Wednesday, May 13, 2015

so many kids, so little time, and now a dog


Life with busy pre toddler (new borns, 3mths to 12mths) twins and autie boy

Life is a rollercoaster you just got to ride it

Sweet Jesus, make it stop, make this merry go round stop.  Yep this is life in my house.  Twins as babies is the easiest and most beautiful experience you will ever have.  Life is ok and L is in school 5 days a week from 8am till 4pm (transport hours Inc) and than goes on in home from 4pm until 8pm mon tue and fri, and is on respite wed and thurs. L is so happy with this as are we, because with confinement  is dangerous, like impulsive and physically strong and aggressive under duress, all this time out of the house allows him to tolerate home life much better and he is not really around 2 busy pre toddlers that much.  Life is ok not perfect but ok.  L is also gone on in home 7 hrs on a Saturday but is home all day Sunday.  We get to be with the babies when L is gone and on Saturday we leave the babies with my mum and head off with K R and Iz for the day.  We also sometimes leave the babies with my mum on a Sunday and either just head off with L or with k L Iz and R together, constantly trying to get in as much quality family time as we can, yet at a financial expense and renders us  exhausted but we do it and we make it work. 

Babies get a lot of floor play and are exposed to sensory play as much as possible.  They are super glued to my hip constantly, worryingly so. The paranoia and autism concerns are there so we are on the ball, we know all we have to do and should be doing and we know well what to look for and encourage more of. They are not meeting their milestones, were concerned but we remember they are preemie twins so try not to overly panic.  E has babble but M does not, they both smile and respond to cuddles, kisses, affection and they had limited but do have interactive skills.  They hate being outside of the house, they really hate it, they are home birds, this does not sit well with me and I’m the complete opposite.  They scream to go home; they hate people and esp. groups of people.  If my friends come round for coffee they scream to go to bed.  They will noT go to anyone but me G K or my mum. 

At 8 months I’m not happy and place the on the assessment of need, I know in my heart something’s not right at all. 

WERE NOW TODDLERS (12mths to 18mths?)

Dangerous territory for L, there on the move.  Ohoh L not coping at all.  What the hell are we going to do G, we need an extension.  No money for one, don’t want a huge bank loan either, what are we going to do??  We have a huge sitting room, its stupid big, let’s split it in 2.  We take out a loan, not huge but not small either but we’ll manage.  After about 2 months it’s ready, L has his very own chill out room which doubles up as a play room for all the others when L is not here, its working perfectly. 

Exhaustion is starting to kill us as babies stopped sleeping and L doesn’t ever need sleep anymore esp. if there is a poxy full moon,  Sometime L sleeps but babies don’t, than babies will sleep but L doesn’t, its painful.  Something’s got to give, we finally get awarded 1 respite weekend a month, thank god as me and G use this weekend to recover as we do be fit for nothing.  We shout a lot for help and we have good services and team behind us who listen, thank god for them too.

E is sitting but M is not, skip forward to E is not walking but M is cruising furniture.  E gets sick and recovers in no time but if M gets sick we end up in hospital every time. E is on her bum yet now M is walking.  Most of the worry and focus is on E.  Both twins are on a non dairy and non soy formula due to intolerance.  

ASSESSMENT OF NEED

Twins went for AON, the outcome was Global Developmental Delay to be continually assessed.  They receive regular OT S&LT, Orthotics, Peads apps, Physio; they have a nurse come see them every fort night too.  This is part if the continual assessment for AON and they meet up as a team to discuss outcome and progress.  I started twins in a crèche 2 days a week which is doing them the world of good.  Part of the bigger problem is they are stuck to my hip and want no one else but me, autism is mentioned all the time in relation to them.  I hate their paediatrician but she’s good at same time, she is testing for genetics and metabolic disorders also. 

M is so bad health wise he’s forever in hospital.  He’s very under weight and again turns yellow the odd time.  When he get’s sick he is floored very quickly, something to do with key tones, white blood cells, glucose etc.  Test after test is done but nothing showing so is a mystery. I think I spent more time in hospital than I did at home for his 2nd year of life.  He was permanently in hospital on drips etc.   Could be very frightening as he looked so lifeless while E who was the one every one worried about when born was actually the stronger of two.  We had the preemie curse; they caught every bug / infection going. 

Ah yes the fighting AGAIN
A fight for DCA, a fight for medical card, here we go again, but actually not near as bad as the fight I had for L.  It was hard to get and did cause serious stress but we survived.   We had a few other fights along the way and much heartache but again we survived. 

So while I can say having twins was the one of the best experiences of my life it’s been very tough and exhausting too. Esp. when L is acting up something terrible in the background and teen hood is a nightmare and teen lucky to be alive most days.

R has a few little bits and pieces going on but the older he get the better he gets.

Back to L Nov 2013

Ah yes lets get back to L, where does one start, sweet Jesus what a time of it we have had. 
We get the call; we’ve been waiting on this call, woohoo we have been matched to an autism assistant dog for L.  We travel down to Cork, they are a perfect match.  A few months later I travel down to cork to do a weeks training with the dog (D), I’m in love with this pony, well he’s as big as a pony.  He is a black lab/golden retriever x.  He’s a lunatic, ah here you giving me this head case of a dog, he’s as hard to handle as L is, surely they made a mistake I thought.
He is food obsessed, hyper, attention seeking, and all the things L is.  I take him home half thinking I’d be sending him back.  After a month he settled down, he was the perfect dog for our family, well for us all except Jamie the cat, they hate each other STILL but starting to tolerate each other a bit, skin and hair flew at the start.  D sure doesn’t like cats. 

L and D have no friendly relationship together just a pure work relationship, I actually prefer this and this its better for us all.  I am now able to let L lead the dog himself so no attachment to me necessary, just commands from me.  This has given L so much independence from us and so much responsibility for his own actions.  D knows well what L is and is not allowed to do so sit’s on ground to restrain L if L is playing up or starting to bolt off, they are a match made in heaven.  When not working D is on the couch between me and G being loved and adored.  We could not imagine life without D; he is a member of our family and treated just the same as the kid’s lol.

D has been a god send as is forcing me out of the house on long walks every day.  We go for 5 to sometimes 10 k walks and I started running also. I love it, its giving me so much head space and breathing space; the clingons are at home with daddy and I’m just free.  I also change my diet and have lost 3 stone; we have all lost weight and are feeling so much better in our selves. 



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