Having a child with complex needs is extremely difficult. As a mother you are their carer, their nurse, their voice and their opinion.
Limited understanding what does this actually mean???
I mean we presume that 90% of the time Dylan is oblivious to the world. For instance I could put Dylan in a shopping trolley in tesco or toys r us and his reaction to the different shops would be the same. We all know the average nearly 4 year old would love to be in toys r us and be bored the minute you step foot in a supermarket. Just as long as my boy has his pom bears he’s content to go most places. Oblivious.
But what if Dylan could or does understand every word I say??? Call me deep, but just because he can’t talk doesn’t mean he doesn’t listen to what we are all saying. Like Look whose talking. Except he’s not talking just listening. Food for thought.
Dylan has been called non-verbal, as I think the doctors have got bored calling it pre-verbal as no new words have developed in over a year. Although he says very limited words, mumma for me! Gar for his sister, eeeeee for daddy, nana for Nana, um for food and bye. Last night this word had never had more truth or meaning than ever before.
Last night was Dylan’s 2nd sleep study at GOSH and we’d decided as parents, so not to disrupt our daughter, that I would take Dylan and daddy would stay home with our daughter. In all the hospital stays we’ve had (& let me tell you there’s been too many to count) daddy’s always been with us. The hospitals have always accommodated this as our little boy is so complex. But this time we’d decided I’d do it alone. 7.30pm to 8am wouldn’t be easy as this study is to watch and investigate Dylan’s sleep pattern. This is a huge task when Dylan doesn’t sleep even when dosed up to the max on sleeping drugs. But hey I love a challenge……..
Now as I’d said Dylan has very limited understanding and as he’s approaching 4 Yeats of age I try to put his understanding levels at a chronological age. It’s hard. Perhaps about 9 months. Maybe a little less. Maybe a little more. It’s hard as something’s Dylan’s just can’t get to grips with, like a bath before getting ready for bed. If I wasn’t to give him a bath (he’s so tiny he’s still in a baby bath bless him) he would be confused about why he was putting his pjs on. But if, for instance I tell him to go to sleep or to stop biting, he has no understanding at all. He’s not just being naughty he simply doesn’t understand.
So my question is…… What if he’d heard me on the phone during the day talking about how much I wasn’t looking forward to it & I didn’t want to go. I mean who wants to leave home at 6pm and drive into London for their son to be wired up to machines through the night??? Not top of my list of things to do before I turn 40 but I know these things are a must in helping my baby.
The sleep studies are cardio-respiratory (measuring overnight oxygen and carbon dioxide levels, plus chest movements and airflow at the nose). All of which need little stickers to be attached to his little body which I know he understands as he had a phobia of things being stuck to him and pulls them straight off. (We had this last week when they tried to give Dylan a prolonged ECG – the nurses gave up after at least 15 attempts and lots of wasted stickers!!)
Back to my question…… I know try to envisage inside my sons head….. It’s echoey in here. I can here lots of what’s going on in the world outside some sounds a little strange but mostly I can hear everything normally just loud and echoey. So now I’m Dylan, and I can hear mummy telling people where we are going this evening. Hold on, we don’t go out at night. Not without daddy and gar. I really don’t want to be pulled about tonight. Wait!! I can’t exactly tell mummy I don’t want to go, I know she definitely doesn’t want to go too. We need a plan to get out of it…….
So at 5.45pm I pack the car up. I don’t travel lightly!! Just before we left my husband said he could see the fear in Dylan’s face. He definitely did not want to go. But off we set anyway…… After 10 minutes or so Dylan started grizzling. I thought he was hungry so passed him some food. He hadn’t eaten all day. Was he off colour or did he know?? Driving down the motorway Dylan’s grizzle turned to a cry. He didn’t want food. So I passed him his juice. Didn’t want that either. Now heading through East London his cry was a scream. This panicked me as I’m not keen on driving into London especially not on a Friday night. And so this went on.
We arrived at GREAT ORMOND STREET HOSPITAL (GOSH) I parked right outside the door. By this point you’d think he’d have worn himself out from screaming. Oh no not my boy. As we walk through the doors to the hospital through his screams he’s saying bye-bye bye-bye. This child didn’t want to be here. He knew where he was and he knew why we were here. I just know it.
We arrive at the sleep unit in southward building on 5th floor. A lovely male nurse greets us. I explain I think Dylan’s under the weather…… He takes us through to the room to which Dylan continues to scream even louder. Full on proper tears are falling from his eyes. The doctor arrives to examine him but Dylan wouldn’t let her. She leave us in order for Dylan to calm down. No such luck. Screaming was an understatement. He was dripping he was getting in such a state.
After a while we were asked to move rooms as he was disturbing the child in the room next door. At this point I felt like screaming myself. The doctor came back. I said he must be in pain. He was due his pain relief anyway so I gave him his evening codeine and paracetamol suppository. But to no avail. This boy was not giving in.
Another doctor came in to examine him. His heart rate was particularly high his temperature was up but his body felt cold. We were all sure he was brewing an infection of sort. It was now approaching 10pm this had been one of the longest evenings of my life. After much consideration and the doctors telling me that even if they conducted the sleep study it wouldn’t be a true reading with his heart rate so increased and that we should go home.
Half of me was jumping for joy the other half of me felt I’d failed him. Anyway within minutes the car was packed up and we were just about to embark for home when Dylan, who had now stopped screaming, laughed. A wicked haha told you so, I got my own way, didn’t want to be there laugh.
We arrived home after 11pm and the look on his face when he saw his daddy was a picture. Eyes all puffy from crying and cheeks still rosy he smiled and laughed and knew he was home and safe. He played with daddy and even had something to eat. He was up till 3am.
So, understanding or no understand that is the question???? Dylan did, I’m sure, know what was in store for him and because he is practically non verbal had to take extreme measures to get his point across. He did that indeed. I feel very proud that he was able to do this but it saddens me that it takes such extreme measures to convey. But still I’m very proud of the independence my son has shown.
Today Dylan’s not been 100%, very pale and blue around the lips (requiring some oxygen) a couple of spiking temp. But is this the something brewing of the aftermath of last night? He’s also not eaten all that much but has played happily with his favorite things. Balloons.;( but what Dylan doesn’t know is that we have to do it all again and properly this time)