Don’t Judge Me! Why Special Needs Parents Need To Take Their Own Advice!

We have all seen the lovely quotes on social media, “Don’t judge anyone else f40b6aa069e0a4d93d7fa67356a51361eor everyone is fighting their own battles”, you’ve seen them right?

I have actually posted one of these quotes and have totally believed in it. I have been judged on the way I have dealt with situations, the way I have coped with what life has thrown at me or even the decisions I have made relating to Billy. None of these things affected anyone other than myself and Billy (mostly) however I was still judged which left me with a huge sense of self-doubt and guilt. Not very nice.

I will admit I have also judged in the past. When I was in the first couple of years of caring for Billy, I  overheard a conversation two special needs parents were having. They were talking about their own children and the little amount of therapy based activities they did at home. One mother said “I let my child watch TV whenever he wants, as his home is where he should feel happiest.” I immediately judged. It may have been, because it was the beginning of my journey and there was lots of therapy to teach Billy, new skills, I was right amongst it.

It wasn’t until a year or so later, I thought of those mothers again. I had been beating my head against a brick wall trying to get Billy to do craft activities or pretend play when all Billy wanted to do was sort the pegs in to colour coded groups. I realised Billy was an individual, he would learn his way not the way I wanted him to. We all learn easier if we are doing something we love.

A few days ago I witnessed another special needs judgement. I was reading a post on social media. It was on a “support group” for parents who have children with Autism. It made me sad as it was from a mother in the U.S who had just made the decision to have her child put into care. She signed it “devil women” and throughout the post expressed her guilt and almost begged for reassurance she had made the right decision. Her child was very violent and was reaching puberty which was also proving to be a problem as she had three other children who were girls. The care was not permanent rather a three-month trial and she even posted a letter she received from her child in which he told her how much he loved her and how she was a great mum. All the comments the post received were positive and encouraging, except for one.

One is all that is needed for a person who is already heartbroken and struggling with how guilty they feel. One is all that is needed for a person who is almost begging for someone to tell them it is going to be ok, to just give up. One is all that is needed to affect your mental health which could impact negatively on your life.

I have made a conscious effort not to judge others. I’m sure I have and will again, I think it’s human nature, although I will make a bigger effort to always keep my opinions  to myself when I don’t agree. If I am asked for an opinion, I will always make an effort to remember that we are all different, we have different challenges, we have different families, and we all have different levels at which we can cope.

I will continue to post quotes on judging others, not because I never judge but to remind all of us that a little bit of thought and compassion is always needed before we use our mouths to give our opinions.

Have you been judged before or have you judged others and later found yourself in the same position? Leave a comment and give your insights below.

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Special Needs Parenting Can Be A Lonely Life

There is nothing like a special occasion such as Easter to remind you how lonely special needs parenting can be.

Easter this year was no different to other speimagecial occasions. My extended family gathered together at one chosen family member’s home, and we spent the day having lunch and enjoying each other’s company. That’s what these occasions are all about, family. What about when you have a special needs child? What about when this child is uncomfortable with crowds and noise and retreats to a room or wants to go home to get back to the safe zone?

This is how I spend these occasions. Every single one of them. I’m not mad, I don’t feel sorry for myself and I am not concerned with what I am missing out on. However, I didn’t always feel that way and I still don’t always feel that way.

Once upon a time, I did feel sorry for me.  I felt angry because I was the one that always had to miss out. I felt lonely because I knew it was impossible for my family to understand how I felt in that room. I wondered why I was there. I wondered if anyone was asking about me. I wondered if anyone felt interested in talking to me. I felt totally ripped off and totally alone.

Then as Billy started to get older, I realised that I hadn’t been ripped off at all. I had experienced all those things and still do. Mostly I realised it was Billy who should have the self-pity. It was Billy that should have held the anger. Billy has never had a conversation with another child. He has never played a ball game with another child. He has never had another child as a friend that looks for him to come and play. Yet Billy was happy to just be there with me.

Billy and I sat in a room together over Easter, and his constant smile and laughter reminded me that I am not alone on these days. I have my Billyboy. He makes me smile, laugh, and mostly he shows me I am loved and completely needed. He also helps me to see the beauty in the small things and how at the end of your life, these are the times that will be cherished. If I am included in these moments with Billy, what more could I ask for?

How do you cope with these occasions? Let me know by leaving a comment.

11 things I do daily that remind me I am a special needs mum!

Parenting a child with special needs can feel like living in a bubble at times.

It’s actually really easy to forget your child is different to anyone else. That may sound unbelievable but it is true. You have developed a routine, not always by choice but what do you do, shit happens. Then you go along your merry way, living your merry way.

Recently I had a friend visit. This friend is not a close friend, and hasn’t really witnessed the way we live… It was that day, I realised there are many differences in parenting a special needs child. It must have been the way my friend ducked for cover as I leapt past her to investigate the brown smudge on the fit ball. Extra vigilance is required, along with extra time, extra interruptions and loads more to consider.

I sat down and thought about all those little things I do or need to consider because my child is Billy.

