Brother, I want to Talk to you

Jacob has a “severe expressive language disorder”. Jacob has “good communicative intent”. Jacob “related better to adults than children, with whom he finds it hard to communicate”.

Jacob has always wanted to talk, he had such a wide range of sing-songy sounds when he was a baby I was told several time “he’ll be an early talker”. Sadly that wasn’t to be, and now, at approaching five he has a very limited repertoire of words and only some speech sounds. He relies on signing to communicate and of course this requires the person he’s “talking” too to also know sign language and to know Jacob’s particular way with certain signs. It’s almost impossible for him to communicate with people who don’t know him. Not that it stops him trying, he particularly likes trying to sign “cuddle” to women (flirt). He’s currently being assessed to see if he’s suitable for AAC (Alternative and Augmentative Communication), I’m not sure if the possibility of this thrills me or frightens me.

I’ve noticed that parents with a child with speech problems seem to adopt a strangely similar way of speaking and gradually I’ve noticed that Harry has started to speak to his big brother in the same way. He very cutely affirms Jacob’s every attempt to make words with a “Yes, it’s a ‘blah blah blah’ Jacob”,  and this mirrors what I do to positively respond to both boys attempts to say words, whether it’s Harry grappling with “indecisive” or Jacob trying to say “ball”. It’s so funnily perceptive that Harry is now carrying out speech therapy techniques on his big brother. It also makes me feel a tiny bit sad.

Harry is a great talker, and yes I do mean this two ways. He never shuts up AND he is scarily mature in his speech and his understanding. This is probably as a result of all the speech therapy he’s had forced upon him, being dragged along to his first SALT appointment at barely a month old. His growing awareness of the world has meant that he’s just started to become aware that Jacob is different and he is obviously concerned and confused by it at times. He’s still so little that I struggle with knowing the best way to explain things to him.

One morning, we were in Jacob’s bedroom playing about and getting dressed when Harry said to me “It’s alright Mummy. He’s OK. Jakey’s OK, he can talk now” and this was the first time I realised that Harry knew that Jacob’s lack of speech was something that worried me, something that set Jacob apart from other boys  his age and from other big brothers. I was in awe of his powers of perception, sad that he obviously desperately wants his brother to be able to speak and so touched that he was trying to reassure me. It moved me to, very hastily disguised, tears.

When Jacob went to hospital for his MRI Harry was ecstatic and excited when we returned, but it soon became clear that this was because he thought the doctors were going to have made Jacob better and that he’d now be able to talk to him. He said to me “Jacob’s better now, the doctor made him better and now he can talk”. I gently tried to explain that this hadn’t happened. He was visibly deflated when he realised nothing had changed. He’s desperate to talk to his brother, to play imaginative games and to talk together about what’s happening. I wonder whether to try to explain that this moment might never come, will my saying out loud to Harry mean I’m accepting the possibility my eldest son might never have a conversation, might never say Mummy? What if I try to explain all this to Harry and Jacob proves me wrong (oh God, how I hope that he does)? How can I explain these things that both upset and perplex me to a two year old?

Harry tells everyone “Jakey is a great brother” before hugging him and shortly afterwards bashing him over the head with a car he doesn’t want to share; so far, so two-year-old-normal. But what of Jacob, what does he think? I imagine he’s frustrated by the fact that his understanding is so far ahead of his ability to communicate. In my head I just hear this:

Talk by Coldplay

Oh brother I can’t, I can’t get through
I’ve been trying hard to reach you, cause I don’t know what to do
Oh brother I can’t believe it’s true
I’m so scared about the future and I wanna talk to you

Messy Eating Mayhem

This post is about messy eating. Not your normal, cute messy baby-face stuff either. Proper, hardcore messy stuff. If you’re of a delicate disposition – step away now!

In amongst his collection of issues Jacob has significant oral-motor problems. This means several things: he can’t speak many words, he dribbles excessively and he is a very messy eater. It’s all caused by the fact that his brain can’t control his movements properly, all movement is affected but what happens when you want to speak or eat is extremely complicated so it is more greatly impacted upon. He has speech therapy and Talk Tool therapy to try to help this, we see slow small amounts of improvement. He also has sensory processing problems and can’t really feel what’s in his mouth so often take food in and out to check what it is or spits it out in favour of something else on the plate.

Over the last few years Jacob’s messiness a caused many a childless friend to go slightly green whilst watching him eat. I’m pretty sure it may have put a few of them off reproducing all together! It is not a sight for the faint-hearted but has at least saved me from the downfall of many mothers – the eating of the children’s left overs. I mean what degree of insanity and desperation would be required to eat this?:

Jacob spends most meal times dressed in an array of protective clothing: a fabric bib, an wipe clean apron and a crumb catcher bib; all to save multiple changes or clothes and the requirement to have Victoria Beckham’s clothes shopping budget. I, however, need a major shopping spree as practically every item of clothing I own is now stained with God knows what (that’s my excuse, and I’m sticking to it!). I’ve already abandoned patting myself on the back at my achievement of having two boys born 2 years and 3 days apart and the fortune this would save in clothes buying. Not so, many of Jacob’s clothes are lucky if the outlast him let alone make it be used by Harry.

As the weather improved it suddenly occurred to me. I don’t know why I hadn’t thought of it before. Massive amounts of cleaning up could be saved I thought, “This is the solution, no need to worry about mess if it’s outside, we’ll just eat picnics! Picnics, it’ll be, all year round!”

