Keeping it real – By a frazzled mom

Yesterday was not a good day. I hate beginning a post like that, but being the honest mom that I am I have to. Today I felt that I have failed at being my little girl’s most fierce protector, and it sucked.

30 (2)

If you read my last post, you will know that A1 was “diagnosed” with Sensory Processing Disorder (SPD) little more than a year ago. I say “diagnosed” because SPD is not a recognised medical disorder, yet (it is not listed in the most-known medical journals such as ICD-10 or the DSM-5), and also since A1 is still in her forming years it is very difficult to definitely pin-point something so wide and evasive such as SPD. Since then, we have incorporated, on and off if I am brutally honest, a sensory diet tailored to her specific needs. But because her needs change rather fast, and it seems as if she is doing fine after a while, we stop using all the techniques and activities, and then “surprisingly” she regresses. I can just see you shaking your head…

Our previous visit was more or less 4 months ago, about 3 months after the birth of her sister, and things were going well. Until about a week ago. A1 has 3 tell-tale signs that she is not coping: firstly, she will stop eating. Then, she will start having trouble sleeping, waking up at 3h in the morning and refusing to go back to sleep. And then she will start biting when she is excited. Never malicious, always as part of a game-gone-too-far. All of these things popped up, almost at the same time. If I have to guess the reason, I would say the change with having me home more often and Dad being away on Saturdays at his MBA classes might be to blame. She has never tolerated change well, not even positive change. So today, we visited our new Occupational Therapist. The brilliant one we worked with previously moved to another province, and we were referred to this new OT.

We arrived early for our appointment. A1 is not good with changes, and so I wanted to be there early so that she can meet the new OT with no pressure of starting the session. She also likes people when she wants to be social, another reason I wanted to be early – she can get the socialising out of the way before the session starts. So we get there, we [read “they”] meet and it seems as if A1 is happy with the new “Tannie”. Big sigh of relief. Now we can get started with the session. All goes well – exceptionally well. A1 goes in the swing. She allows the weighted toys to be put on her. She crawls through the sensory tunnel, again and again. She sits on the little car and allow herself to be pushed down a ramp. Later on she even goes down the ramp on her belly. I am so happy, already picturing how OT is going to tell me A1 is doing so well we can stop worrying and allow her to just BE. Everything is going to be ok. All the while we talk – about transitions, behaviour, likes and dislikes, sleep patterns, eating habits, you name it. And A1 plays, now swinging herself on the swing, kicking her legs and falling about. Having lots of fun.

But no, nothing is ever that easy. Instead, she tells me A1’s system is really out of balance. She goes from seeking sensory input to trying to block it all out from one moment to the next. So one minute she will be hypo-sensitive and the next hyper-sensitive. She is struggling to regulate, and it is manifesting in negative behaviour such as biting, hitting, not sleeping, refusing to eat, and hyperactivity. And then the shocker – if we don’t sort this out now, she will most likely not be tested as school-ready when she is 4. And most probably be labelled a bully by her peers. Definitely not what I want for my blue-eyed dreamer. My beautiful free-spirited girl with the enormous heart and infectious smile. And sparkly eyes. Mostly because of mischief, but sparkly none the less. So back to weekly therapy sessions we go. At first, the goal will be to saturate her system, i.e. give her enough sensory input to make her feel grounded and happy. This will take some time, and will also demand commitment from our part. We will have to provide the same sensory inputs at home to ensure that her sensory cup gets filled every single day. Once that is sorted out, OT will start teaching her skills so that she can manage to regulate her inputs and outputs herself, with the necessary coping techniques that she can use to calm herself down when an inevitable over-stimulation situation rears its ugly head.

This hit me hard. I was almost starting to feel as if I was making things up, that our situation can’t be that bad. With this news, off course the well-known Mom-guilt popped up – did I do something wrong? Do I treat her wrong? Maybe it is the way I discipline her? Or something I did when I was pregnant with her? Off course it had to be my fault, at her age she is very much still an extension of me! And if I cannot protect her, keep her healthy and safe and happy, who will?!? It was everything I could do to not burst out in tears right there in the therapy room.

What made this worse is the realisation that although I can see what my child needs, other people in her life may not be as supportive. Not only because they do not have all the facts, but also because they feel that this “diagnoses” somehow takes something away from her. In some way it makes her handicapped. It doesn’t. It is not a disability. Yes it can interfere with her life, if not managed. And yes people who have it severely do suffer and struggle to lead a normal life. But if you learn the right techniques and possess the necessary skills there is no reason why it should impact your life negatively. Unfortunately, at her age, we are the only way that she can learn these things. And if the whole village doesn’t work together, one person can erase all the progress the rest of us has worked so hard to make. That makes step one extremely difficult: get everyone on-board. If I cannot manage to do that, I have definitely failed at being her protector.

Our journey with SPD has thus taken another turn. Hopefully we are now on the highway.

Honest Mom Love