Tolerance, compromise, understanding, acceptance, patience – I want those all to be very sharp tools in my shed.
CeeLo Green
MIA
Happy New Year to you all! I hope that you had a great Christmas and that 2019 has started off well for you.
I’ve been MIA and, for that, I’m sorry but I needed to concentrate on my family for a while. Christmas is a difficult time for us and so I decided to take some much needed family time.
The good news is that I’m now back. There have been some interesting developments recently both regarding our life as a special needs family and for me personally.
We have had to make a lot of compromises and it is this that I would really like to concentrate on today.
Diagnosis & EHCP – just the beginning
Our son has a diagnosis of ASD with Demand Avoidance Traits and this means that he requires a specialist educational placement. What we have found is that there are very few educational provisions that can cater to his needs which makes this no easy task.
One step forward
Having been lucky enough to find an educational setting that offered us a place based on his EHCP, we thought life would start to get back to normal.
Unfortunately, this hasn’t been the case.
Two steps back!
He is unable to access the school due to his high levels of anxiety. Now, it is my opinion that, by not following the recommendations within the EHCP, the placement has caused this issue but that it a whole different story.
What I would like to concentrate on is the effect that this has on us as a family.
So far
Our son has missed all of Year 7 and, to date, has done no more than about 10 hours (probably being generous here) of Year 8.
Separation anxiety
Due to his separation anxiety, he will not stay with anyone other than me and his dad (ideally me) which severely limits what we can do.
Shift work
My husband is a firefighter and, as such, works shifts. This has quite a dramatic effect on our life and, should you be interested in knowing more about this, please click here. When he is working, I need to be looking after our son which basically means, I am at home. Why? Because it is extremely difficult to get him to leave the house! He finds going out very stressful and becomes very anxious.
Not as great as it sounds
Now, I know that there are probably a lot of people out there thinking that they’d love to be able to stay at home but, believe me, it’s not all that it’s cracked up to be.
Everyday life…
Food shopping, doctors appointments, visiting friends etc can only be done if my husband is at home. Walking the dogs becomes a challenge! The knock on effect of this is that my husband and I rarely get to go out as a couple!
Leaving him at home on his own, even for a very short time, is just not an option for a variety of reasons and so, as I’m sure you can imagine, it is virtually impossible to do anything other than stay at home.
Financial strain…
From a financial point of view, this puts an immense strain on my husband. Alongside being a firefighter, he has various other jobs all of which are necessary to keep us afloat.
I’ve been self employed now for many years. Starting off in sales straight from college, I moved into horses and ended up running my own yard. This stopped when I found out that I was pregnant and so began the task of finding a family friendly income.
We had decided that I wanted to be able to look after our children (a wise decision based on our current situation) and therefore needed a business that could be worked from home.
After various endeavours I was lucky enough to find the business that I now have and I am truly grateful for the residual income that I am receiving. Why? Because I have been unable to work that business for quite a while yet it is still paying me. It will be picked up again once my husband retires or if our situation changes enough to afford me the opportunity.
Compromise – my blog
So, this post is about compromises. The first one is regarding my blog. My aim was to publish a post weekly but, unfortunately, this just did not work for me. So, I moved to fortnightly. This was much more manageable but, yet again, I’m having to compromise.
Going forward, in order to maintain the quality of my work and to help reduce the pressure that I place on myself, I’m moving to a monthly post. This will, hopefully, enable me to provide you, my readers, with the best quality that I can.
Compromise – work
The second compromise is a big one. I have had to accept that working my main business is just not going to happen at the moment. However, it is not in my nature to sit around doing nothing.
I’m constantly being told that I need to take some time for myself but, doing nothing just feels wrong. Doing something with no purpose feels wrong too. So, my compromise is that me time must also have another, practical, purpose. I love crafting. I’ve started making cards, wreaths and handbag charms The secondary purpose? I’m going to sell my creations. The beauty of crafting is that I can virtually stop what I’m doing at the drop of the hat which makes looking after my son much easier and less pressured.
