Tag Archives: special needs

So this is Christmas….

I was listening to the iconic John Lennon song ‘Happy Xmas – War is Over’ while celebrating Christmas Eve with my chicks and my parents here in our rural nest, and realised that, in answer to the question ‘And what have you done?’ I have a long list on some topics and a very short and bare one on others.     Maintaining this blog would fall on the latter list and yet I am still loathe to let it go. (In fact I just paid all the invoices to renew my web-hosting for another year just this evening!)

So what have I done?    This year has been a year of consolidation with life in the country. Our little flock of 5 sheep grew to 17, and we have enjoyed some lovely lamb meals as a result.  Our flock of chickens shrank from 14 to 6 and our egg production increased as a result!   Go figure!   We started the year with two dogs and ended with two dogs, but sadly not the same two.  Dottie the crazy terrier has survived to deafen us with her barks but after a couple of unusual and serious illnesses we lost Milo the Labrador in November.     In December we welcomed Buddy the kelpie and he is settling in well, but has not replaced Milo in my boy’s affections.

We adopted a resuce dog, Buddy the Kelpie, in December 2016.

We adopted a resuce dog, Buddy the Kelpie, in December 2016.

On a business level the year started well with me doing lots of sewing for the Shop Handmade, and lots of consulting for a new business venture.  By the end of the year the sewing was non-existent and I had to pull back from all the consulting as I was facing burn out again and didn’t want to head back down that path.   I live in hope that I will return to consulting and sewing in 2017, but we will see.

Our flock of sheep includes two sets of twin lambs born in late October.

Our flock of sheep includes two sets of twin lambs born in late October.

The family front is where the hardest work has been focused.   My boy has continued to struggle with mainstream schooling, and with his frustrations turning into aggression and violence. As we end the year I still don’t have answers on the school question but am comfortable that, after 4 separate hospital admissions I am on top of managing his behaviour, and that he is on the right combination of medications.   He is 10 now (I know – where did that baby boy go?) and is incredibly articulate, intelligent and compassionate, but also demanding and exhausting.    My girls have also had a rough year with the constant stress of living with this stress taking it’s toll on them.  I have found an excellent team of professionals to help support them and am sure we will get through this but the combination of all their needs saw me stepping away from the small amount of work I was doing and trying to be as present as possible for all three of them.  My artist-in-residence finished primary school with her art chosen for the cover of the yearbook, and my eldest chick has found her groove and her tribe at school and brought home some great feedback on her school report.

2016 has been tough.  In our home and in many other homes across the world.  I don’t think that there is any particular magic in a new year changing social attitudes, or the way an autistic child’s brain works, but I am hopeful that the 6 week school holiday break will give us all a chance to recharge, refocus and rebuild some of our battered resilience.   In the meantime I have gone back to the basics.  I have been sewing for the love of creating, not for work.   There are handmade pyjamas appearing under several family Christmas trees this year, there is a queen sized patchwork quilt that is almost, but not quite, finished for my eldest chick to receive in the morning under the tree, and there is hand embroidery on another gift after my discovery of the joys of sashiko (Japanese embroidery) earlier in the year.  My plan is to work on small personal projects for a while, then to get back to designing and making on a business level when I am ready.

My gorgeous mother helping me to pin the quilt sandwich together before tackled machine quilting it - perhaps choosing a queen size quilt for my first self-quilted quilt was a tad ambitious!

My gorgeous mother helping me to pin the quilt sandwich together before tackled machine quilting it – perhaps choosing a queen size quilt for my first self-quilted quilt was a tad ambitious!

I hope that your Christmas and New Year is spent with people you love, who cherish you for who you are, and that you have a chance to recharge and rebuild before the next year sweeps us away into everyday life again.  From my nest to yours, Merry Christmas. xx

The Waiting Place

Dr Seuss is a source of much wisdom.   His book “Oh the Places You’ll Go” is a firm favourite of mine.  As I was reading it to my son a few nights ago I realised that at the moment I feel like I am in what he describes as “a most useless place.  The Waiting Place……”    I think I have been hanging out here for a while without realising.    What is required now is to listen to Dr Seuss’ advice on the subject “No!  That’s not for you!   Somehow you’ll escape all that waiting and staying.  You’ll find the bright places where Boom Bands are playing.”

