Newborns

 

It’s 7.30am, it’s not been a good night.  A mixture of babies on the ward, loud talkers, fireworks until the early hours and nightmares.  I have to admit to fighting fear.  Immi’s eyes are well over to the left and she hasn’t spoken yet.  Everyone says it’s early days and it got me to thinking about being born.  In many ways there are similarities; her brain is having to learn to work in a completely new way.  Just as a baby doesn’t develop over night, but takes weeks to form, grow and develop, her brain and body is having to do the same.  And just as new parents don’t have any idea what they are doing and are full of trepidation mixed with a bit of fear and excitement I sit here fretting over her new behaviours and desperate to see improvement and development.

It’s similar in the spirit realm too.  Jesus said that just like when we are born physically as babies, we need to be born again spiritually.  When we make a decision to follow Jesus it’s a new start.  We often know nothing.  The three basic needs of all babies are to know they are loved, to know they are safe and to know they will have their needs met.  It is the same for us now and the same for when we start a new life with God.  He wants us know we are safe in him, we are loved by him and we will have our needs met by him.

I’m concentrating on these now.  Sat here, we have all we need in this moment, we are in the safest and most specialised place right now. We are having our needs met, by hospital staff and by many of you who will read this blog. And we are loved, by God, but also evidenced by the many many messages of support we are being send.

So as I sit watching the monitor I’m holding onto all of these and to the fact that like when she was a baby my job is to keep her safe, to love her and enable her needs to be met. Then I can just watch her develop in her time.

Charity choices.

I met some lovely people this evening.  We walked into the room, knowing hardly anyone (actually there was one other couple we knew) and walked out having connected, chatted and made friends easily with a number of people.  What made it so easy?  We all had something in common.  We all had a child with Autism.  

We have not had very much to do with the charities surrounding Imogen's labels.  Not for any prideful, 'we don't need it', issues (its quite clear we do!) But simply because we haven't had the capacity.  If Imogen only had one diagnosis it might have been easier - you would know who to give your allegiance to!  But it is more like playing cards, 'pick one, look at it, put it back in the pack!'  

We have 'dabbled' in charities.  Hemihelp (for children with hemiplegia) gave us some great advice and have a really useful parents forum on their website. So when Imogen was first diagnosed I spent a good six months writing to people on the forum and my Dad also ran a half marathon raising money for them.  

I also spent a bit of time on the Dystonia Society website when she was diagnosed with this strange and unpredictable disease. The actor who played 'Charlie Fairhead' in Casualty was their patron, being a sufferer himself, and we continue to dip into both of these great charity websites. But then the epilepsy rose its head - I knew nothing about epilepsy, but I knew there was an Epilepsy Society as we lived in the village where their headquarters is based. 

So again I read up on their website, but then the wave of the next two diagnoses - ADHD and ASD (don't even start me on dyslexia!) and with them a whole lot more charities.  I found it all, the number of labels, diagnoses, charities and websites, quite overwhelming and backed off from most.  Not because they weren't friendly or helpful, but there was just too much information, I felt like I was constantly playing that game at the fair when you hit the gopher on the head and another pops up.  Just to keep on top of all the medical appointments was a feat, let alone try to make contact with charities, and which would I pick anyway?!

When we moved up to Derby I was put in touch with 'Umbrella' which is a charity in Derby for families with Special Needs children of varying diagnoses. That was helpful and we became members. The group met once a month (and still do on the first Wed morning each month) at our church, but I still kept my distance.  I didn't intend to keep my distance and I wasn't sure why I was.  I only recently realised its because  I just don't have the capacity.  Now that sounds a bit crazy when it is a charity that in its nature is supportive and caring (as most are), but actually to be involved in any charity takes time. Time to fund raise, to listen to other parents, to go to meetings.  And I just didn't have any margins to do that, I guess fear of being sucked into something that I couldn't cope with kept me away.

This evening I think may have been a turning point.  We went to a meal.  It was a meeting of the NAS (National Autistic Society) Derby Branch.  It was great, there was a natural connection.  People who understood.  People who had been through similar experiences and had either walked a similar path or were walking it now.  I met some people who I have a feeling are going to become good friends.  And I realised that for the first time in years, I must have found some capacity!

(I do want to say at the end of this blog that ALL the charities that I have had any dealings with have been supportive, helpful, friendly and ready to help.  It is simply our journey that has stopped us getting more involved in any one charity.   If you or someone you support is struggling and needs support in a certain area - please do contact the relevant charity.)

