Tag: high needs

Changes

On By NB GwenIn The JourneyLeave a comment

“Be the change that you wish to see in the world.” ― Mahatma Gandhi 

Sometimes I look at my life, my world, and I wonder how in the ever loving fawk I ended up where I am.

I love my family. I love them so much that it literally hurts at times because of the stress that I am under.

I had an ache deep in my chest most of yesterday. I spent most of the day crying, dealing with school and mental health for one of my children. I felt defeated all day. My child has a huge heart. My child means the world to me (all my children do). My child has broken my heart more times than I care to recount and has challenges that may never be solved.

Any parent of a high needs child can tell you that, as caregivers, it is often a thankless, stressful position to be in. You KNOW that they love you and you love them unconditionally, but their needs take precedence over so much of your life that other areas falter and fail. Burn out is common, exhaustion, stress born illnesses are common as well.

Changes are need – it’s hard. Oh gawd, I know it is hard. You HAVE to take time for YOU. No matter how infinitesimal, no matter what it is – you need to take that time and embrace it. No more guilt. Guilt is often a frequent emotion for parents.

I began knitting (again) as a form of ‘me’ time. I may not always get out of the house, but I can sit, watch Doctor Who, and knit and I feel at peace. It is my meditation, my time. It’s not a huge change, but change doesn’t always have to be! Baby steps.

Working towards a healthier me is also a step I have taken – eating healthier, going to bed earlier, getting more exercise. What seemed impossible just a few short months ago is so, so possible now! I’ve started to (FINALLY!) lose weigh after years of struggling, though I’ve had health challenges lately, in general that is improving too!

Make sure you have a support team – even if that is a team of one! You NEED someone. You can’t be the rock your child needs if you are crumbling to dust…Even mountains need a foundation to build on. I’m so fortunate that I have an amazing family network and friend network. There is ALWAYS someone I can talk to.

Let it out. Holding in that pain and hurt from your day will only make you feel worse and takes a toll on your health. It’s a hard lesson to learn, and I took the long way to learn it. I hold very little back anymore. It’s a change that I have learned with time.

Love yourself. This is one change that I am still struggling with. It is needed, and is probably one of the most difficult ones.

Let others help. Sometimes letting go is the most amazing thing you can do for your child. Allowing someone else to guide them is sometimes the most important thing that can happen. It sucks ass. As a parent, you want to be the ONE. That isn’t always possible.

I’m tired. I think that is all I have in me for today. If my advice helps even one parent of a special/high needs child than I am grateful and happy for it.

Peace all and remember to love yourself.

David Bowie – Changes

 

Sucker for Pain

On By NB GwenIn The Journey2 Comments

“Dying is easy. Anyone can throw themselves onto the pyre and rest a happy martyr. Enduring the suffering that comes with sacrifice is the real test.” ― Jay Kristoff, Stormdancer

After my last post I began thinking of the mindset parents of high needs children have.

I feel that I am a sucker for pain. Not physical, but emotional. I love all my children unconditionally, but can easily state my youngest (who is not high needs) is by far the easiest of the three. Mind you, my older two are teens on top of high needs – it’s so complicated for them, my heart breaks.

Friends ask me why I don’t go out or go out often. The simple answer is this – I’m drained. I work full-time. I had a chronic illness. I have two amazing teens who have a complicated diagnosis of emotional, behavioural, and learning issues.  I won’t call them disabilities. They are both extremely intelligent (as the assessing therapist and teachers have all agreed). That intelligence is a part of what gets them in trouble the most ironically. The know a lot of ‘stuff’ but lack the tools (emotionally, maturity wise) to utilize the information appropriately.

That’s generalizing a lot. It’s not an every day occurrence. I find that some weeks they are fan-freaking-tastic. Other weeks – I swear the world leaders opted to have them duke out WWIII in my living room. They so much as look at each other the wrong way and the battle begins.

Some people say that is normal for siblings. Yes, it is – but only to a point. What I am speaking of is the extremes. The wall punching, breaking glass extremes.

“They need more hardlined consequences.” *shy* if I had a dollar for every time I heard this…well, you know the drill. I wonder, sometimes, if people actually believe I hadn’t tried everything…children with the issues my two have do NOT respond to man-made ‘normal’ consequences. They just don’t. I can tell my two year old that if he colours on the table I will take his markers away and know that the next time he will be more prudent. My teens – it never worked…never. I tried. I tried everything.

My husband is the martyr in my life – no he’s not dead. He loves my older two as his own and has always been a wonderful step-dad to them. He listens. He cares. I can’t even begin to explain how much of a good person he was and is to have taken ALL of us on knowing how many issues we have. I told him up front and was honest about it all, he still loves us. WE are deserving of love. My teens more than I can say are so deserving of that love. When they have their good weeks – as I said above – they are amazing. Helpful, kind, considerate, polite to the point I have had strangers compliment my parenting! That felt wonderful.

I didn’t really know where I was going with today’s posts. I write this blog as a coping/healing mechanism for myself. Anyone who knows me knows that I am not the most open person, but this felt right.

If you are a parent dealing with high needs children – no matter the diagnosis – know you are not alone. Your child is NOT damaged, your child is NOT disabled, your child IS worth every step, your love WILL help even in the darkest times, YOU are worth it. You’re sanity and health needs must come first though, don’t make my mistake of neglecting yourself to the point of not knowing how to get back to you. If you can’t help yourself, you will never be able to help anyone else effectively (notice I added effectively – you can help, but you will be running on empty always as I do). Love yourself and allow yourself to be loved.

Stop being a sucker for pain, and start being a lover of healing and peace. Even if you can only do that for you – the side benefit is that your child WILL by default have a better chance as you will have more patience and calm.

Lil Wayne, Wiz Khalifa & Imagine Dragons w/ Logic & Ty Dolla $ign ft X Ambassadors – Sucker for Pain