So we tried it, our picnic was crackers, cheese, pasta salad, cucumber, satsumas and juice at Pencarrow House. Nothing fancy and everything fairly crunchy, easy to eat for Jacob and best of all at the end of it, I could just shake the blanket and leave the mess for the birds.

The boys had a fantastic time and really enjoyed themselves, and they actually ate quite a lot when I could stop them from feeding their lunch to the peacocks hovering optimistically nearby. But my hopes of a mess free affair where dashed (sob). Jacob still managed to plaster himself and the picnic rug in food and it wouldn’t all shake off, but you know what? We had so much fun eating our picnic, watching the peacocks and chickens, and laughing at Harry rolling down slopes and clambering on fallen trees, that I didn’t really care!

Jacob enjoying making a mess outdoors

There to Here

I suppose I should start be explaining how we got for there to here. So early apologies, I promise not all my posts will be as long or as lacking in funny as this one. After all it’s been 4 and half years since our family life began so before you can understand where we are now I guess you might need to know what’s happened already.

Jacob was born 4 and a half years ago in a prolonged and complicated labour that involved syntocinon (induction/augmentation drugs), epidurals and forceps. It was a far cry from the home water birth we’d planned, my waters broke early and a number of issues meant I was in hospital for over 24 hours before they finally decided there was room for me to be induced. Anyway, eventually after around 16 hours Jacob arrived, hoiked out after getting stuck under my right hip (ouchy). He was blueish, noisy and promptly pooed on my tummy but was pronounced fine and dandy by the midwife apart from his slightly wonky toes.

Sent packing the next day from the over busy ward, we were only too glad to be out of there. Over the next few days things became more difficult. Jacob was very sleepy and it was impossible to get him to breastfeed. I called in all possible points of help, only to be reassured that it would take time to get going. But five days roll by and a check is made, “he’s lost too much weight, in you go to hospital”. He remains hard to feed and special SCBU nurses are brought in with more bottle teats than you would imagine existed to try to get him to feed. Eventually after several days, he’s pronounced “fine” and we a re-released to go home, confidence dashed, to try to maintain the 3 hourly alarm clock monitored breastfeed and top up feed regime established in hospital.

Time goes on, things settle down but we still worry. We notice that Jacob has unequal pupils in dim light, one pupil expands more than the other; he is slow to raise his head when placed on his tummy; he is slow to sit unsupported and when he can (9 months) he remains prone to suddenly losing balance and falling backwards like a felled tree; he doesn’t babble but makes plenty of noise; the list goes on and on. We become more and more concerned and yet all our pleas for help fall on deaf ears, we are “overanxious new parents” in the eyes of our health visitor; our early experiences have made me “an overly worried Mum” and I need to “relax and enjoy my baby”, even a GP when asked about my son’s constantly open mouth tells us “he just likes it like that” and “he does look  bit gormless, doesn’t he?”. Even now those last three make me almost say “grrrr” out loud. Finally when Jacob is 11 months old I by-pass our patronising health visitor and on the prompting of a friends Mum (who is also a speech therapist) I take Jacob to a GP and list all the things I’m concerned about. He listens, he too has young children, he sees what I’m saying and agrees to a referral to a community paediatrician.

The next chapter involves being told that our son is “just a late developer, not to worry, we’ll check him again but all will be fine; we’ll refer to speech and language for his feeding problems but basically don’t worry”. But I. Can’t. Stop. Something isn’t right, and I know it, call it mother’s instinct, I just KNOW it. I spend all day, every day doing developmental activities with Jacob, I read books, I pick brains of friends and family, I spend every evening researching things I can do to help him, Googling symptoms and worrying. It is exhausting.

And then, in January 2010 I find I am pregnant again, planned but happened more quickly than we thought it would! Time goes on and at 18 months Jacob is still on the late side of normal development, according to his paediatrician despite not walking. He is referred for a blood test for muscular dystrophy. Thankfully the result is negative.

We wait 15 months for our Speech Therapy feeding referral by which time we have got through the difficult period on our own and although Jacob is still behind in his tolerance of lumpy food, he is now eating and gaining weight well. We are discharged.

In October 2010 Jacob’s little brother Harry is born and the birth experience could not be more different. Harry is born with a kidney abnormality called hydronephrosis, we had learnt that he had this at his 20 week scan. He is checked after birth and it is pronounced not as bad as expected, he starts daily antibiotics. I spend the first few days on an enormous high and then the next week crying and looking for things wrong with him. I don’t find any and he soon shows me that he is developing well. Finally we see Jacob’s paediatrician again and suddenly he has global developmental delay, she agrees to refer him here, there and everywhere. It is too late we are moving. After waiting and waiting we are offered services that we can’t take up. It is massively disappointing and frustrating.

Jacob aged about 2

We move, not once but twice and in early 2011 and end up in Cornwall. A new start, a new hopeful start and straight away things begin to fall into place. I explain the situation and services appear as if by magic, speech therapists and physios visit us at home; we are referred to portage and meet a new community paediatrician who immediately refers Jacob for further investigations.

Harry not longer after moving to Cornwall

We move forward have blood tests and chromosome analysis but still no one knows what is causing Jacob’s difficulties. Harry has scans and appointments for his kidney which remains stable but not improved. I have major surgery to remove a benign tumour. Jacob goes to preschool and then to a wonderful Child Development Centre nursery. Life goes on, this is our new ordinary. Jacob is a one off, so far he doesn’t fit into a box but our life as a family goes on as we try to give our boys the best childhood, full of adventure and fun. An ordinary family life, or perhaps just one off ordinary.