14 June – Welcome back to normality…

Well finally the kids have gone back to school after 2 very long weeks. With the Jubilee celebrations over to it certainly does feel back to normal.  We celebrated the Jubilee by having a family BBQ.  We were contemplating taking the children out to celebrate but Laurens mobility is very very poor due to the Botox so we had a few family members around and was a fun day.  The trampoline and bouncy castle was out, as to the sand and water tray for the kiddies so it was a nice family day.

The last few weeks however have also been quite stressful.  Laurens recent Botox injections to help her with her Cerebral Palsy have had a very poor effect.  She is now chair bound.  Botox is supposed to release the tightness of the muscles, but this hasnt happened this time round.  She cant weight bear on her legs so is collapsing to the floor.  As she is 7 she still wants to get around and being so determined she is crawling.  As a mum, its awful watching her, the age she is.  You can see the determination in her face but then the disappointment when shes falling.  Shes now off school and is having homework sent home.  Until she is up on her feet she will be at home (having lots of huggles with mummy)

The holidays havent been easy, and to say stressful is an understatement.  Luke (6) also has Cerebral Palsy, and is on the Autistic Spectrum.  He cannot bear much sound, the slightest sound annoys him and will instantly set him off in a tantrum.  On the other hand I have Erin (6) who along with the FACS Syndrome has been diagnosed partially deaf in both ears…….if any of you have an autistic child/children you can imagine the uproar.  Luke not being able to tolerate noise where as Erin cant hear properly so therefore talks very loud.  It has been a constant battle of calming Luke down to the point now where we are using the living room as his quiet space.

Lots of appointments with Luke going for his splints in his shoes to Orthotics ( to help his foot into a better position) Paediatric appointments, and this morning an MR Scan for Chloe to help with Incontinence has kept us busy.  We hadnt even left the door and she had fainted.  So awful seeing this.  Wasnt much better when we got the hospital. Her screaming at the thought of having a needle, she definately got a good set of lungs.

As a family with special needs, routine is imperative for us.  When not in the normal school routine, it throws the children as they dont know what is coming next. It also helps me and Joe as parents. Every family should have a good routine, it helps the day run that little bit smoother.

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