Dear (Additional Needs) Parent

I know as a parent we all cry at one time or another over our child, each of us for very different reasons, but all of us because we love them so very much. Sometimes we cry happy tears, then sometimes tears of frustration stain our faces, and other times it’s because our heart breaks for them.

Every family suffers it’s own hardships and circumstances, some are temporary, some are long lasting, some of them are the cards life dealt you, and others are devastatingly permanent, but one thing remains to get us all through these hard times; love. Above anything else, just love.

Love can change your perspective on almost anything, and does the world of good for your soul, and sometimes it’s the only thing you have to offer.

One of my boys suffers with severe anxiety as well as Sensory Processing Disorder and is currently under assessment to see where he is on the autistic spectrum, and it often breaks my heart watching him struggle knowing that I cannot change things for him. All I can do is support him, guide him, and show him unconditional love. I cannot change the way his brain functions, but I’ve had a huge role to play in the way his heart functions. I fill it with love, encouragement, praise, solutions, confidence, and I try my hardest to ensure he has a healthy self-esteem.

Some days I can conquer the world with him, and we navigate our way through the problems, and the thoughts, and the behaviours, but other days I cry for him after hours of meltdowns and aggression. I peek at him whilst he is drifting off to sleep and I hear him sob. I ask him what’s wrong. Sometimes he doesn’t even know. Other times he has dreams that were so nice he didn’t want to wake from them, or dreams that were so scary he thinks they are real. Sometimes he dreams of another boy just like him who understands him and hugs him tight. This is the one that gets me in the gut and upsets me to the core, he must feel lonely, in his own world, and like he isn’t understood. I hate this feeling he has so much but all I can do is reassure him, validate his feelings and reaffirm his worth.

Some days I watch him play Lego, his familiar territory. He sets up scenes and recreates movie scenes. His eye for detail and accuracy astounds me, but sometimes it scares me. His little brain is so full and he is so hard on himself if any detail is wrong. I wish he would be easier on himself, but all I can do is love him, reassure him that it’s ok to think how he does, and try and extend his play to help him be more spontaneous. It’s hard teaching him that perfection is not always possible, his brain craves perfection at all costs.

School holidays are another time that often renders my heart broken, the dreaded night before the new term begins especially. The anxiety grips his tummy and he lashes out at everything and everyone. He goes into full flight or fight mode and nothing can soothe him, we have to ride the wave and hope it ends sooner rather than later. All we can do is reassure him, cuddle him, talk things through. It hurts my heart that I cannot help further.

There are so any routines and habits that have to happen in order for his world to feel at peace, some of them are cute little quirks that we all have, but some are a matter of urgency and must be done, and done correctly. I wish I could switch his little mind off and give him a rest. He must be so tired sometimes of the constant battles and urges.

As a parent it is heartbreaking not being able to help your child, and sometimes it gets too much. But that’s ok, we are not robots and we have feelings, strong feelings.

But, we have to be warriors for our children, and not worriers! Worrying drains the life from you, and your child needs that life, they need your hope and your reassurance. They need to share your courage when they cannot understand their own world.

I worry so often that I’m failing my boys, but when push comes to shove I’d give my last breath if it meant they’d get one more. I’d fight to my death for them. And that is what counts.

Sometimes I don’t have a solution or an answer, but I always have a cuddle, I always have a kind word, and I always have love. Love has seen us through many tough times, and I know it will continue to because it’s the only thing that never grows tired. My hope dwindles, my soul gets weary, my heart gets broken, but my love remains strong, and always will.

Additional needs parents you do an amazing job, and it’s a big learning curve too, keep going, keep loving, keep being their warrior! Never worry about being ‘normal’. Normal doesn’t exist! What’s normal for the spider is chaos for the fly!

I Cry for my Child with Sensory Processing Disorder

My 4yo has Sensory Processing Disorder (SPD), his life is drastically different from other children who do not have the disorder, yet he is currently unaware of this. He starts school in a few weeks and I know soon he will start to realise he is a little different from the majority of his peers. I am determined that he will celebrate his differences and not let them chip away at his self esteem.

When I think about him starting school my eyes well with tears. Sad tears. I am scared. Scared for him, scared about him going into a world where people don’t know about or understand his little quirks, his thought processes, his dislikes, his triggers, or how his little mind works. It has taken me such a long time to figure out how to avoid a big proportion of meltdowns, and how to calm him when his anxiety is in overdrive – I’m his momma, it’s my job. BUT, I won’t be there for almost 7 hours of his day, and that thought rips apart my heart. As I write this the tears are streaming down my cheeks, but I know I need to write this and let other parents know they are not alone in their worries.

I often have a little cry about my sons SPD, not as much as I used to. I sometimes get overwhelmed with how much his life is effected. My heart aches for him. I see how much he wants to do things but his little mind just will not let him take that leap.

I see how much he wants to go on the big wavy slides with his brother, but he can’t sit in the scratchy tweed sack, that stops you getting hurt, because it looks itchy and doesn’t feel nice.

