check myself and realise that it's down to me to raise him knowing that our physical bodies and their limitations do not define us. I want to raise him to embrace diversity and to be stong enough to respectfully challenge anyone who tries to torment him.

I really believe that Starfish already has some awareness that Wheelie Momma approaches life from a slightly different angle and he has adapted so we can grow together. He can arch his little back and hold his body in ways that make it easier for me to lift him. If he drops a toy and sees me try and fail to pick it up for him, he calls out for his Dad to help us! He even knows to sit very still on my lap when I'm holding him with one hand and controlling my chair with the other.

All in all he's a smart little cookie who has taught me many lessons already and no doubt will continue to do so. My hope is that I can continue to nurture him in every sense and that he will be as proud of his Wheelie Momma as I already am of him.

It's a Starfish Thing....

It's mind bending how quickly Starfish is developing his personality and how fast he's growing... I'm pretty certain he's been here before and he knows more about this parenting lark than we do, he's just testing us!

At around 8 weeks old he was sitting in front of us in his bouncer seat while I read a book and his Dad flicked through the paper. Starfish wasn't having any of not being the centre of attention and literally erupted in sobs complete with dropped lip, the works. We both instantly looked up from our reading and jumped to attention. Starfish on seeing that he had a captive audience again and all was right with the world, immediately pulled in his lip again and beamed with delight, not one tear in sight! A PHD in emotional manipulation at just 2 months old.

This "fake cry" still continues today; usually after the last feed of the day when we put him in his cot but he decides it's not quite time for last orders just yet. He lies on his tummy in the cot (usually across it rather than the correct way up, peeping through the bars) He buries his head in the mattress and 'sobs' for a few minutes. Here's the interesting bit though, every few seconds he manages to magically compose himself long enough to peep out and see if the display is having the desired effect on his Dad and I. It's honestly Oscar worthy! Then when I relent and say "Ok one more feed" He smiles and sometimes even laughs, right in my face! It's like he knows those big blue eyes are irresistible and is thinking "I'm going to play you like a banjo Momma."

The first time he saw me walk alongside his Dad while he carried him in his sling; he smiled and gave me a knowing look like he was saying "Check you out Momma, walking, that's new!"

Then just a few weeks ago, I was exhausted after a particularly sleep deprived few nights thanks to teething (Starfish is teething, not me). I was in the bathroom washing up before bed while Dad got starfish changed. Knowing how exhausted I was and that this leaves me prone to stumbling or worse, hubby kindly said "When you're ready let me know and I'll come and help you" When I was ready, Starfish decided he was not being left in the cot under any circumstances; this meant hubby had to once again be Super dad and hold Starfish in one arm while helping me walk back to the bedroom at the same time. To do this we have a nifty little Team Starfish dance which involves hubby walking backwards while I walk towards him and Starfish. This time however was slightly different in that it must have been the first time that Starfish really looked at what was happening. When he saw me move towards him with my wobbly gait and more specifically the way my head was moving, he decided I was funnier than any cartoon or tickles and literally doubled over laughing! We thought at first it was a co incidence; surely he's not laughing at me walking? So I stopped for a few seconds then started moving again. Right on cue, as soon as I took another step he erupted in a giggling fit again! and so he continued until we'd reached the bed.

I asked myself, should I be a bit upset or offended by the fact that he's laughing at me? Ha! Of course not. I hope he's always as easy as that to cheer up and make laugh. Now if he's in a mood or if we just want to hear his beautiful giggle we just shake our heads from side to side and say "wobbly head" and he obliges with a chuckle that makes our heart's soar.

Pretty much everything happens on Starfish's terms. We are using the principles of Baby Led Weaning to introduce Starfish to solid food. Well, that was our intention at least, Starfish has other ideas. The ethos of BLW is that baby feeds themselves but bringing the food to their own mouth and exploring the feel, texture and taste for themselves. Starfish is quite happy to eat absolutely anything, from fruit to curry or bolognese but his version is "why would I waste my energy holding food up to my mouth myself when I can summon the parents to do it for me? Yes I'll nibble the strawberry, banana or pasta happily but if you think I'm holding it, you better think again." Interestingly he applies the same logic to his teething rings and sippy cup but he'll happily grab the TV remote and press buttons, especially if there's something on I'd really like to watch.

We're slowly coming to terms with the fact that we are now lodgers in our house and Starfish has firmly established himself as the boss, which is fine.... but I really need to find a way to deter him from gnawing on the wheel of my wheelchair!

