This might end up being the longest post that I have written. I am largely writing it as a way of pulling together all of the things that have helped and therefore to remind me what is working. I hope as a side effect of that you find something useful.
I am going to start with 2 quotes that mean an awful lot to me.
Just in case you need some music while you read. It’s a long post.
My journey has been the loss of my Dad, Mam and... read more
This might end up being the longest post that I have written. I am largely writing it as a way of pulling together all of the things that have helped and therefore to remind me what is working. I hope as a side effect of that you find something useful.
I am going to start with 2 quotes that mean an awful lot to me.
Just in case you need some music while you read. It’s a long post.
My journey has been the loss of my Dad, Mam and the love of my life Bev in a short space of time. Tam lost his Granddad, Grandma and Mammy. That’s a lot to take.
Three years since Bev died. Grief, sorrow and lots of crying. Tam and myself have been to hell and back but we have also found a way forward. It is constantly on my mind about how Bev would feel about our journey and I also remind Tam that we have to make Mammy proud.
Never underestimate a child understanding
Recently I have been talking to a Clinical Psychologist about all aspects of Tams behaviour. One of things she took me through was looking at Tams behaviour not in terms of meltdowns and tantrums but more about how fizzy he is. Now just think of a grocery delivery you have just had and you have bottles of fizzy pop in the delivery. You would not think about opening those bottles without letting them settle would you. Well, apply that to your child autistic or not. If they are showing signs of being a little fizzy then great, thats ok. Kids get fizzy, part of being a kid. Then over time the fizziness get a bit more until it blows the top off the bottle. Well the language is much better and more positive, more manageable then well “Tam was OK, a bit rattled, then he blew, full bloody meltdown, absolute breakdown. Took hours for him to come down”.
Never underestimate the power of language in helping deal with difficult solutions.
Work on coaching yourself and your child on the feelings.
Now Tam is largely non verbal, but this has not stopped me doing this. My fizziness drops while I am doing this as well as Tams. This has helped both of us so much and it was not even on my radar. (thank you Doc Lauren, you are a star)
This is something that is very difficult to do. At times I find it impossible because there are so many things to do. It is so easy to be hard on yourself. As a single parent I am one set of hands, I can only do so much. That does not stop me from criticising myself.
Well, a piece of advice from me, the hopeless on sitting in the corner, don’t criticise yourself. Leave that to other people. They have time on their hands and nothing better to do. Accept the fact you are too busy to listen to criticism from yourself. You will always be your own worst critic and guess what, your inner critic is wrong and needs to shut up and help out.
Tell the critic inside you to shut up and help out.
Sometimes you will have to raise the white flag and submit to doing nothing on a day. Just hope its one of the days your child is in respite or school (wishful bloody thinking). On those days accept it. Don’t feel guilty about having a day doing nothing. It’s the calm before the storm sometimes. Listen to you head and body and embrace it. A day doing nothing will be a much more useful thing if you embrace it rather than fight it and feel guilty. Leave guilt to people who have something to be guilty about (like politicians).
Be good to yourself and sod the world. You deserve it (every now and again)
This one is just as applicable in life as it is in dealing with grief or looking after a special needs child. I used to keep a journal before Bev died and she used to laugh at some of the stuff I wrote, sometimes she would just look at me and say “Really?”. I never hid what I wrote.
Since she died I have kept one and largely it has included stuff like
So pretty wide ranging stuff. Well being able to look back at those daily notes helps in all sorts of situations. For example (extracts)
Now those entries are just examples to show that things change. In general if I pick a past month and have a read through it will generally show that things have got more positive for Tam and for me. It also helps when a professional asks for info on how long something has been going on.
Keep a written paper journal. The process of writing it daily helps to dump the day. Allows your brain to dump some stuff and be a little lighter. Its also a resource for seeing things improve.
Surround yourself with specialists. Now let me clear how I define specialists : Not people who have read something on Facebook, not people who know someone who said this worked, not people who have a degree from the University of hard knocks, or a Doctorate awarded by the internet. None of these people are specialists and at best will waste your time and at worst they will do you or your child harm.
Specialists: Doctors, Psychologist, Social Workers, Incontinence Nurses, Respite Centres, GP’s, Nurses, Paediatricians, Radiologists, Sleep Nurses. (I know I know I missed someone, email me if I did) I am not going to list the non-specialists because they are too numerous to mention.
Be open and honest with all of these specialists. Listen to them and if you don’t understand tell them, they will help and find a way that works. They will all come together and help. They are not there to hurt you or your child, they are there to help. That is why I say be brutally honest with them, from a place of brutal honesty will come help, care and empathy.