How did I come to be in the Waiting Place?   A combination of circumstances really.    Parenting a child who requires round the clock support and supervision, and who goes to school for, at most, 4 hours a day, cuts into the time available to ‘get things done’.    It cuts into the ability to go out and be amongst the bright places.   It removes the ability to commit to anything socially or in relation to employment, and it uses up so much energy that it is easier to lie on the bed reading trashy novels on a kindle than to use the time to play with fabric and make beautiful things.

But it is not all about parenting a beautiful boy with lots of needs.   It is also about getting a bit lost along the way in terms to what I want for my business, what I want to provide for my family, and what I want for our future.   I have had so many plans and visions of how to make my creative business a financial success – and then have to shelve those plans in order to focus on family issues.     I provide consulting services to another business, and I enjoy that.  I like the feeling of being part of a team, of being able to solve problems, of being valued.   But in making that choice I have chosen to use my spare time to work for someone else on their business and not on my own.    Do I regret that? No.    Being involved in another business has been good for me on many levels, and I have been aware of the choices I have made at each point.

But it all means that I am sitting the dreary Waiting Place.   Waiting to have that chance to build my own business, waiting for my son’s behaviour to be more manageable, waiting for other significant adults in his life to understand his needs, waiting to have time to do things that make me happy, waiting to be able to have a day off parenting, waiting to remember my identity outside of being a mother and daughter, waiting to find that bright place where Boom Bands are playing.   Boring.  Dreary.   Blah.

All this is by way of a confessional/explanation about why I have this fabulous website, and beautiful branding, and exciting ideas….. and it is just sitting here.  Waiting for a bit of love and attention.   I am not quite sure what the next step is.   There are so many options – I can reinvigorate the business that I love so much, let it sit until I have time, or admit defeat and walk away.    The only person who can make these decisions is me.   The only person who can stop all that waiting is me.     I have been constantly busy working on the family/parenting stuff, but the business/me stuff?  Not so much.

Might be time to take more advice from Dr Seuss when he says  “You’ll get mixed up of course, as you already know. You’ll get mixed up with many strange birds as you go.  So be sure when you step. Step with care and great tact and remember that Life’s a Great Balancing Act.   Just never forget to be dexterous and deft.   And never mix up your right foot with your left.”

Time to retune the Great Balancing Act that is my life.  Time to read back over the blog to see what has reinvigorated me in the past.   And time to remember that writing to you here is good for my soul.

To finish on a more positive note, Autumn is sneaking in very slowly this year on the farm.   We haven’t required winter clothing yet and haven’t had to light the fire.   But the colours are changing, and today we have had rain, so the feel of Autumn is slowly taking hold. The chicken coop has been cleaned out in preparation for cooler weather, the sheep are down in the home paddock eating the grass while we have it, and my parents have been busy gardening to keep our gardens looking beautiful.

Autumn Rose|a little bird made me

The continuing warm weather means that the rose garden is full of luscious blooms.

Yellow roses alway make me think of the Debra Conway song.

Yellow roses alway make me think of the Debra Conway song.

 

 

 

An end of year wrap up

I have been very quiet here over the last few months, although still using Instagram and Facebook.  I think social media goes in cycles – sometimes it is about the story, sometimes it is about the image and sometimes it is about the conversation.   It seems timely, then, when the year is about to roll over, to capture a bit of the last 12 months in story, image and conversation!  (All this without sending anyone to sleep. Hmmm….can I rise to the challenge?!)

This year was a big year for my little family with our move to a new nest and rural life.  At this point (days away from the 12 month mark) I can honestly say that I do not regret the move at all.  There are days when yet another drive into town makes my heart sink, but for the most part even the commute (20 minutes to most places I need to get to) is extremely civilised!  We now have 12 hens, 5 sheep, 2 dogs and 4 goldfish.

We bottle fed Poh Poh from when she was about 6 hours old and all fell in love with her.

