Tag Archives: respite worker

Lucky Number Six

12 Jul

Being a parent is hard. You have to deal with conflicts, challenges, lack of sleep, lack of privacy, loss of self-identity, turmoil, guilt, worry, heartache, tears, and the reality of never being able to eat a full meal without interruption. And that’s just with a regular kid.

When you add autism into the mix, you also add the sensory challenges, meltdowns, communication issues, various other autism-related challenges, guilt piled on you by the media and other parents because you chose to vaccinate your child, and uncomfortable stares and rude comments from strangers in grocery stores.

All parents need a break sometimes. Especially parents of children with autism or other special needs. We love our kids, and recognize that in order to be better for them, we need to take care of ourselves.

This is why God created respite workers, and for some lucky parents, the funding to pay for them.

Our respite worker adventures are in their fourth year. In that time, we have gone through five workers, and we have just started on our sixth.

Our first worker was fantastic. We found her at the daycare George went to. She was his favourite teacher there. And so, when she left the daycare and asked us if we would like her to do respite work with George, we jumped at it. Both of the kids loved her, and George eagerly anticipated his times with her. After two years with us, she called me with the news that she had suffered a relapse of breast cancer and needed to take time out to focus on her health. We were sad to see her go, but we completely understood.

After a search of about three months, we found a new respite worker. George took to her right away. She was organized but creative, firm but kindly. She engaged George in a very positive way. She was a lovely, lovely person, and we could tell that she had a gift for working with special needs children. Unfortunately for us, one of the therapy centres recognized the same gift in her, and hired her full-time as an instructor/therapist. She gave us plenty of notice, so that we could find a replacement before she left.

Respite worker #3 was easy enough to find. On paper she looked great. Lots of experience with special needs kids, working towards an early childhood education qualification, and sister to someone with autism. We thought this woman had it all, right down to the personal experience with her own brother.

She turned out to be spiteful and vindictive. She lasted for precisely two sessions, one of which had been a handover session with Respite worker #2.

On to Respite worker #4. We found her through an ad we placed in a local newspaper. She came for an interview, and seemed to interact well with George. We liked her, we hired her, and she agreed to start the following week. Unbeknownst to us, though, she had been actively seeking full-time employment and got offered a job a couple of days before she was due to start with us.

At this point, I was ready to throw up my hands in despair. Good respite workers – the ones who are good at what they do, are nice people, and stick around for longer than it takes to make a cup of coffee – are like gold dust.

I placed another ad, and got a number of responses. We settled on a very nice, down-to-earth lady. When she came for the interview, she produced a binder containing her resume, police clearance, references, and various CPR and First Aid certificates. The details that impressed me on her resume were that she had been with one of her respite families for about ten years, and the other one for even longer. This woman had a history of staying with her families, and she even spoke about the benefits of building a long-term relationship with the child. We liked her, we hired her. She started the following week.

And then, as fate would have it, a close family member of hers was seriously injured in an accident, and another close family member had a heart attack and needed bypass surgery. Our new respite worker had to temporarily suspend work so she could take care of her family. After a break of a month or so, she came back, but that only lasted for two weeks. One of her family members relapsed, and she had to take time off again. She stopped replying to my texts and returning calls, and as nice and all as she was, I had to make the decision to cut her loose.

And now, as of yesterday, we have started with Respite worker #6. I am hesitant to make any sweeping statements at this point, but she seems to have been dropped into our laps by the smiling gods of fate. She has been a student volunteer in George’s classroom for the last two years. She knows him, and she seems to like him. He seems to like her.

I am really hoping she will be our Lucky Number Six.

A Life Hanging In The Balance

20 Apr

About three weeks ago, we hired a new respite worker for George. It has been a long, frustrating process – anyone who has ever had a need for a respite worker will know that the good ones are like gold dust. They are very hard to find, and even harder to keep.

When our new worker, F, walked into our home for an interview, I liked her immediately. Perhaps more tellingly, both of the kids took to her immediately. In a very short time, she has wormed her way into the hearts of the entire family.

Sadly, as she becomes an important part of our family, a crisis is happening in her own. A couple of weeks ago, the car that her sister and sister-in-law were traveling in was hit by a car making an illegal turn. The driver of the other car drove away at speed, but not before a witness snapped a picture of him with a cell phone. Police have since found the vehicle and identified the driver, who is currently hiding out in the United States.

F’s sister is OK. She has a broken leg and some nasty bruising. The sister-in-law, on the other hand, is in very serious condition. She was pregnant at the time of the collision, and the baby did not survive. And now her own body is gradually shutting down. She is not responding to medication, her lungs are filling up with fluids, and doctors are saying that there is nothing they can do.

