Playing Catch Up

This week I heard words that, to be honest, I’d given up on waiting to hear long ago. Three little words that astounded me.

“Might catch up”

When Jacob stopped receiving play development therapy from portage we were referred to a local outreach service run by a charity called BIBIC, a charity that helps children with brain related conditions. We’ve just had our second visit from our lovely therapist, the previous one being around 6 months ago; session 1 involved lots of questions for me and a number of play based assessment activities for Jacob, in session 2 the therapist ran through her observations and findings and suggested a number of activities we can do daily with Jacob to help his sensory processing problems and move his development forward.

During the feedback the therapist showed me a list of all the things Jacob couldn’t do at the last visit that he could do now and showed me that Jacob had moved forward almost 4 months of development in the last 6 months! His fine and gross motor skills previously measured at around 15 months are now at 18/19 months level. Much as I know that he is progressing, I found proof of this large leap forward  incredible. It was then that the therapist said the astounding words: “if he carries on like this, as the developmental milestones become smaller, he will gradually catch up”. I said “Do What? Sorry? He might catch up?” She smiled, nodded and stressed “He may do”. I know it’s a big might, and I am mostly reconciled to that that he is unlikely to ever really talk , but the fact that he is showing such progress in his motor skills is just so exciting regardless of whether this level of  progress will continue or not.

This news has really motivated me to continue with the hard work. For the first two years of Jacob’s life I felt like I was knocking on a door only to see it open a tiny bit and then slam back in my face. It was relentlessly disheartening and so many times I felt like giving up. I felt as if all the work we put in was achieving nothing. It’s amazing to watch children without disabilities just do stuff, they just pick it up and off they go. Everything with Jacob has to be taught, over-learnt and taught again, hand over hand. It is unrelenting repetition and sometimes it feels if you are no further forward after months of work. Even with proof of fantastic progress, I would be lying if  said I didn’t often feel resentful of the fact that so much of our life is dominated by carrying out Jacob’s therapy; but with news like this? Well, I just need a nightly big glug of wine and a vow to try again tomorrow. He’s trying so hard, so I can’t give up

I am so grateful that we’ve had this chance to work with a a charity that has let us see Jacob is moving forwards and that he is doing well in his own way. So it saddened me greatly to receive news that the BIBIC outreach programme is finishing due to lack of funding. This will be Jacob’s second and last visit and programme. We’re not giving up though, we’re off to find a new and exciting way to maximise his progress as he seems to be on a roll at the moment. More news of that anon……!

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

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

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.