Frustrating, amazing independence.

I know that one of my biggest jobs as a Mum is to help Imogen become more independent.  I also know that watching her get dressed is one of the hardest things to do.

Immi is fiercely independent and determined already (one of the traits that I admire in her and has brought her through a lot already).  And so every school morning I play a balancing act.  I sit in her room with her and coax her out of bed (I have tried chivving her along, dragging the covers off, yelling, threatening - all of these seem to end up taking longer with both of us stressed out, so coaxing it is.)  I put on 'Tiny little me' from the album 'Great Big God' her present favourite, pull up the blind and tell her about the day, throwing in every second sentence 'Ok lets get your pants on now!'

By nine most Mums should be able to just shout up the stairs - 'come on get dressed!'.  We do this at the week ends.  It usually takes well over an hour of many visits to the room, normally finding her in some state of undress sitting at her desk drawing! So on school days, when time is limited, I must take a different tack. I must stay present.

Generally I have to get her started, pull of the pjs and hold the pants out for her to step into, then she takes over.  Trousers aren't too much of a problem - we only have ones with elasticated waist bands - one handed buttoning, especially on trousers, is tricky.

Then comes the top half.  She will not let me help and so I watch, helpless, everything within me wanting to jump up and aide as she wiggles this way and that to get her right arm which she has no control of into the right position to pull her Pj top off.  Finally free, she shakes her vest (she must wear a vest - even in the height of summer, according to her - not me!) and tosses it around in her left hand to get it into the position to put her head through, then, a few more wiggles and she has her vest on.  

Her shirt, on a number of occassions I do not manage to surpress a 'Can I help you?' is an awkward object.  She manouevers it into a position to get her right arm through the sleeve and leans back, managing, with all her might to lift her arm and aim it into the sleeve, rather like watching  someone try to thread a massive thread through a needle, but holding it about 5 cm away from the end so that they have no control over the tip of the thread.  Eventually she manages this and I am allowed to button up her top button - she has not managed to master this one yet.  Then she painstakingly manages the buttons.  It is painful and heartening to watch - she does it better than I could one handed and never gets angry.  Sometimes she gets a head start and then we have a button race, she starts from the second to top button and I start at the bottom.  As long as it is a draw things stay stable! 
By now she is pretty tired and there have been a number of distractions between (she has not taken her ADHD meds at this point, hence I have to stay present to keep her on task.)  This process has normally taken,  about half an hour to 40 mins, and we still have socks, tie, and splints to go!
The tie - if it wasn't so heart wrenching it would be funny.  She can do this alone and so insists on doing it alone.  Her tie is on elastic (Hallelujah!) and so she places it under her chin and then stretches the elastic behind her head and pulls it down round her neck.  Somedays she manages this fine, other days it keeps bouncing back up and hitting her on the nose or forehead.  Comical but frustrating for her.  Eventually the tie is mastered and she lowers her collar.  I have tried to persuade her that she doesn't need her collar lifted in the first place, but no!  That is how it is supposed to be done.  So she lowers it and then I adjust it as she has always lowered it too far, so the seam is showing and about a centimetre of the inside of her shirt.  
She has never managed to master socks, despite buying them many sizes too big, so I get to put them on and help her with her splint.  We are finished!  Phew!

First and Second baby tucked up in bed.

Oh no, wait!  We must make the bed!  never mind that the rest of her room looks like a bomb has gone off! - we must make the bed and put first and second baby in for the day time sleep.  Now, I have tried bypassing this section - oh no!  Woe betide me!  It just comes round and bites me on the bum as she disappears when she should be cleaning her teeth or getting her coat on, or we have a melt down as we are walking out of the door because it isn't done.  Recently, my husband and I have come upstairs at night to find our bed also neatly made with our night clothes under our pillows - fairies?  No an Immi!

Neatly folded pjs!

We allow 1.5 hours before school in the morning and it is always a rush at the end.  As a person who likes to be on time, and with a responsibility to get my son to school on time too, I get extremely frustrated at the amount of times I am shouting at them to grab their things as we walk (no, run) out of the door.  But Immi will not be hurried, she doesn't work to the time schedule of the world.  And actually, if she did I am sure she would spend her life totally overwhelmed and frustrated.  She has learned (or maybe it is innate) to go at her own pace, to be happy with her achievements, to be determined when she needs to be and find joy in the little things like a neatly made bed.  Instead of rushing her, I should be applauding her, she shows more courage and determination every morning that I often show in a year.

Well done Immi girl!