Sit. Walk. Stand.

I have always been a homebody. I like being at home with my things around me. I enjoy making house, choosing decor and having a quiet space. Mr Pearlie J is much more gregarious and could live life as one big party. This is the man who watched a programme before we had children about a family of 13, looked at me and said – “that would be excellent wouldn’t it”?! (We’re still married) I do extrovert in public but only if I get to come home and recover peacefully in my own surroundings, preferably with a book and a blanket (I’m so rock and roll)

Now gentle reader, my home which had always been a place of refuge, became open house for a variety of professional visitors, who could turn up apparently at will.

The very first was an utterly phenomenal Physiotherapist who was also a ‘school gates’ mum. In retrospect she set the bar really high and made me believe that professionals were there with practical help, to make a supportive plan for me,  Mr Pearlie J & Pearl. I,  remember, had been one of these professionals. I really believed in the therapy services and the “Multidisciplinary Team”. For the uninitiated this is a group of professionals from different disciplines, including medics, therapists and social services. This team works together, sharing information and including the patient/carer as an equal in problem solving. I’d worked in hospitals, this is how we rolled. It was effective and rewarding. Unfortunately it was also something I was seldom to meet now I was officially on “the other side”.

Initially this Physiotherapist phoned me to check it was alright to come, as we knew each other. It really was. She was lovely with Pearl and spoke to me as an equal. This didn’t strike me as strange, but became increasingly rare as we moved through the system. Pearl was thoroughly assessed and Hallelujah! A reason was given for her inability to roll over. (Hyperflexion in her hip joints) Perfect. There was a problem, it was purely physical, and it explained the knock on effect to the rest of her development. We could put it right and she would catch up!

The awesome Physiotherapist showed Pearl how to roll over. (The method she had been using of throwing her head forward and shouting crossly had proved ineffective). She showed me how to facilitate rolling. In three days Pearl could roll over! This was brilliant, I was amazing at parenting and at this rate she’d be up to speed in a month. Hurrah!

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We started working on crawling. Mr PJ and I spent days on the floor at opposite ends of the carpet.  Pearl was strung up with a towel around her middle, letting her take some weight on her hands and knees., while her Dad did amusing and encouraging things to remind her that locomotion was a good thing.

We started to breathe more easily. Obviously there was a problem, but it was responding to therapy. We were proactive parents, with help we could sort it out. Pearl was taking a different route to the same place as her peers and siblings. One day we would look back and laugh, oh how we’d laugh, at how concerned we had been.

I should probably introduce you at this stage to The Godmother. I met her when I was training to be a SALT. She was too. She was stylish, attractive clever and funny and became one of my very best friends (Still is). The Godmother was outgoing, opinionated, political and independent. She became the eldest’s Godmother. Oh and she also had cerebral palsy. This impinged on her walking and movement but she lived a normal life with very little effort (how I’ve had to apologise for this lack of insight on my part since Pearl arrived!). Anyway as far as we were concerned she was the model of how Pearl would probably end up. Physical problems, fine cognitively, and able to function without much help. This was what we wanted. Enough disability to be character building without being too distressing – you know the kind of thing. For all these reasons, Mr PJ and I decided that this is what would happen with Pearl. This is what her future would look like.

The physiotherapy was all encompassing, but it was working-I had a project and was back in control. By the power of therapy I expected to have Pearl standing and walking by her Paediatrician review. We’d be signed off and congratulated for being such awesome parents.

I couldn’t wait.

Leaves on the line, and other reasons for delay.

In which I become obsessed with developmental scales and consider running off to sea to become a sailor

First you bring a lovely little baby home, or in from the playroom if you are a fantastically high achieving middle class stereotype.

You breastfeed the baby, because you can and you have before (At this point I should admit that babyhood is one of my favourite bits of parenting.The dreamy, sleepy, milky days where you can lounge on the sofa in between applying cold cabbage leaves to cracked nipples-I really don’t mind.The singing, smelling cuddly bits especially when you know this is the last one. Bit fab actually)

This child fits in really well with the two others, has to, they are both at school. You have a routine.

This baby sleeps.  A lot. This is good. You have two busy children and you like 10 hours sleep a night (yes truly). When she is not sleeping she does baby things. Looks at everything, waves her arms and makes noises. She passes her baby tests at 6 weeks old and her hearing tests. Also at 6 weeks when she realises you are knackered and her survival depends on it she learns to smile. The child is clearly a genius just like the other two.

But… Somewhere deep within your mother’s heart there is a stirring of disquiet. She does sleep an awful lot. Her baby friends born at the same time, seem to hold their heads up more strongly. Gloriously these peers are at your church and all born within a month of each other, so you can check their progress every week and be ABSOLUTELY delighted for them. Her feet (which I’ve always thought were the best bit of the baby, small soft, unfootlike, yet full of potential) are permanently cold and very dark. You are referred to a Paediatrician, he checks her,  she’s fine. She has poor circulation in her feet (so do you) End of story, no worries, no further contact necessary. Warm socks, leather booties job done.