I see how much anxiety it causes him when he knows he has to have his nails clipped.

I see how brave he has to be to try out a new food, it’s not simply a case of putting it in his mouth, I see the fear, but I do also see his courage.

I watch him set up his toys into neat, symmetrical scenes, but never play with them, and I watch his little spirit crumple as someone else decides to play with them because he cannot bring himself to. My heart feels saddened.

I feel sad that his little mind has to verbally process his day for 90 minutes before he can attempt sleep. I long for this little boy of mine to be able to relax, and turn off his tornado mind.

I watch him get carried away in role-play and constantly be a state of make-believe, I worry people won’t understand it’s his way of playing.

I worry other people won’t understand how obsessed he is with Lego, every waking moment is filled with Lego, Lego movies, Lego sets, Lego, Lego, Lego. He doesn’t understand not everyone loves Lego like he does.

My heart breaks seeing how his anxiety is in overdrive regarding using unfamiliar toilets. I hate that he would rather be in immense pain then use one, and that he has no control over this. His brain will not let him use a public toilet. His heart races. SPD sucks!

I worry, I worry a lot, too much, but it goes with the territory I guess.

Sometimes I cry because I am happy, happy that my boy conquered a fear; letting go of me in the pool, trying a previously loathed food, sitting on a not-so-clean stool, going to sleep within 10 minutes instead of the usual 90, holding someone s hand other than mommas, having a band-aid on a cut, using an unfamiliar toilet, using his words to explain a worry instead of having a meltdown etc.

Sometimes I cry because my heart aches for him to be ‘normal’. It is very hard to accept that he will never have a life that is normal by society’s definition, but I have learnt to accept that it is normal by his definition. He is normal, a new normal. This is his journey, our journey, and I will support him along every step of the way.

Sometimes I look at other children who don’t have SPD and, for a second, sometimes I wish my son was like them, without a care in the world, happy and care-free, but then I give myself a big slap around the face. How dare I wish for anything different?! I am blessed beyond measure to be gifted this little boy to cherish and help grow into a fine young man, and I will do the best job I can. My boy, my family, our story, is unique to us and we will write it how we see fit. Life is too short to sit wondering about milestones and all the ifs-and-buts in the world won’t change the facts surrounding me.

Mommas, it’s ok to cry. It’s ok to cry because you’re sad, or because you’re heart breaks seeing the struggles of your child with SPD, it’s ok to fear the future, it’s ok to be worried, BUT it’s not ok to stay in Cryville for more than a minute or two. We all need to visit there sometimes, and it’s part of the acceptance process, but it’s not a destination, not even a short term holiday spot. It is your job to fill your child’s self-esteem bucket to overflowing, and wallowing in self-pity or sympathy-pity will not allow for that to happen. You have to be brave, courageous, and champion your new version of normal.

Pick up on every positive, and work around all the negatives. We now have a plastic bottle for public toilet situations, and it has worked wonders! And school? Well, one day at a time. I could sit here worrying about all the what-ifs and whens but in reality nothing will change by worrying about it. If I spend my time worrying about the new school chances are my child is going to pick up on it, and hell will freeze over before I let that happen. I am a momma bear who will protect her cubs no matter what, and that means I must never let my child with SPD think I feel sorry for him. I don’t. He doesn’t need pity. He needs a cheerleader, a supporter, a coach, a mentor, and as many cuddles as he likes.

I am not going to worry if he will make new friends, I am going to send him to school to be a friend, to look for the kids who have nobody. I am not going to worry if people will be kind to him, I am going to send him to school to be kind. I am not going to worry if people will speak nicely to him, I am going to send him to school knowing that he needs to speak nice to others. Work on everything from a positive point of view, it’ll help your child and you so much more.

So, mommas, don’t feel guilty for crying, there is a lot of therapy in tears, but don’t linger there, pick up your sword and keep on fighting. I know it’s lonely, but you are not alone, remember that.

Head high.

To The Mum Of The Child With SPD

I am not writing this post to plaster my private life all over the world wide web. I respect my children’s rights to privacy. I’m their biggest protector, believe me. I cannot, however, get rid of this message I feel compelled to share. It has taken all of my courage to write this, so if you read it please know it was hard to hit the publish button for so many reasons.

I have learnt to follow my gut instinct over the last five years and it’s never failed me yet. Over the last 15 months my gut has been telling me that my 4yo may not be as high maintenance as I thought, and that it runs a lot deeper than just being a sensitive soul. Maybe my gut has been telling me a lot longer than that, but I was in denial.

That’s the thing about the term ‘special needs’ – you are accepting of everybody else’s children under that definition,  as long as it’s not your own children. I guess you don’t want to accept that life is never going to be normal by society’s standards and normal milestones standards. It’s hard to embrace it.

