Self Care

In PAN at the moment we are running a parenting program for challenging behaviours called Take3.  So far so good, we seem to be getting some good feedback and hope the parents are enjoying the course.

One of the areas some of us have been struggling a little is with self care, which is something that the course includes.

Why do some of us find it so hard to give ourselves a bit of time, why is it so hard to put ourselves first every so often.

An analogy which I often use is the one about putting your oxygen mask on first if a plane is going down.  How can you put on your child’s oxygen mask if you aren’t breathing?

Its the same with parenting, how can you look after your child if you are running on empty?

Take3 asks us to do something small, two or three times a week, to allow us time to think and put ourselves first.  This could be as simple as having a walk outside in the fresh air, or listening to our favourite song.  It could be having a coffee with friends or a bubble bath and face mask.  As I’m writing this, I’m thinking “a face mask would only take 5 minutes of my time up”, but I know I would put the mask on and instead of sitting and relaxing, I would probably wash the pots with the mask on or check my emails.  Why is it so hard to allow ourselves this time out?

I would love you to comment with some ideas for self care which are easy to do when you have an SEN child or reasons why you think its so hard to put ourselves first for 5 minutes.

People who make rude comments

Today I read a comment on our Facebook site about a rude comment that had been made about a members additional needs child and it got me thinking.

Whilst I don’t advocate physical violence it’s something that I think many parents consider in these circumstances. I guess we should be sensible though and consider a few things:-

  • The age of the person making the comment- lets face it, people of the older generation on the whole don’t have as much understanding of some of the hidden disabilities such as ASC and ADHD.  I’m not saying that’s ok but it’s the way it is.  Should we get worked up about their ignorance? Or should we feel sorry for them?
  • Were they saying it to be hurtful on purpose? If they were, should we approach them and call them out? Or should we just rise above it? Us  SEN mums and dads have built up pretty thick skins haven’t we?
  • What point are you on your journey? My son is 11 now and we’ve had a diagnosis since the age of 6. I’m in a good place thanks to the support of my PAN friends and family so I feel that dependent on the comment I can either ignore it or quietly have a word with the person making the comment if it’s appropriate. But it’s taken a while to get this far!

One if the reasons we decided to have our branded PAN tops was specifically to help deal with comments, stares and ‘tuts’.  People have no excuse to make comments when you have a stonking great sign which clearly says you are ‘Parenting Additional Needs’ on your back! I guess they still will make comments though. For some people the comments are made because they don’t know how to explain what is different about our children to their own children.  

Whilst I would love to campaign for wider awareness of hidden disabilities I have rather a lot on at the moment…….DLA renewal is coming up!!!!!!

#TIRED

Well Im back on line now.  The past few months have been busy at home and also in the world of PAN.  Lots of changes going on, we’re becoming a charity now, we are delivering an advocacy service for our members and we’ve started a siblings project to enable us to help the whole family.

My title has come from the fact that one of the tablets I take for my bad back has had the peculiar effect of keeping me up all night!! I mean literally ALL NIGHT.

I take lots of pain killers for the bad back that has developed from lifting, restraining and also dealing with Oscars epileptic seizures.  So there I am at 1am thinking if I dont go to sleep Im going to be exhausted tomorrow and dealing with a hyperactive Oscar. GREAT.

Anyone else experience this???

Keep an eye on the blog as Im going to be writing a summer survival blog for ROMPA

Esther xxxxx

 

PAN Sibs group

You may have noticed on the facebook page that I keep asking about a Sibs group.  Here is a post from Jordan who has a younger brother, Evan with Autism.

Hi, my name’s Jordan . I am 15 years old and i love dancing, music, singing, shopping and my best friend Zoe. I support Barcelona and Manchester united football clubs but I’m from Chesterfield. My 2 favourite movies are whip it and Monte Carlo. My 3 favourite bands are evanescence, fall out boy and Mcfly, and i love my family and friends.

This is me and my brother called Evan, he is 4 years old and he has Autism. He likes copying things.

I love playing games with him but he is very protective of his trains. Sometime he can be a bit boisterous especially when we have tickle fights. I now know when to stop he likes to put his bottom teeth in front of his top teeth i know that when he’s turning a bit “evil”. Sometimes he will copy things myself, my step-sister or anyone says, so we have to be careful what we say, i have been trying for a year now to get him to say “love you” and about a month ago he finally said i was so happy, even though he doesn’t understand what it mean i was still so cute. He used to say about 5 words now he is starting to say sentences and statements like
• IPad a choo train
• IPad a house of mouse
• Racing car go really fast
• Too high
• Oh no
• Ouch
He loves trains, especially Thomas the tank engine.

At Christmas we bought Evan a train table and when he saw it he didn’t really know what it was or what to do but then me, my step-sister (Demi) and my mum (Lisa) built it and he knows what to do now and he loves it. There is a grey bridge on the left and the mountain in the top left hand corner makes noises, when he first used it, it made him jump but now to us it’s annoying but to him he loves it.

 

Parachute

Yesterday a few members of PAN met up at the park to play with our new parachute.  Im not sure who had more fun, the kids or the adults!  It was a fantastic workout for my bingo wings!

Heres a book review for you from Suzanne

I can highly recommend to readers ‘The Reason I Jump’ by Naoki Higashida. It has a forward by David Mitchell who helped translate it. The author is a 13 year old boy with severe autism. Although unable to speak he has written this amazing book. It lets you in to the world of living with autism and how things affect him and why. Chapters are very short and start with a question such as ” Why don’t you do what you’re told to straight away?’,’Why do you line up your toy cars and blocks?’, ‘What causes panic attacks and meltdowns?’ I am a parent of a 6 year old boy with autism. Of all the books and literature I’ve read on autism( and I’ve read many!) this has to be the most powerful and insightful. I finally feel that I can begin to understand my gorgeous boy and most importantly be able to help and support him better.

Exciting News!

One of the founder members of PAN, Suzanne, has agreed to blog with me.  Here is a bit of information about her.

I am a SAHM to 3 children, Elizabeth 17, Robert 6 and Matthew 4. I moved to Derbyshire in 2004 when I met and married my husband. Prior to this I had been a single parent for 8 years to my daughter, so understand the challenges this entails.

I am also a full time carer to my husband, who is disabled. Our lives changed when he was diagnosed with a condition leaving him physically disabled and in chronic pain. Before this I had been working full time as a primary school teacher. I taught for 16 years in London, Liverpool and Derbyshire and achieved the role of ‘Assistant Head teacher’. I therefore feel I have some insight into the education system.

Robert was diagnosed with Autism when he was 4. He attends mainstream school with a Statement of Special Educational Needs and receives 23 hours 1:1 support. His needs are many but as the saying goes: ‘when you’ve met one child with autism, you’ve met one child with autism’. I have cried many tears; some of joy, some of frustration and some of sheer exhaustion.

Having a child with an additional need has a huge impact on all the family and I am constantly worrying about the affect it has on Robert’s siblings. I strive to be there for all my children and give them my time and love equally. This is not always easy.

My son has taught me so much about myself, other people and about life in general. We truly are our childrens’ advocates, they need our strength and love to thrive in this world that at times can be so difficult and confusing for them.

I have been lucky to made many new friends through attending local support groups. Although our children are all individuals and their needs all vary, we share a very special and common bond.

I hope to be able to share some of my journey with you.