We bottle fed Poh Poh from when she was about 6 hours old and all fell in love with her.

We welcomed Milo into the household to join Dottie the crazy terrier. He gets a lot of cuddles.

We welcomed Milo into the household to join Dottie the crazy terrier. He gets a lot of cuddles.

We leased one of our paddocks to the neighbours so we also get to enjoy their horses.  The gardens are beautiful and my parents do a lot of work to maintain them (I say guiltily!)  We named the property as a birthday gift for my Dad (who is a Deacon) and the same friend who made the sign also made a custom ordered signpost for the garden as a gift for both of them.

The sign for our property made of jarrah from Western Australia by the very talented Michael from Wood and Wax Studios.

The sign for our property made of jarrah from Western Australia by the very talented Michael from Wood and Wax Studios.

The garden signpost with a few of the places my parents have lived marked on it!

The garden signpost with a few of the places my parents have lived marked on it!

Also on the family front we had a wonderful family gathering in September to celebrate my parents’ 70th birthdays – with two of my siblings, and 6 of their siblings, plus partners, along with lovely friends, joining us for about 4 days.  We have now established that the house can accomodate 9 extra people, and cope with two camper vans. It was a huge highlight for all of us.

In October we went camping after a (much too long) haitus.  It was perfect!

My favourite spot to camp. With this view from the kitchen, there is little to complain about!

My favourite spot to camp. With this view from the kitchen, there is little to complain about!

Big changes in the house included replacing the very, very, very busy carpet with something a little more neutral, and starting the mammoth task of painting.  With the newly opened Ikea store in town light fittings are next on the list!!

Before and after with the carpet replacement!

Before and after with the carpet replacement!

On the sewing front I have been busy. I had a two month break when I injured myself in an altercation with my boy, but returned and have been busy ever since.  For a woman who was intent on being a bag designer I seem to make an awful lot of baby products now – but they sell well, so I am not complaining!  After putting my on-line shop on vacation mode about a year ago, thinking it would be for a month or so, it is still not open.  The upcoming holiday period is a great opportunity for me to sit down and plan what the next year is going to look like – and how I am going to run my business is a big part of that.  I have developed a pile of new products over the last few months, including gift sets, teething blankies (with really soft bamboo velour backing), bibs that can have a dummy clipped to them, fabric covered journals, and a pile of Christmas decorations!  They have mainly been sold through Shop Handmade, with a few custom orders here and there.

A boxed gift set with blanket, bib and teething ring toy - part of my new product range.

A boxed gift set with blanket, bib and teething ring toy – part of my new product range.

Teething Ring Blankets with soft bamboo velour and cotton - they feel sooo nice!

Teething Ring Blankets with soft bamboo velour and cotton – they feel sooo nice!

Fabric covered journals for keeping all your notes looking good!

Fabric covered journals for keeping all your notes looking good!

I have also completed two very special custom orders for people who wanted cushion covers made using clothing that was special to a deceased grandparent, as gifts for their family.  It is a privilege to be entrusted with cutting up these garments that hold so many memories, in order to create a lasting momento.

These cushion covers were made from two shirts that my customer has kept of her grandmothers. I was able to keep the button detail of one shirt, and to add a strip of the fabric on each back too.

These cushion covers were made from two shirts that my customer has kept of her grandmothers. I was able to keep the button detail of one shirt, and to add a strip of the fabric on each back too.

Life with my chicks has had it’s ups and downs – as it always does, but as the year draws to a close there is a feeling that we might be making headway with some of my boy’s issues.  We had to change doctors and counsellors during the year when his both left town, and although it has been a drawn out process to get everyone up to speed we seem to be there now, and to be gaining extra support to assist in supporting him.   The girls have both grown a lot this year, in size and maturity, with the eldest chick even doing household chores without complaining!  Wonders will never cease!

I will spend the next few weeks thinking about what is next for this little bird, and my business and my family, and hopefully will appear here with a little more frequency than I have been!

I hope that this year has treated you kindly, that you have been loved and supported, and that the New Year brings joy, creativity and peace to you.