1. I vacuum and mop my floors every single night. Actually there are many days I do this throughout the day as well! If you have a child with Autism you may also have a child that is equal to a tornado. Billy is so very messy and if I fail to vacuum and mop, I will need to catch mice instead… Not an option, I don’t do mice!

2. I have about 3 secs to get Billy a drink. If I happen to be preoccupied, like using the bathroom, the jug of cordial is on the kitchen floor.

3. My house is equivalent to Fort Knox. Children with Autism wander, so when you visit please take note of the fire escape plan on my fridge as my doors are always key locked.

4. I am a master hider. Billy is completely obsessed with any device that begins with i, so hiding my iPhone and iPad is a must! If I don’t, it will cost me in data usage or repairs.

5. Always put your clothes away immediately after folding. Yep, I have learnt after spending hours folding the basket of clothes that has almost become another piece of furniture, to put them away or find them thrown across the room.

6. When invited somewhere, always have your own entertainment. It can be pretty boring in the room Billy has retreated to because he is uncomfortable with the environment, so I always have something to keep me entertained.

7. If you need your glasses to read something, hide! Billy has this obsession with glasses. If you get spotted wearing them, they are ripped from your face and thrown at least 5 metres.

8. If it’s brown, smell it. If you visit and you are mid conversation, please excuse me if I happen to leap through mid-air to investigate the brown smudges on my tiles, close to where Billy is, umm sitting.

9. Expect the unexpected. I have become an expert in investigating nudity. I apologise now to my daughters lovely friends who may have been taken back on the few occasions Billy was naked before I could intervene.

10. I have T.V time. I’m talking about myself here. Regardless of whether Billy is watching T.V or not, I am not allowed to touch the foxtel remote until he is in bed, ASLEEP!

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11. Always look on the ground.We don’t have a 3 second rule. If it’s on the ground, and resembles anything editable, it’s in Billy’s sights. I need to be on top of this one, as I have discovered how much a Christmas Beetle looks like a chocolate chip.

Above all these things and more, there is one thing that I do which makes all the extra effort worth it. I feel like we have won a gold medal every time Billy does something new such as, making a different sound, letting me brush his hair or following a new instruction.

So yes I need to consider some things that may be different from a family without a special needs child, but I also get rewarded like a champion for it. How can that not be worth it?

Can you relate to any of these? Tell us what you do differently.

What every special needs parent wishes you knew!

How many times have you heard a special needs parent say the next line?

“My family & friends just don’t understand.”

I have said it, plenty of times. Have you? I also question it over and over again.  I ask myself “well how could they understand completely?”

Did you understand like you do now you are living it?

How often do special needs parents pour their hearts out to their family and friends? Maybe we find it easier to assume they know, or maybe we want them to think we always have it together. We may cope nicely every day, but that doesn’t mean our children no longer have special needs, so there are some feelings that will stick with us forever.

  • The pain we felt when we were told the diagnosis, will never go away. We have accepted the diagnosis. We love our children, we accept their differences and we celebrate them. However, we will always grieve for the hopes and dreams we had for our children. For some of us, our children may never experience the many wonderful things in life, such as marriage, children of their own, and a great career. We  “But I thought you were in a good place now”, remember life does go on but scars remain forever.
  • A part of us feels excluded from our closest family and friends. Please don’t assume that is because of something they are doing. It’s not our families or our actions that are causing this. It is simply because our live’s have changed and are completely different to the people we want to be around. As our friends children grow up, their opinion of a good outing becomes very different to ours. A friend’s twelve-year-old son will not be willing to spend the day at the play-centre because our child still loves it. Slowly get together’s become few and far between.
  • We know what is best for our children and that doesn’t mean we are alienating ourselves from the world.  Many special needs parent’s will hear this from a close friend or sibling. Our best friends have said “we invite you and you don’t attend”, yes,  because we know our children and we have more than likely already been through the meltdown that will occur. It would be better if our friends could visit us at home, where our children are most comfortable and we will actually be able to sit down and enjoy each others company.
  • The hole in our heart will never close. We will always have sadness and worries that our friends and even family will never understand. Don’t take that the wrong way, we don’t feel sorry for ourselves or blame anyone for that. The only thing we expect is support from our circle’s. If we are worried about dying, we need our friends to listen rather than question why we are thinking negative thoughts, if we feel sad because our children have never been invited to a birthday party we need empathy rather than our friends listing all the family members that have invited us, if we need to leave early or arrive late, we need patience rather than resentment. and if we need to spend a day crying around the house, we need you to know that it does not mean we are not coping but simply that we may have dealt with several meltdowns, negative comments from strangers and potentially many other situations that day.

As much as our family and friends try to understand the special needs parent, it is impossible, as to truly understand something means having an experience in it . We special needs parents, don’t expect that understanding and do not hold any resentment because of it. However if friends can try to support our decisions and listen to us when we talk about how we are feeling, we would have all the understanding we need.

 

Do you have any points to add? Let us know what you would like from your family & closest friends.