Answers on a postcard please.......

Cuddles to Go

Any inventory for expectant parents will include a pram or pushchair.... unless you’re a Wheelie Momma, in which case another set of wheels to negotiate is the last thing you need! Even less so for my other half who already has arms like Popeye from pushing my growing mass around in my wheelchair while I was pregnant. Similar to Mark Darcy telling the pregnant Bridget Jones she was "immense" as he carries her to hospital; just nowhere nearly as romantic (but every bit as funny).

In true Wheelie Momma style I began to research alternatives to prams for carrying Starfish before he was born and I was introduced to the amazing, cuddly world of baby slings and carriers. I've since lost count of the many hours I've spent drooling over the vast array of different types of carrier, not to mention the exquisite fabrics and stunning designs and patterns.

We were fortunate in that there is an amazing lady, Beth; who is a baby carrying consultant and has a shop near us. I made an appointment with her during my pregnancy and she was superb in going through all the different types of carrier with us to find options that would suit both our needs and our budget.

We opted for a "stretchy sling" and a "ring sling" both have different benefits and distinct characteristics but essentially they both allow you to "wear" your baby acting as a type of kangaroo style pouch.

The slings have been such a revelation for us. I can put one on (especially the stretchy wrap) in the morning when I'm getting dressed and can keep it on all day if necessary. It's not bulky or awkward and just looks like a shawl or scarf. There's a bit of a knack to wrapping it at first but under the consultant's expert guidance we got some practice in advance and we soon got the hang of it.

The slings mean that even as a newborn, when we went out and about in my chair, Starfish was safe, secure and snug in on my chest and I had full use of both my hands for other tasks. Starfish loves them as he is close to me at all times and can enjoy skin to skin contact and hear my heartbeat similar to in the womb. This helps him sleep when out, he's less windy in that upright position and the skin to skin helps keep his temperature and heart rate regulated. As well as this, my arms don't get tired, I can shop, eat or drink and all while getting squishy cuddles on the move. What's not to love? I can even feed Starfish in the carriers and they act as a cover too so we don't feel too exposed..

Starfish loves sling cuddles with his Daddy too and it's been a great conversation piece with people stopping them in coffee shops to ask more about the sling and how it works etc. This of course opens the way for the proud Dad to show off his first born at the same time.

So far we have 3 carriers in our collection and I already have my eye on a few more when Starfish outgrows the stretchy. (or when I find the best pattern to match my favourite outfit, whichever is sooner!) Best of all, even if I was to buy a different carrier for every week of the year, I'd still spend considerably less than the cost of the average pram, some of which are more expensive than a decent second hand car!

The perks of being a Wheelie Momma

For information on the different carriers available, to purchase your own or book a consultation visit http://www.lovetobenatural.co.uk/ If you speak to Beth, tell her Wheelie Momma sent you and she will look after you very well x

From The Hands of Babes

Have you ever wondered what’s going on in your little one’s head? Or said to yourself when they were crying “I only wish they could talk and tell me what’s wrong”? So have we... that’s why we were delighted to hear about Sign 2 Music.

Sign 2 Music is a fascinating concept based around British Sign Language (BSL) which teaches your baby basic signs through song and rhyme. When we first mentioned to family and friends that we were doing Sign 2 Music with Starfish and we described it as Baby sign language; the first response was usually “But he’s not deaf” and next came “Won’t that delay his speech”.

I’d done my research however (as I have painstakingly before every parenting decision we’ve made so far) and I was confident that it was something that would improve and encourage Starfish’s communication skills rather than delay them.

A number of doctors in USA began research as far back as 1970 when they found that children of hearing impaired parents could communicate their needs and desires at a much younger age than children of hearing parents. The difference here was the exposure to signing so they began to explore the impact of signing to hearing babies of hearing parents. Studies showed that babies exposed to signs at 6-7 months old began to communicate at 8-9 months old but at this point they lack the physical ability to speak, tongue, mouth and jaw muscle control. Signing improves this and has also been proven to give babies a more sophisticated grasp of language than their peers.

Another study showed that on average signing babies had a higher I.Q (as much as 12 points) and a greater interest in books. Signing children are also proven to have a wider vocabulary than non signers; this is thought to be because words are presented verbally and visually at the same time.

I’ve seen so many babies and toddlers have tantrums and get frustrated trying to communicate when adults don’t have a clue what they are trying to say, I’ve actually been the clueless adult on more than one occasion! This can be heart wrenching for both the child and the adult.