Having a child with additional needs, with or without a diagnosis, is a hard pill to swallow. Not many people will admit that. But it’s true. You go through a grieving period. You think of everything that cannot be done, the places you can’t go, the milestones that may never be reached. You worry about bullies and stigma. You fret about the future. I’m not sure this grieving period has a time-scale either, so you’re stuck there as long as you allow yourself to be. We allow our thinking to pave the future in our subconscious. We make excuses in public. We feel awkward. We apologise, a lot.

I admit I struggled when I realised my child may have Sensory Processing Disorder (SPD) and some autistic traits. My child? No, not my child; yet he ticked every box! Things started to make sense. He wasn’t just sensitive, he was overloaded and couldn’t cope. They weren’t tantrums 40 times a day, they were meltdowns from sensory overload. He wasn’t sniffing everything just because. He wasn’t repeating everything to be rude, it was echolalia. He wasn’t being awkward about his clothes being just right. He wasn’t being naughty when he had a screaming fit because plans changed. He wasn’t being silly about refusing his nails being cut. He wasn’t just sensitive when smells made him cry. He was overloaded. His senses are literally in control (or out of control) of his every thought. This breaks my heart. I cannot fix it. His momma cannot fix it.

How as a momma did I not know something was wrong? I’d have done things so differently. I would have been more patient. I wouldn’t have made him have time-out for every meltdown that occurred. I wouldn’t have yelled when he wouldn’t try a new recipe. I wouldn’t tell him he was rude when he wouldn’t acknowledge people or say goodbye.  I could kick myself now looking back. How did I not know?! But life is too short for regrets.

I was in denial for a long time. I was grieving the life I thought I’d lost, but I was wrong. Nothing has changed, except my knowledge and recognition. This is the life we have, my boy has. He’s not defined by a label. His brain may be wired a little differently to the average person, but that doesn’t make him weird or less of a person, and as soon as I excepted that we were able to approach things differently.

When I first began piecing things to together and understanding that my son most likely had SPD I used to cry in private, I used to sob.

I felt like my heart was being torn in two. I think it was part shock and part relief. Shock that my baby, my sweet innocent boy had something wrong, and relief that finally we didn’t have to plod along and struggle our way through each day alone anymore.

I think when our children are diagnosed with disorders we, as parents, are often so worried about the stigma attached to those disorders that we are the ones with the actual problem. We fret so much about what others think that we often do more harm than good. We have to except the circumstances ourselves, and once we do that nothing will hinder our perception of the disorders. We have a huge responsibility as a parent to ensure that our kids childhoods are not something they are going to have to spend the majority of their adulthood recovering from.

After researching SPD I understood more and more about the challenges my boy was facing, and I became prouder by the second for his accomplishments. Daily life is overwhelming for him sometimes, but he tries so hard. Even simple tasks such as getting dressed are a big accomplishment. I find myself begging the Sock God to be kind and not make the seams irritating today, I hold my breath when labels meet skin. The thought of asking to trim his nails sends shudders down my spine. I am constantly holding my breath waiting for the next reaction armed with calming words and cuddles.

I try and be as patient as possible. That is a key factor with SPD. Anxiety levels are already on the edge daily, and an impatient momma will not help. I’d like to say I have perfected this, but that would be lying. Some days I yell. Some days I cry. Some days I feel mentally exhausted. Some days I am a crap mom.

There is not a second goes by that I am not planning the next moves around the sensory needs of my child. It is a never-ending job and my mission is to avoid meltdowns at all costs. Sometimes that means staying home all day, or spending days speaking about upcoming plans, or swapping housework for an afternoon of cuddles. I am never ever too busy for cuddles, ever. Sometimes it even means joining him under the table to eat at a party where he is overwhelmed with all the people.

I fret about going to the mall, to parties, to peoples houses, to new places, but it never stops me going. I do not want my boy growing up feeling ashamed or lonely. I want him to know it’s OK to feel how he does, and that people understand. I want to teach him healthy strategies to cope with his issues.

I want the best for him. And the best is not me denying there is an issue. The best is not me wallowing in self-pity and feeling sorry for him and his future. The best is instilling self worth into him every single day.

I need to remember that he is highly sensitive to the world around him, and that even on calm days he probably feels like a tornado has just buzzed around him.

There are some things that I cannot stand, one of those being veins. Even the word makes me cringe. If I see veins or hear someone talking about them I feel sick, and weird. My boy sees and hears veins every minute of his life, except it’s not veins it is smells, noises, textures, crowds, bright lights. The whirring of the wind, drills, and unfamiliar music are all veins to him. This keeps things in perspective.

SPD wares you out as a momma, but imagine how much more it wears out the child who has it? Momma, your tears won’t change the future, but your perception of SPD will. More patience, more cuddles, less apologies to the public will help. You do not have to justify anything to anybody, and if people question the diagnosis let them. Some disabilities are unseen. Momma knows best.

I hope that me sharing a little of our world with you has helped in some way? It is a lonely road, but I am right there cheering you on!

Keep going, tougher days are most likely ahead, but plod on through the tears, the meltdowns, the aggression, the misconceptions, the brick walls – your kid needs you!