 

Teaching an old dog new tricks (or 3 things my son has taught me)

I have a low tolerance level for many things in life, and apparently am not shy about expressing this.  In share houses over the years, before I married, there were many running jokes about my scathing statements of disbelief at the actions of others (normally my friends or flatmates), and while I still maintain that many of my comments were warranted (particularly about the infamous exploding dish of sausages incident) most of the time it just served to remind me that I can have a short fuse and a cutting tongue (and, of course, to try and temper it).  For a long time this amused me (I was young and arrogant). Then I became a parent, and it worried me.  I have clear memories of sitting with a neighbour (who seemed to have her life together) and confessing that I felt that all I did was yell at my children.  She sensibly questioned whether that was in fact true, and helped me to see that I wasn’t operating in a state of constant anger, but I certainly worried about it all the time.

Fast forward 7 years or so, and I have realised that I have changed.  On Monday, whilst my son was having a meltdown, I ended up with an injury to my hand that required a trip to the emergency department. (Nothing broken, just sprained.)  In conversation with an acquaintance she asked how I managed to keep my cool, and not punish my son for his actions, and I realised that at no point during this incident had I yelled at him.  This old dog (purely in the sense of abusing the clichéd phrase) has learnt new tricks.

Raising my children has helped me to mature and grow in many ways, but I think the most valuable lessons have come from facing the challenges that raising my boy brings.    He has helped me to learn some important lessons, and change my behaviour.  At the moment I am most conscious of three gifts he has given me:

1.  Controlling my temper and emotions.

Anger Quotes | http://noblequotes.com/When dealing with a child having a meltdown, punishment is not the answer. Angry words used to a child who is already in sufficient pain to be raging against the world will cause more damage than they solve.  Reacting in anger is just throwing fuel on an already well burning fire. Providing reassurance, security and support, and looking for the source of their pain has better short and long term effects, and leaves you feeling better about yourself (win, win!)  None of this is rocket science, but so many of our reactions as humans, formed through our own life experiences, are habitual, so changing those habits is tricky.  Having a child who doesn’t respond to your habitual responses either makes or breaks you I think!  In my case I had to learn new responses.

2.  Knowing what my priorities are.

DON'T QUITIf you have your priorities clear, decision making becomes easy.  (Yes, I know that is obvious but it has taken me a long time to get that sorted in my own head.) Today a former colleague (and still friend) asked if I wanted a job with a great organisation doing work I would enjoy.  After two seconds of thinking ‘that would be great’ I calmly explained that I can’t do that, as my boy needs me, my girls need me, and I can’t ask my parents to take on the level of responsibility that being a full time carer to my boy requires.   And it was okay to say that. I didn’t have to fake being calm about that decision.  (Ginormous step forward!  No furiously planning which strategies could be put in place to make it all happen, whilst juggling 5000 balls in the air. Just acceptance that this is not the right time.)

3.  Patience.

Patience is the calm acceptance that things can happen in a different order than the one you have in mind.This last discovery will shock my old friends. It appears that I have learnt to be patient. Well, more of the time than I used to.  This week I can’t sew, can’t paint, can’t crochet, and can’t attend to a whole list of things I want to be doing because of my injured hand.  Instead of fretting, feeling frustrated, or whinging about it, I have accepted that my plans have to be on hold for a while.  This is a big change for me!  I have chosen to see it as time to do other things, and for the most part that is working out.

Raising a child who sees the world in a different way, and who wears his emotions outside his skin so he feels raw and bruised much of the time is hard, and it wears me down. But honestly, it has been the making of me.  A number of people have told me that he is lucky to have me as his mum, but they have it wrong.  I am lucky to have him as my son.  He has made me a better person, and definitely a better parent.

As a final note, and in keeping with the theme of teaching old dogs new tricks, we are currently minding a friend’s Labrador for a month, and Dottie, our insane and aging terrier, who was so traumatized by our last attempt to bring a new dog into the home, is coping!  I have long thought that giving my boy his own dog to care for and play with would be great therapy – and so far that is proving true.  I see another dog on our horizon!