We didn’t need any further convincing; we made enquiries about classes straight away!

So that’s the science, how does it work in practice?

As Starfish was still quite young, I was delighted when we contacted Roberta and she said we could have a private course in our own home.

Roberta arrived with her trusty assistants Signing Sandy and Daisy Doggy (signing puppets), shakers and Sandy’s little bag of sign cards.

The first lesson we learned essential signs like Baby, Milk, Food, Drink Change Nappy, Change, Help, More and Bath. Next we learned family signs, Mother, Father, Brother, Sister, Granny etc

All this learning happened to songs (and yes we did have to sing along) while Starfish looked at us like we had lost the plot. 

Daisy Doggy was a huge hit `however and he even had a brief go at one of the shakers.

The key to success with signing, as with all child development; is consistency and routine. From day 1 of the course, we started using the signs for milk, help and nappy change.  We say “let me help you” while signing help. Then “nappy time” with the sign for change nappy and “milk time” with the sign before each feed.

Starfish watched our hands move with interest and waited for what came next. Within just a few days he obviously started to recognise what the signs meant along with the words we said. For example, if he needed a feed and I said “milk time” or “food time” with the signs he would be calm while I prepared us both for the feed.

Over the next few sessions we learned meal time signs including “more” “full up” and various different food signs, signs for emotions, sad, happy, worried, angry, morning and night time routine signs such as “sleep”, “bed” “get dressed” “bath” etc. We also learned animal signs and many more such as “which”, “where”, “hot” and “cold”

All this happened through song, most of which were popular nursery rhymes or to the same tune as popular children’s songs. Starfish’s favourites are Baa Baa Black Sheep and Miss Polly had a Dolly.

After the second session, not only was Starfish watching our hands intently when we signed but he had started wiggling his own little fingers as if he was trying to copy us! He hasn’t yet managed his first sign himself but I’ve no doubt it’s not far away. He definitely understands the basic signs now and knows what to expect when he sees them.

Now that we are embarking on our weaning journey we have plenty of opportunity to introduce more signs and words to Starfish which I know he will enjoy.

Santa even brought Starfish his very own Daisy Doggy and Sign 2 Music CD which he absolutely loves

Daisy Doggy

The Sign 2 music classes are great fun for parent and baby alike and can be taken in a group setting or on a one to one basis. They are a great value for money and a very worthwhile investment in your family’s future. Not least for the time you could save by mot having to ask your child to repeat themselves 20 times before you finally figure out what they’re trying to say or the money spent on hair dye to cover the grey of sheer frustration.

If you want to know more about Sign 2 Music or to enrol in a class in your area visit http://www.sign2music.co.uk/ or find them on Facebook https://www.facebook.com/sign2music1 or Twitter https://twitter.com/sign2music

Our Lottery Win

Thanks to our Health Visitor and fabulous Mary from SureStart going over and above to help and support our family, doing hours of research along with us to see what, if any support exists for families in our situation, we eventually struck gold a few weeks after Starfish was born. Mary found an amazing charitable organisation called Remap NI.

Remap is a national charity working through local groups of skilled volunteers to help disabled people achieve independence and a better quality of life.
They do this by designing and tailor making equipment for their individual needs. This helps them carry out essential daily tasks without having to ask for assistance, or take part in leisure, work or sports that would otherwise be impossible for them as the equipment they need is not commercially available.

Mary wasted no time in getting in contact with Remap NI and spoke to Victor, giving him a brief outline of our plight and the type of help we needed. Very quickly it was agreed that Remap NI were exactly the right people to help us and a date was set for Mary and Victor to visit us at home to discuss everything in more detail. The night before the meeting I went online to look into Remap NI a bit more. When I read some of their case studies and saw the custom made solutions they came up with I was beside myself with excitement. Even before I had spoken to Victor myself, I had a sense that this meeting would be life changing for Starfish and I.

On the day of the initial meeting we all sat in our living room and Victor asked me a bit about Starfish. I could tell by the questions he asked and the genuine warmth and enthusiasm he showed for my answers that he really cared and wanted to do his best to help us. I started to explain what we had experienced to date and why he had been called upon for support but he responded that I didn't need to justify why I needed the help and that it was completely natural that I as a mother would want to be fully involved in every aspect of Starfish's upbringing. I wanted to hug him on the spot! Someone else got it, another member for Team Starfish, who knew what could be possible now.