She has been moved to palliative care. There have been conversations about DNR’s.

My heart goes out to F, who is very close to her sister-in-law. I think of the anguish she is going through, and the pain of the man who is likely going to be widowed very soon. I think of a two-year-old child whose mother is dying. And it just breaks my heart.

Anyone reading this – please send out positive thoughts of strength and healing to a family who really needs it. The doctors say that a miracle is still possible. Let’s try to bend the will of the Universe to make that miracle happen.

To sleep, perchance to dream

16 Apr

On Monday night, George had one of his stay-awake-for-half-the-night nights. It happens once every two weeks or so.  He goes to sleep easily enough, aided by the melatonin we give him with his bedtime milk, but then he wakes up in the early hours of the morning – anywhere from midnight to 3:00 a.m. – and he stays awake for about three hours.  He is not upset, he does not cry.  Apart from occasional bursts of laughter (which, to be honest, are a bit creepy at four in the morning when nothing is funny), he is actually very quiet.  He is not still, though.  He gets up and wanders around, or he climbs into bed beside me and starts playing with my hair, or he sits on the end of my bed rocking back and forth.  It is a level of activity that leaves me in an uncomfortable state of consciousness: he is not active enough to force me to just get up and do something useful, and he is not still enough for me to be able to drift back to sleep.  So I lie there in bed in a state of exhaustion, trying to settle him and get him to go back to sleep.  Experience has taught me that I cannot really force this.  When he has these nights, the best thing for me to do is just lie as still as I can, ignore George as much as possible, and wait for him to go back to sleep.

As long as he sticks to his regular schedule – about once every two weeks – I can handle it.  I always feel like the undead the following day, but at least I know that I’ll be getting relatively normal sleep for the next two weeks.  This is just part of his autism that I’ve kind of learned to live with.  Autism and sleep disorders frequently go together, and I reckon that once every two weeks isn’t too bad considering what some parents have to go through.

This time he did not stick to the schedule.  Instead of waiting for two weeks, we were treated to another one of those nights after a mere two days.  On Wednesday afternoon Catherine came.  Catherine is the new respite worker, and this was the first time she was working with George.  For a first encounter, they did OK with each other, but George was definitely stressed out by this change to his day.  After Catherine left, he was prowling around with a mood that could have gone either way at a moment’s notice.  At bedtime he was narky, unsettled, and uncooperative.  We were patient: knowing that changes in his daily routine do tend to reflect on his sleeping patterns, we had kind of expected this.  George eventually settled down in my bed and went to sleep.

At about 1:00 a.m. he woke up in a mood.  He was crying, he was angry, and he was noisily rooting around in his box of alphabetic fridge magnets announcing to the world that he wanted “small letter a”.  Much to his chagrin, we removed his access to the box of fridge magnets, and with some soothing, he settled down with his dad.  To give him more space, I abandoned my spot on the bed and went to sleep on the sofa-bed.  Predictably, George followed.  When he wakes up in the middle of the night, he goes into full-on “Mommy mode”.

For three hours, he was playing with my hair, sitting up on the bed, lying down again, demanding that I scratch his back, telling me he wanted popcorn, getting up to wander around and look for his box.  I was mostly ignoring him, occasionally telling him to lie down, moving his hand away from my hair (the way he constantly plays with my hair sometimes drives me crazy, especially in the middle of the night).  I was watching the clock, and at about 3:30 a.m. I ruefully accepted that I would not be going for my planned early morning run.

George eventually fell asleep at about 4:00, and I fell asleep shortly thereafter.  I woke up just over two hours later, almost weeping with exhaustion.  Somehow I got through the day, helped no doubt by the knowledge that I would be leaving early due to a medical appointment. Throughout the day I was filled with anxiety: Catherine was coming again.  Were we in for another tumultuous night?

George and catherine had a successful session.  When Catherine left George gave her a hug; he was happy and smiling for the rest of the day.  He was contentedly playing with his box of magnets, which had been restored to him.  Although I felt pitifully tired, I went for a run (it was a good one too – I well and truly flounced my target pace).  At bedtime, George was relaxed and cooperative, and he went to sleep right away.  There was a brief moment of anxiety in the middle of the night when we heard him digging through his box.  Once more, I removed the box – this time, George went back to sleep immediately, and I spent the rest of the night in glorious oblivion.

Having had two virtually sleepless nights over the course of three days, I still feel exhausted.  Sometimes a single good night of sleep is not sufficient to wipe out the sleep deficit.  I am looking forward to another night of good slumber and a restful weekend.