I hope that you are well, and finding good in the rough patches of life.

a little bird

25/07/2015

If you want to get me cranky, protective and outraged, give one of these statements a try when you are next talking to me.  Even better, use most of them in one conversation, and do it in front of my son.  That is a sure fired way to ensure that I will discount your helpful suggestions on how I can better do my job as his mother.  (It will also 100% guarantee that I will write a blog post about it.)

1. He just needs to fit in with everyone else

You think?  Wouldn’t it be great if just telling him to fit in with everyone else was the answer.  Wouldn’t it be great if we were all cut from the same mould and could fit into the designated slot in life that you think we should fit into.  Oh, and while we are at it, thank you for telling me, after knowing him for a very short time, how you know what he ‘needs’.  Because up until now, while I have been dealing with schools, psychiatrists, paediatricians, psychologists, police, social workers and the government, it never occurred to me that I could solve all of this by telling him to fit in.

Fitting in.  What does that look like?  Is that where he doesn’t say anything that makes you feel uncomfortable, doesn’t question whether something is fair or not, doesn’t overreact when he feels he is treated unfairly, and doesn’t interrupt your vision of what your life should look like?  Wouldn’t it be nice if he did fit in.  Did it ever occur to you that perhaps all he wants himself is to fit in.  To not be the kid who can’t cope with too much noise, or with not being perfect at something the first time he tries, who can’t understand why other kids don’t get his sense of humour, who worries that other kids don’t like him because he gets angry when he is overwhelmed.  To be ‘normal’.why fit in when you were born to stand

Guess what?  I don’t want him to fit in.  If he fitted in, in the way that you want him to, he would lose himself, and all the good things that go with being him.  His awesome sense of the ridiculous, his ability to give hugs just at the right time, his sharp mind and amazing strategies, and the endless possibilities that are open before him because he has to work so much harder than everyone else to do the same things that other kids in his class do with ease.

I'm beautiful in my way'Cause God makes (2)

2. He is just doing this to get attention

Of course he is!  What kid climbs an electricity pole in the middle of winter and declares that he won’t come down, in order not to get attention?  What kid rings his mother who is many hours drive away and threatens to kill himself, in order not to get attention?

The question is not whether he wants attention, it is WHY he wants attention.  What overloading of his senses, his ability to cope, his sense of fairness has happened that is causing him to act in such an extreme way?  And what can we do to help him to see that he is loved, supported, and cherished, so that he doesn’t need to behave in this way in order to get our attention.

3. He needs to understand how this makes (insert name of choice) feel

Ouch.  There it is again.  What he ‘needs’ to do.  If only he can rewire his brain circuits so that he understands other people’s emotions clearly, and take them into account when those people are contributing to his need to seek attention, then everything will be okay.  You will love him if he understands how his behaviour is affecting you.

Maybe, just maybe, you might like to think about how an 8 year old kid sees the world.  Forget whether he has special needs or not – most 8 year old kids are still fairly egocentric in their actions.  Telling him to take your feelings into account and to stop this behaviour is not, unfortunately, a magic cure-all.  If it was then I would be rich, having saved many thousands of dollars on specialists because I could have taken your advice for free.

4. He needs to understand the consequence of his actions

Uh-huh.  Again, what he ‘needs’ to do.  Because if he can just think about what his behaviour is doing, then he will stop it, straight away.  Can I remind you again, using small words, that this boy is 8 years old.  He doesn’t like hurting people.  He doesn’t like feeling hurt.  He doesn’t like constantly stumbling through life, letting people down, making mistakes.  If he could, at this age, think of the consequences of his actions and therefore change his actions, don’t you think he would?

5.  He is going to have a miserable life if he doesn’t start to improve his behaviour

Grrrrrrr…….how dare you presume to tell my son what his life is going to be like. And even worse, how dare you tell him that his life will be bad.  He believes the things that adults tell him.  Ever heard of a self-fulfilling prophecy?  And quite apart from my emotive response to how an adult can be so cruel to a child, how on earth do you know what his life is going to be like?  Have you seen the amazing steps he has taken over the last couple of years?  Do you know just how bad things were 3 years ago?  Do you know how much work and support I put into ensuring that in fact he has a wonderful future ahead of him, and how much he looks to the positive future now? And finally, do you honestly think that this is his choice?!  What on earth is he hoping to gain by ‘choosing’ to behave in this way, particularly when not behaving in this way has so many more rewards!