Victor asked me to talk him through our daily routine, what I did with Starfish, what his Dad did with him and what I'd like to be able to do with him that I couldn't yet be involved in. As I went through everything Victor listened intently and made notes. He then went a stage further and started drawing sketches of potential solutions to the physical barriers and challenges we had. It was agreed that we definitely needed a changing station where I could get in close to Starfish while in my wheelchair and a means of lifting Starfish out of his cot safely and moving him over onto my knee and vice versa. I couldn't believe it when Victor said these 2 things would be relatively easy to achieve. He even went on to discuss a potential pulley system style lift to facilitate floor play with Starfish if he and I were in the house alone.

That may seem like a blasé comment "if Starfish and I were in the house alone". You're thinking, all Mum's can be at home alone with their babies, right? Wrong! Because of my physical limitations and the fact that the standard cot, etc that we had didn't enable me to lift Starfish unaided safely and complete tasks like feed and change him, I had to have someone in the house with me at all times. In the early weeks, if Starfish was sleeping in the Moses basket and woke up hungry; there was physically no way I could safely lift him out of the basket and onto my knee to feed him completely by myself. It is extremely disabling, frustrating and humiliating at 34 years old to effectively need a baby sitter yourself so you can care for your own newborn. Family reassured me that as he grows, Starfish will be in tune with my physical limitations and will quickly adapt to this so we can work together to achieve things. I have no doubt whatsoever that will be true, however the feelings of guilt, frustration and sheer inadequacy in those early weeks were overwhelming.

After the initial meeting with Victor we had some follow up emails and a few more meetings for measurements etc. We decided that the best solutions were to adapt the cot we already had which my friend had gifted us and make a new changing station from scratch. I should point out again in case you missed it earlier, Remap NI is a charity made up entirely of skilled volunteers. They don't charge for any equipment they make and rely solely on donations. The idea of getting custom made furniture for Starfish, not only that didn't exist commercially but likely if it did, it would be so expensive that it would be completely out of our reach, just blew me away.

Victor showed me a YouTube video of a mum in the United States who was a wheelchair user with 2 babies, she had a customised cot for her youngest baby and he thought a similar solution might work for Starfish and I. This involved raising the cot up on extendable legs to make it level with my knees when I was in my chair. Next, rather than the side of the cot dropping down as it did already, they could make a hinged door at one side, big enough for me to open it, lift Starfish and slide him out onto my knee.

The changing station is a simple but perfect construction with a set of drawers down either side and a gap in the middle wide enough for my wheelchair to fit in so I can get in straight and close to the top to change Starfish's nappy; rather than having to twist sideways as I did before. All of this was the handy work of Derek, one of Remap NI's amazing volunteers with an engineering background.

The most amazing thing about Remap NI is that they are willing to remain in contact with us as a family and as Starfish goes and his and my needs change in the future, they are happy to step in and help us again. This is better than a winning lottery ticket for me as it means the possibilities are endless for us. Rather than me having to explain to Starfish that Mummy can't take him out to the park or for a bike ride etc, who know what adventures we will be able to go on together thanks to Remap NI?

A couple of weeks before Christmas we took delivery of the finished pieces. I managed to hold it together while Mary, Victor and Derek were here and we even had time for a few photos. As soon as they left I was overcome with emotion. This really was a game changer for us. I'd be able to change Starfish and when he is ready to move to his bigger cot I can put him down to sleep and lift him out in the mornings without fear of injury for either of us. The simple, instinctual, natural things that every mother does for her baby were now possible for us too!

Right on cue and while I still had tears in my eyes, Starfish filled his nappy. He looked up at me with wide eyes, as if he was saying "come on Mum, let's give this a test drive". I laid him down on the new station and changed his nappy easily (although not as quickly as his Dad can do it!) When I was putting his trousers back on he rolled a little to one side to let me pull them up, then back and the same on the other side. When I said "All done" as is our usual nappy changing finale, he looked at me and beamed! As if he knew that something really big had just happened. We were both proud of ourselves and each other.

With every day that passes and the more we use the new equipment, we become more proficient and our confidence grows. I'm not quite at the place where I can spend a day at home alone with Starfish just yet but I really believe it's not far away. I'm also full of excitement for the future and what we will achieve with Remap NI and the rest of Team Starfish at our back.

To learn more about Remap NI or if you would like to volunteer please visit www.remapni.org
If you'd like to make a donation you can do so here https://www.justgiving.com/remap/donate Please put a note on any donation that it is for Remap NI so that the funds are correctly sent to the Northern Ireland branch

Thank you, until next time. Happy New Year
Love Wheelie Momma and Starfish xxx