There. I’ve said it.
I’m the mom of a special needs child. Or rather a child who has special needs.
Jamie has SPD, ODD & ADHD. It’s a whole lot of letters which stands means he has a sensory processing disorder. He is tactile defensive, he has auditory sensitivities which he masks by being very loud himself, he has visual perception and fine motor coordination difficulties, he seeks proprioceptive and vestibular input and has an excessive need for movement, he reacts aggressively when overstimulated. He has Attention Deficit Hyperactivity Disorder, he doesn’t have inattention problems, but rather on the hyperactive/impulsive side of things. ODD stands for Oppositional Defiant Disorder which is a self explanatory term and it means it makes parenting a whole lot harder.
It took more than a year for the realization to set in.
And do you want to know what? It’s fucking hard. It’s a lonely journey. It doesn’t make you love your child any less, but so much more. You feel helpless. It puts so much strain on you in so many aspects. People don’t understand. People tell you they want to help, but they don’t … or can’t … I don’t know, but I just know they don’t. You learn to differentiate between those who really cares and those who don’t. People pass judgement so easily. Everyone has an opinion and they can’t help but tell you, even if it offends.
I’ve been meaning to write this blog post for so long. But didn’t know how to start, so today I’m just starting and I’m just pinning down whatever comes to mind. Blogs and social media in general is like a photo album. You take so many photos every day, but you only paste the good ones in your album. Just like that I generally just post about the beautiful, the heartwarming moments. Not today though, today I will be honest about what it feels like to be a special needs parent.
Being a special needs parent is like juggling with way too many balls up in the air, but you have to keep them all in the air, because they’re so fragile and so important. There’s your marriage which is crucial for your family’s well-being. There’s your work and you need the income to pay for everything and especially the extra medical expenses as medical aid pays for squat. There’s your children of course, your house and everything that needs to get done – cooking, cleaning, laundry, shopping, bills, pets, your sanity, family, friends, obligations, health and fitness, and so much more. And it’s impossible to not drop a ball, you just need to make sure you don’t drop yourself in the process. So every day is a juggle, every day is a struggle.
To see your child battle at every day life is devastating. To see him being rejected by other children, friends and family members because he is different and isn’t able to behave in a certain way is a nightmare. I can’t help but wonder (or rather worry) in despair at which point he will give up on trying to form relationships. Because people will keep on disappointing. There are so many negatives, I can write a book about it, never mind a blog post – we have had so many disappointments, so many heartbreaking happenings, but it doesn’t help to dwell on it.
Instead it’s so important to focus on the positive.
As a special needs parent I am thankful for:
- Jamie’s teacher who is an absolute gem and really cares for him and tries to help him.
- His Occupational Therapist who has been there for us since last year.
- His sensory blanket which helps him to sleep
- Chewing gum – don’t ask me why, but the stimulation helps in some way.
- A special friend who knows Jamie since he was a newborn and is always patient with him and is a great source of support to me.
- Another friend who is also an ADHD mom who understands and cares, we can cry together over a glass of wine.
- Yet another old friend who is also an ADHD/ODD mom – we only recently started to chat, but we are so in the exact same boat.
- Support groups on Facebook
- Any body who offers support in any way.
- Running, it really helps me clear my head.
- The unconditional love of both my children.
- Knowing that I’m not alone in it, that I have my hubby – we are a team of two.
- My hopes and dreams for my boy
The battle continues. Today we see someone new, hopefully someone with compassion to help us help Jamie. We really need a breakthrough. xx
*** UPDATE: Breakthrough found! Awesome doc, new diagnosis – new blog post to follow as soon as I gathered myself enough to sit and write it xx ***