 

Lead by exampleAnd finally – don’t ever, whether a child has special needs or not, talk about that child in such a way in front of him or her.  It is cruel.  And slightly ironic.  While you are so busy telling me that he needs to control himself, behave better, understand the consequences of his actions, you are doing the exact opposite.  Perhaps leading by example would be a better way to help him.

Vent over!  Regular programming will resume shortly!

A small post-script.  If you think you recognise yourself in this post, you probably do.  (And we may never have met.)

 

Ups and downs

This week has been a whirlwind of activity. Meetings, errands, nights out, housekeeping, and one glorious day at home. And this is what I designed and made in that day!

Teething rings|a little bird made me
Teething toys with a wooden ring and one of my silicone tips! I do love a new product!

I also completed a custom ordered cushion cover for a 9 year old’s birthday. I challenged myself and made and installed piping for the first time. (I need to perfect corners!). I was to deliver it yesterday, but when I got to town I realised that I had left it at home. I rang mum and she met me half way to hand it over, and I dropped it into the Shop on time so that the customer could collect it. Phew. Then I get a message last night saying the customer loves it but I have missed a piece of applique stitching.

IMG_5026.JPGAnd she is right!!! I am mortified- and having to laugh at the irony that after being so proud of my efficiency in getting it delivered despite having forgotten it, I then had to drive in to town and collect it, repair and return. I was getting too smart for my own good there!

Every day a little thing happens to confirm that moving out here and sharing the property and our lives with my parents was the right thing to do. (And not just Mum driving to meet me half way when I forget something!). They babysat for me twice this week and there was no stress, no drama, just normal routine for the kids. Of course the down side is that two late nights in a row mean two late nights in a row for them.

It is not without it’s challenges though.  Life with children brings new and interesting surprises every day.  Today was the announcement by my boy that he had been testing how strong the pipe from the dam to the pump was, and now there was water coming out of it…….  Some investigation and breathing out later it was revealed that the strength of the pipe had been tested with an axe……..   More breathing out and mantras of calmness later a solution for repair was identified, and the pipe is fixed.  For me it identified that this was nothing to do with my boy’s special needs, and everything to do with him being an 8 year old.  He is testing boundaries, exploring our new environment and having fun.  And 8 year olds, no matter how intelligent, don’t always think of the consequences of their actions.   I had to think back to things I did when I was 8.  And remind my Dad (who was struggling to understand why someone would do something like this) of how we behaved when he was 8.  It helped us both to breathe out, and keep our cool.  Just.  Needless to say, the axe, the pocketknife, and all other tools are now out of bounds for some time.

One day full of production, and one day full of unexpected activity that felt like nothing was achieved.   The ups and downs and unpredictability of life!

For now I am back to my plans.  New products to make, an online shop to open (or re-open), baking to do, and events to attend.  And to keep our spirits up, this tree in the front yard is ablaze with colour.  Fingers crossed that I get a day of production rather than a day of unexpected activities.

IMG_5038.JPG

What no one tells you about parenting a special needs child|a little bird made me

What no one ever tells you about parenting a special needs child

What no one tells you about parenting a special needs child|a little bird made meIn the last couple of years I have had to come to terms with the diagnosis of my boy as having special needs.  I have been walking through the fog of discovery ever since, usually taking one step forward and two steps back.  I have been extremely fortunate that I have a wonderful family who provide great moral support even though none of them live within driving distance, a steadfast group of good friends, and that I have the skills to research and find the information I need.  I have also had to learn a new set of skills and shift my thinking dramatically about so many parts of my life, so I thought that if I shared a few of those discoveries here it might help someone else who ends up in the same boat.

