Our little, but big Challenge

This is such a hard post to share. To share something very personal and to be vulnerable. This though is the reality of my life right now, living with a child with ‘high’ needs.

Now I don’t mean to write this to put myself on the level of anyone else that has a child with ‘Special’ needs. You are truly amazing for what you do. Annabelle has not been diagnosed with anything that would put us in this category yet. We are still in the process of getting her assessed. It is looking likely that she will have some form of formal ‘issues’. However for now, this is our version of hard and for us it’s a challenge.

When Annabelle was just three weeks old, she was pretty much sleeping through the night. She would go to bed around 6pm-6:30pm and would sleep through to about 3am. I would feed her for about 10mins and we would all wake somewhere after 6am. This lasted for weeks. I would get so many comments, “You look great”, “Wow, you’re really handling this newborn gig” etc. I mean it definitely helps when you are getting a good amount of sleep each night. Then we hit 11 weeks. Annabelle went through her 3-month sleep regression and we didn’t recover. Annabelle proceeded to wake multiple times a night for months and months. People told us to ‘cry it out’, teach her to ‘self-settle’, stop ‘night feeds’, you name it, we tried it. Always having success and within 3 weeks it always going back to the way it was. On top of that she would have a 37min nap each day (yep, you read right….37 minutes). With the odd occasion of something longer. It was only when she turned Two and we returned from Bali that she started napping for 2hrs a day. This was unheard of and completely unlike her.

Fast forward now and she is 3yrs old and sleeps 8-9hrs MAX overnight and generally with no day nap. This is exhausting. On top of that she is the most energetic kid I have ever met. I would think that most people that have met her and spent time with her would say something similar. She is ALWAYS ready to go. If someone is happy to read her a book at 6am or 10pm she is there on your lap ready to listen and chat ALLLLLLLL about it. Sometimes it’s a good thing. We can out to an event and stay until late and she will happily party with you. Unfortunately, this is a rare occasion and she obviously thinks it’s important to be party ready Every. Single. Day.

Annabelle is a delightful and funny little girl. She is always ready to interact and play with you. She is very clever at knowing how to negotiate and she is always up for a game of chase. While there are so many traits that I adore and treasure about Annabelle there are some that are challenging.

Annabelle has an incredibly high need for adult interaction. She is extremely active and will outrun everyone. Annabelle does not really have a passion for anything crafty, ‘educational’ learning, activities like blocks, dolls and has only just very recently had any interest in her play kitchen or doll house. Annabelle also is very quick to lose interest in things. Dance class, play group, running group, library, craft lessons and even parks. She would however happily walk/run the paths of the suburbs for an incredibly long time. I’ve also never seen her turn down a chance to be chased. No matter how many times you do it with her. These energy demands, lack of resources to fill her interests along with bigger emotions than a ‘typical’ three-year-old make for a challenging day.

The reality of this is something I never expected when I became a parent. It definitely wasn’t something that I heard other mums speak about. It took me a while to even recognise that this behaviour wasn’t very ‘normal’. After a couple of very hard weeks I wanted to share the honest truth of how it affects me.

For Annabelle it doesn’t matter what time of day it is, she is requiring something. Constant demands and constant melt downs. Each day it is like navigating a mine field, a delicate balance of picking your battles. This will happen for so many of the minutes she is awake. No nap, no quiet time, no break.

Sometimes I go to bed numb, without the energy left to even cry about it. My exhaustion is something unique and something that I haven’t really experienced to this degree before. It’s not like regular sleep deprivation or genuine physical exhaustion. It is a soul-sucking, brain-fried struggle. Sometimes I feel like I’m in Harry Potter and the Prisoner of Azkaban where the dementors are hovering and continually draining every last bit of life from me. Now I know that sounds bleak and intense and I truly love Annabelle with my entire being. Sometimes though when we go through a ‘rough’ patch it can feel like this every day on repeat. To the point now where we don’t really want to go to anyone’s house, take her out places, have anyone over. It’s just too exhausting.

What can make this situation worse is the constant judgment that comes with it. From family, friends, acquaintances and strangers. People telling us in some way that it is because of our ‘bad’ parenting or lack of. Now I am not afraid to admit that we are not perfect parents. We sure have lots to learn but we love our daughter. We research, implement, trial, get down to her level, stay with her in times of inner struggle and on occasion lose our cool. We work SO hard to try and help her, care for her and give her mind and body what it needs to be healthy and whole.

However, it is incredibly debilitating going out and about and feeling like we are a walking opportunity for people to judge. People judging us because she’s behaving in a way they don’t like, or think is okay. Looking at us as if we are irresponsible and ‘loose’ parents.