So now she’s 6 months old, fitting in nicely, smiley, biddable and happy. And adored.It is possible that no baby was ever doted on as much as this one. Her two older siblings bounce her, sing to her and love her, and she loves them right back. The baby friends are rolling, sitting up and starting to babble. This baby here, this precious Pearl is happy, vocal but surprisingly floppy. She is progressing along a developmental line, but slowly. Either that or the baby friends are all superhuman. They probably are. Her elder brother and sister were ridiculously precocious, so it seems likely this is what normal development looks like.

At this point you’re confident, as she’s clearly perfect, but concerned enough to dig out an old textbook with a month by month developmental scale on it. Actually it’s OK. She is following a line, she’s lost a couple of months in all areas except speech.

Oh. But her babbling is a bit odd in the mornings. No consonants to speak of (do you see what I did there?). Nobody else in the family is a trained Speech And Language Therapist so they don’t notice, and you haven’t worked with children for years so might be wrong.

This is the stage when an older lady of your acquaintance utters the immortal phrase “You worry more about that child than any of the others” Just you wait Mum, you ain’t seen nothing yet.

So you plod along happily, bit bothered, watching, waiting and soon it’s the glorious day of the 6 month check.

Ideally a 6 month check won’t be delayed ’til 9 months because of an admin error, and ideally it isn’t scheduled to coincide with the nap time of the said 9 month year old.

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From the moment I took off Pearl’s coat, and she sat with her chin on her chest and her back rounded, I could see the Health Visitor was worried.In a spirit of being no bother at all, I told her everything was fine. Pearl was tired (she was) she was slow (also true) but that was all. Babies all develop at different rates don’t you know. By the end of the visit I was cross, upset and booked into see the Paediatrician the following day.

Despite my concerns I did think that it was all an over reaction. Nobody in our family or friend group were concerned, it was only me, and I think we’ve already established I was making a fuss. Anyway as an assertive, knowledgeable woman I took Pearl to see the Paediatrician early in the morning when she was at her best and persuaded him it was a fuss about nothing. He agreed and arranged to review us in 3 months. We were referred to Physio for further assessment and to watch her progress.

And this dear reader, was the moment when all the joy began to be slowly leeched out of being with my beloved Pearl to be replaced by assessments, monitoring and a growing feeling of losing control. I had the first desire to scoop her up and run away with her somewhere safe and secret away from prying eyes. this feeling was to become increasingly familiar over the next few months.

The Wrong Kind of Snow.

An introduction to the trials and tribulations of our family life, additional needs, and unnecessary film and poetry references.

Ten years ago, I was a parent of two children, both bright witty and engaging (obviously). A boy and a girl.

I was also a Professional, a Speech and Language Therapist, I liked Science, investigation and finding answers.

Oh I was a wife as well (still am in fact, apologies Mr Pearlie J)

A control freak,  sometime depressive, a Church goer and Christian. A book mad, self deprecating, film loving stereotype. Not very house proud (no change there).

Living in a house of loud opinionated people suited me pretty well, but one amongst us felt the family just wasn’t finished, and as we are both the youngest of three we set to, to complete it.

I’ve worked with various types of acquired and developmental disorders in my job. I never automatically assumed that our children would be perfect, but having produced two who seemed just fine, was fairly laid back about this one.

Besides special children did not happen to people like me. There were none in my circle of friends. When I did see parents of these children they seemed patient, able to cope, well organised. They’d probably chosen, or been chosen, for this path in some mystical way. Also there weren’t that many children like that out there.

Naivety has been an abiding part of my life,  a constant course of hilarity amongst my nearest and dearest. I am in fact the person who believed the word gullible had been taken out of the dictionary. I had given birth to a Pearl of a girl at home, with no pain relief (look on my deeds you mighty and despair). Perfect. I had well and truly nailed this parenting lark.

At this point I will introduce you to Pearl. In a family of leaders she is noisy, self assured and communicative. Oh and nonverbal. Did I mention nonverbal? She communicates by pointing, shouting “yeah” or shaking her head and by signing biscuit. Or cake. She shamelessly uses charm, persistence and leadership skills (not bullying obviously) to bend the world around her to her will. Pearl is 9, she dribbles profusely, has learning difficulties. is still in nappies, can’t dress or care for herself, and although she can walk has significant mobility issues and uses a wheelchair or K walker. She has changed everything.

Oh and somebody forgot to tell her she was disabled.

If you have a mind to,  stick around and I’ll tell you what we’ve learnt , how to succeed in parenting (hollow laugh) and how to remove chocolate from a wide variety of surfaces.

You’ll laugh. You’ll cry. You’ll hurl .No? Just me then.

Incidentally we have no diagnosis. Just the wrong kind of snow changing our travel plans.