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At times you begin to lose faith in yourself

AS we sent off forms for Bodhi to be assessed, to rule anything out or figure out what was going on, we had a long wait and battle on our hands, in more ways than one.

We faced the toughest six months of our lives in 2016 — Bodhi barely slept from June of that year until the end of December.

We feel this was due to the anaesthetic given when Bodhi had a brain stem cell test for his hearing and grommets inserted — as there can be side effects to an anaesthetic.

It was the hospital’s policy for a parent to be in theatre and put the mask over their own child’s face to put them to sleep, while they thrash out hysterical, not understanding what mom or dad was doing.

That process alone would be very hard on a verbal child to comprehend, not to mind a child who depends on you completely to communicate his fears and issues. We felt we had let him down massively.

I believe it was also an error on the hospital’s part to not have one of us there in the recovery room before he woke up. If you have a non-verbal child then he can’t ask for his mom or dad, he cannot say he is scared, that he feels sick, that they are frightening him.

When he woke up I had to go down two flights of stairs and be brought in to see him. At that stage my two-year-old child was screaming hysterical in fear, eyes closed, gripping onto the rails of the bed with white knuckles, while six members of staff were all gathered around him with masks on their faces.

It took me 15 minutes to get him to un-grip the bed rail and open his eyes to realise I was there with him, as he couldn’t hear my voice over the sound of his own screams.

For the next six months my child was afraid to go to sleep. He would doze for twenty minutes at a time and then wake screaming, he would not let himself fall into a deep sleep.

This continued each and every night until about 7am the next morning when he would pass out with exhaustion, at which time it was due to wake my older girls to get up for school.

I was then juggling a newborn, the needs of my three older girls, a husband who was working nights, and a two year old who screamed every half an hour and would take an hour or so to get back into the bed.

His screams would set the newborn off or vice versa, I would get to bed myself when my husband got in from work at 8am, he would thankfully take over and let me sleep until lunch and then I would get up and continue the schedule for the day with the kids and let him sleep until he went to work, and we would start this process all over again.

We tried everything, salt lamps, creams, over the counter meds, white noise, DVD on, DVD off, lights on, lights off, sensory lights, baths, massage and even CBD oil.

We contacted doctors, consultants and Bodhi’s paediatrician — waiting for an appointment can seem like years when you are living day to day on zero sleep.

We were prescribed melatonin and it didn’t work, I am ashamed to say the child was even prescribed Chloral Hydrate at one point, he took it once and he slept for two hours. I will never forget his little face when the taste hit his mouth and him retching and us at the brink of pure exhaustion, needing just one full night’s sleep to recharge, trying to make sure it stayed down so he would sleep.

For those of you not aware, Chloral Hydrate is what they give you in the hospital to knock you out. As a matter of interest I took it myself to see what he had to go through as he couldn’t tell me, the burn at the back of my throat, the hangover feeling the following day, the small calpol bottle size costing us €98. I felt so guilty, it was the first and last time he took it.

By the end of 2016, I had hit my wall, we were exhausted and at our wits’ end, I had four other children who also needed me and I was conscious of them resenting their brother, who I am sure, to them, just seemed to constantly scream and take all their mother’s time and attention.

You begin to lose faith in yourself, you are spread thin, you isolate yourself from people, you don’t want to go anywhere for fear he will kick off, you don’t want people to call in case he is screaming, you are the only person he trusts yet you can’t even help him.

I was afraid to bring him out in case he would have a meltdown and I wouldn’t know what to do, he would pick up on my anxiety and home is where he was most comfortable and knew what was happening and had his structure, so that is what we did. We stayed home.

If I left the room or was out of sight he was hysterical with worry and anxious, which led to vomiting if I didn’t appear on cue. He relied on me explicitly and I was drowning, I was going to the toilet with him on my lap, cooking with him laying at my feet, cut off from friends, any social life, I wouldn’t even go to the shop, I was angry, upset and I couldn’t see the wood for the trees.

He had such bad anxiety, he would bite the inside of his lip until it bled, bite his nails, and when he was very bad, his toenails.

We have a large family of 16 grandchildren on both sides so there are always birthday parties, he hated large crowds so we didn’t take him. He didn’t have any parties himself, he didn’t have any interest in toys, it was a very sad period, trying to come to terms with wondering if this is the way it would always be.

He had an aversion to strange men, so I feared anyone delivering anything to the house, a repair man, even the postman knocking and me having to speak to them, would ruin our whole day as it would set him off and the screaming would commence.

If someone called unannounced, even family, and he wasn’t prepared it would throw him off for the rest of the day.

A child with autism needs to know what is happening next, even those closest to you don’t understand that any one straying from structure and it not only upsets him but it has a knock on effect for the whole household long after they are gone home.

It took us a long time to read the cues but I know his limits now and I have to be adamant about rules or all hell breaks loose in my house that I am left to deal with.

Funnily enough, he loved women, especially blondes, it was a running joke, we would do an exhale of relief if anyone we had to meet in the medical profession was a blonde female. We then knew that appointment would go alright. At the time, if he liked you he would greet you by pressing his forehead to yours, not with blondes though, he went straight in for a kiss.

We reached out to SHINE advocacy service for help in November 2016, as the Health Service Executive told us we had a minimum wait of 18 months before he would even be called to be seen. In the meantime we were to just put up and shut up. This was like a red rag to a bull for me and something under no circumstances that I would be doing.

See next week's Women on Wednesday for more.

Lenore writes a blog on Facebook, called ‘Out in the Sticks With Six’.