Or worse, seeing that perhaps she has some challenges that need attention and lowering her value and ours because of it. Seeing her trials as a failure on herself and us. I would love for some of these people to walk in our shoes for a short while and still make the same judgments. I often feel it’s hard because she doesn’t have a noticeable disability that she must be ‘fine’. That having something you can physically see makes it justifiable. It reminds me of mental illnesses. If people see someone with an amputated limb or in a wheelchair that’s one thing, but someone with depression, anxiety or any of the debilitating mental health issues, they are just ‘weak’ or need to just ‘be happy’ or ‘not worry’. Both can be crippling whether or not you can see it.

The truth is, what I wish is for, are people who are quicker to offer help than to judge. Quicker to understand our situation than to judge. Quicker to love and support us. We are doing this SO alone and it is tough.

If we are lucky, we will get to have a family catch up once a fortnight. This includes a couple of brief hours spending time together, it is not usually a time for ‘help, babysitting or relief for us. We do get that from time to time from people and we are so grateful for every offer we get. Unfortunately though, that’s it for us. No siblings, no friends, no Auntie’s (except one special one), no Uncles….that are around, just us.

Now when we chose to have children, we did so with the knowledge that we wouldn’t be relying on family to assist us to essentially ‘make it through’. We still don’t rely on family, but boy would it make life a little bit easier to manage if we did. I guess these are the things you don’t know before you have children. What type of little person will be entering your family and what type of needs they will come with. Sometimes I feel like a terrible mother because I can’t do things that other mothers can do. Not that there is competition or a need to be like others but I am referring to the more basic areas. My child just doesn’t function like others and therefore I cannot use the ‘regular’ methods many other parents use. This weighs heavily on me. It makes me incredibly nervous for Claire. Wondering if I will fail in my efforts to give her what she needs.

My thoughts constantly cycle through thinking, what if my parenting style has changed and it affects the way I parent Claire? How can I learn to parent two different children in two different ways? It’s hard not to have self-doubt that Annabelle’s issues are my fault. Perhaps I haven’t tried hard enough over the years. These thoughts circle around and cloud my success sometimes. Sometimes it takes a weekend of both of us working until we are utterly exhausted to remember that there isn’t anything more we could do to have things run smoother. Annabelle is the child she is right now and we just have to keep trying to get through each day.

Sometimes I wish when I’m chasing her around the shops. Trying to gather her up so I can re-explain what my expectations are and the consequences she can choose that someone would just buy me a chocolate and tell me I’m doing a good job. To instead of making the comment of ‘Woah, she is so fast’ to maybe hop up and help me gather her by blocking her access off without judging on why I’ve ‘let’ her run away. For close family and friends at get togethers to offer to keep their eyes on her for just 15mins so I can have a quick mental and physical break from following her around to ensure she isn’t breaking something, jumping on something, escaping out of somewhere, or getting to a place where a meltdown is going to happen.

I imagine that if I am feeling this way there are probably a lot of other parents that are feeling this way too. Everyone has energy and the choice on where to place it.
Please choose to be kind in whatever way you can rather than to judge. I’m not seeking a chocolate bar from everyone at every interaction, although that does sound nice. It could be a comment face to face or online. It could be recognising that this is challenging for us. It could be a big sigh and a hug, high 5, thumbs up or a look showing your support/recognition for our efforts.

Choose to be KIND, Choose to be BRAVE, Choose to LOVE.

It’s incredibly hard to be vulnerable like this. To share a private struggle of ours. To open ourselves to even more judgment. To show our not so perfect picture of being a family. Whether or not we share it, this is still a part of our lives and if I can in any way have the opportunity to raise awareness for KINDNESS than I will take it. Perhaps you have a well-behaved child and don’t understand our situation. Perhaps you’re reading this and thinking ‘Oh do I know!’. Perhaps you don’t have children yet and think you won’t ever have to deal with this. It reminds me of part of an article I love. “We sometimes look at others with an incomplete or inaccurate understanding. We may focus on the differences and perceived flaws in those around us…The day will come when we will have a complete understanding of others’ hearts and will be grateful to have mercy extended to us” – Jean B Bingham

I repeat….. Choose to be KIND, Choose to be BRAVE, Choose to LOVE.

My daughter is an integral part of my soul. She is here for me to love. She is a wanted and needed child in our home. She is three. She has potential. She is supported. She is mine.

She is loved and so are you.
Love Sarah Kay, xx
 
P.s. Leave a comment of some great mum tips, advice, or share if you’re in the same boat as me. I would love to hear from you.