1. You have to become your child’s advocate.   There is no one else in the world who knows your child as well as you, and who has more right than you to stand up for what is right for your child.  If you aren’t comfortable challenging the authority of teachers, principals, doctors, or your own family, it is time to learn. Challenging them doesn’t need to be aggressive, but it does need to involve questioning whether there are other options, whether factors that affect your child have been taken into account, and whether this is in the best interests of your child.

What no one tells you about parenting a special needs child|a little bird made me

2. There are laws to protect your child from discrimination, but the only person who is going to remind anyone about them is you.  Become aware of your rights and your child’s rights. When the school says ‘oh he/she can’t join the class to do (such-and-such) because he/she will be (insert any myriad of reasons)’, don’t agree and apologise for the inconvenience that your child has caused.  Instead ask what reasonable steps they could take to include your child in the activity.  Often just by asking the question they will be reminded that they have a duty to try and include your child, and will take steps to do so.

3. You cannot do everything yourself.  No matter how independent, strong and resilient you think you are, when you have a special needs child you need to make sure that you ask for help when you need it, or accept an offer of help when it is made.  Your child needs to have other people in his/her life that they trust and are comfortable being with, and you need to have people that you can leave your child with, knowing that they will be cared for and looked after.

What no one tells you about parenting a special needs child|a little bird made me

4. You will learn to appreciate little things that make life good.  I used to think in terms of a good week, or a good month. Now I celebrate a good hour, and sometimes even just a good decision about something small.  Being able to sit and drink a good cup of tea in one sitting is worthy of a celebration isn’t it?!

5. You will become very good at making apologies for not attending events.  I have lost count of the number of times I have had to give last minute apologies, not accept an invitation, or rearrange plans because I know that I need to stay home and not disrupt (further) our routine by going out.    I used to feel embarrassed or awkward about it.  Now I just say “I am very sorry but a family commitment has come up and I won’t be able to attend’, and no one ever complains to my face.  It is about establishing your priorities – what is more important – your children or your social obligations?

6. It is okay to trust your own judgement.  I recently took my children on a spur of the moment holiday to Hawaii.  (I know – crazy stuff!)  If I had thought about it for too long I probably would have listened to all the warnings about travelling with my son, and what could go wrong.  But instead I relied on my own judgement that I could manage the situation for him, and for his sisters, and although I began to question my own sanity on the overnight flight there (when no one slept and he was becoming agitated at the sound of a toddler crying) it turns out that I was right.  By taking everyone’s needs into account we had a lovely holiday that was much more stress free than life at home usually is!

What no one tells you about parenting a special needs child|a little bird made me

7. You have to look after yourself.  This one is probably obvious to many of you, but it wasn’t to me, and I learned the hard way what happens if you don’t read the warning signs.  I had a breakdown/burn out at the end of last year that has forced me to learn what happens if you just keep going without caring for yourself.  Whether it is having time to read a book, catch up with friends, have a hair cut, go for a walk – something that soothes your soul, and re-energises you is essential if you are going to be a good parent.

8. Special needs kids fight with their siblings just like other kids.  My boy and one of his sisters argue with each other a lot.  It is loud, it involves lots of whining, and it drives me crazy.  But I have to remind myself, and everyone else, that this isn’t because of his condition – this is standard sibling stuff going on.  And in the same way, the two of them will play together for hours without a cross word and get angry with their older sister for interrupting the rhythm of their game.  Sometimes kids are just kids.

9. You will get to know all sorts of amazing new people.  I have become friends with other parents of children with special needs who I would not otherwise have met which is great for support, but in fact, because my son looks at the world in a different way, he talks to people I would never think to engage with. I have lost count of the number of times we are at a shop and all of a sudden the lady at the fruit section is chatting to us about her life, or at a camp-ground and we are invited to join a camp-fire because they have met my son, or at a park and the other parents know that I make and sell things, thanks to my greatest advocate.

What no one tells you about parenting a special needs child|a little bird made me

10.  You will learn to laugh at yourself and with your child in a whole new way.  Okay, so maybe that is because if you don’t laugh you’ll cry some days, but laughter is good for us, and if you can remember to laugh at the ridiculous, everything feels so much better as a result.

If you have any points to add here, please feel free to do so by commenting!