Compromise – food
The next compromise that I’ve had to accept is the food that we eat. I adopted a clean eating approach to our diet which worked for a while. However, the variety of food does not suit our son. His diet is now very limited and dominated by all things yellow. This really does not sit well with me but, he has to eat! I was brought up to believe that all family members ate the same meal. I’ve had to accept that, at the moment, this just isn’t always possible. It is now not uncommon for me to have to cook at least two different meals at dinner time!
Compromise – accepting frustration
Finally, I’d like to round off with a general compromise that we have all had to make. It’s the compromise of accepting the frustration that we all feel at times. We have all had to accept that things will not always go according to plan. That as frustrating as things may be, our son can not help the way that he feels. The anxiety is a major part of his life and, at times, is all consuming. But, you know what? It’s just the way that it is.
The subject of compromise is huge one and this post goes nowhere near to covering it all but, I hope, it gives you a small glimpse into a few that we have made.
As time goes by, we adapt, we learn, we grow. Who knows what the future holds but, I for one, am excited to find out.
Until next time, remember that you ARE enough.
Lyn
PS I hope that you’ve found benefit in my first post of 2019 and, as always, I’d appreciate any comments and, remember, sharing is caring.
Tales From Mamaville
Lyn, I think you’re doing a bang-up job, especially considering the stresses and strains of your situation. It’s hard having to compromise all the time, especially when there is a detrimental effect on your day to day life, but it sounds like you are managing like an absolute champ. Good on you, and good luck for 2019 xxx #ItsOK
Author
Kate, thank you so much for your kind words. I’m not quite sure that i’d describe it as managing but I’m still here and fighting. xx #itsok
Oh Lyn, you are a true supermum and a real superhero. I cannot even begin to imagine how tough day-to-day life must be for you, but what I absolutely love about you and your posts is your positive attitude and your ‘can do’ approach to life. I often think of you – and other families like you – when I’m having a bad day, and that really puts things into perspective and gives me that push to go on. Even if it’s a monthly post, we love to read it honey… stay strong, you are doing a FABULOUS job as always. Much love and thanks for sharing with us at #itsok
Author
Nicole, you’ve made me cry! As I write this I’m attempting to function on 3 hours sleep. In reality, I’m not sure that I can be called a supermum but, what I am is a mum that is desperately trying to do my best for my kids. I really appreciate your comment and it gives me comfort in that I’m achieving my goal of helping others. xxx #itsok
A mum who is doing her level best for her kids, despite all the difficulties, is a supermum love. It’s easier to just put your hands up and say ‘I can’t’, but you are going on, and doing so much more too. God bless!
Author
Thank you so much for your kind words. Sometimes it takes someone that isn’t connected to make us realise how much we are doing. #itsok
Lyn,
Hi, I hope you’re doing ok. I just want to say that reading this post was like looking in the mirror. I have two children, one with what I would describe as ‘classic’ Autism and another with PDA Autism.
I too am making all of the compromises you mention above. I am unable to work outside of home due to the special care my children require. I’ve been trying to start a home business (including a blog) for years now with little success because I can’t manage to dedicate the time required to put into it. I make 2-3 different breakfasts, lunches and dinners Every. Single. Day. I was also bought up with all family members eating the same meal and this is an ideal I’ve struggled to let go (it’s a dream of mine but I doubt it’s ever going to happen).
I live in Australia and we are currently having two weeks of school holidays and we have done nothing but sit at home, I am unable to take my kids anywhere unless my husband, mother or sister take a day off work to accompany me.
It’s always comforting to hear about others going through the same thing as you, so thank you for sharing your struggles 🙂
Author
If I were to say that it is comforting to hear your story, would you understand what I mean? Sometimes the special needs journey is a really lonely one. More often than not, those not involved, have little concept of what you go through on a daily basis. I feel your pain and, whilst not able to be there in person for you, I’m sympathising and sending thoughts of support. As a special needs community we need to stick together. I’m currently battling with the Local Authority and its not pretty but, yet again, I find myself putting on my big girl knickers and bracing for impact. Stay strong.
Yes I absolutely understand. It makes me feel just a little less lonely knowing that there’s someone else out there fighting the same battles I am every day.
I’m praying for strength for you in your battle with the Local Authority. You stay strong too!
Author
Thank you Samantha. You stay strong too.