Be open and honest with professionals, it will help them to help you.
If you find that one of these professional clashes with you in some way, talk to them first and if it still does not work ask for someone else, it never hurts to ask.
Me and Bev never asked for help from social service. We had a way of working together with Tam and we found our way. She did not want to send Tam away from us other than school, and I was with her on that.
Now soon after she died I was asked about sending Tam on a respite break. No No NO. No way could I send my boy away, he had lost his Mammy. What would he think with has Daddy disappearing for a night and day. NO NO NO.
Well, fast forward a year or so and me and Tam started visiting a respite centre. I remember my first visit so well. As soon as I walked in I could feel the calmness and the staff came across as very understanding and caring. Tam took to the place by running around and exploring, his shoulders dropped and he relaxed. I relaxed.
After a few months of visiting together, I took Tam and left him for a few hours by himself. I don’t think he realised that I had left him. I cried again. Then after a couple more months he stayed for the night. More crying.
Now Tam goes and has fun and comes back for big hugs and Daddy time. He needs a break from Daddy as much as I need sometime to recharge my batteries and do things that I cannot do with him.
Now when I am asked if Tam is up for respite in a couple of weeks the answer is “YES YES YES, Tam do you want to go to respite?” and much bouncing ensues.
Try everything even if it is scary. Take your time. Let the professionals help. Sometimes it takes a journey to find something wonderful.
For the sake of openness Tam is on Sertraline, Melatonin, and Promethazine hydrochloride. It has taken a long time to get used to but they help Tam with his separation anxiety, grief, PTSD and breakdowns (overflowing excess fizziness). Only the Sertraline is used on a daily basis. The other 2 are used as needed.
My reasons for not having Tam using medication are too complicated, embarrassing and historical to go into here. All I will say is listen to the professionals, look at the evidence they will provide you with and above all think about how they will help your child.
I will probably write a post at a later date about this subject as I think it is so important.
I know medication is a difficult subject and give parents a lot of anxiety and I will not sit here and say just do it. It is far more complicated than that. All I can say that after months of discussion and researching that we have done the right thing for Tam and for me that is all that matters.
On any subject to do with your child use the specialists around you. Talk to them, listen to them and make the decision that is right for your child, it might not feel like it right for you. It is so important to make the decision that is right for your child.
Grief is a cycle, dare I say an unwelcome friend that keeps coming around for a visit. He will sneak up on you and tap you on the shoulder just when you were busy with something. He cares not for giving you a ring or a text as to when he will visit, nor how long he will be staying.
If you read books on grief it will talk about the stages of grief. Well, expect to visit them over and over again. Your child will also bring their grief to you and will break your heart all over again. I think Tams grief hurts me more than my own. I grieve for his loss at times and put my own to one side.
Get used to grief kicking you in the teeth, knocking you down and kicking you again. It will become part of your life that will not fade. What you will do is wrap things around the grief; memories, pictures, events, life itself. Don’t try to avoid it, you will lose.
Grief will win and never leave you alone. Accept it, buy it a coffee when it comes around. By all means feel sorry for yourself, its ok to, just not for too long.
Somewhere sometimes when I started to talk to Tam about losing his Mammy I decided on a language of grief. With autism in the mix it became a simple plain and some would say dark language. “Mammy is dead”, “Mammy is gone and cannot come back”. No fluffiness, maybe no warmth. Death is cold.
I am not religious and have not used religious dogma and language with Tam and if you think about autism heaven and hell and life after death in the lords kingdom is both stupid and when taken literally is dangerous. We all will die. The language and literalness of autism is best met with simple terms.
Think of the terms we use in death; passed - passed what, gone to heaven - how do I get there to see her, gone to the other side - how do I get there to see her. I am glad I subconsciously stuck with the cold dark language as I think it has helped Tam and is not open to literal interpretation and misunderstanding.
Keep language simple. Think about how you would take it literally. Also tell anyone around your child to do the same.
Well you lose someone close to you it hits hard. One way it hits hard is the worry of being a single parent all of a sudden and how fragile life is. What happens to your child if something happens to you? Would anyone understand my autistic child and their ways?
My solution was to write a manual for Tam. It lists all kinds of things from his quirks, food likes, medication, sleep, and just who he is. It also has a list of people to contact that have a part in his well being and care. Tams Manual is version 2 now.
One of the by products of having a manual is that I don’t have to keep repeating things to people. I can just print out or send them the manual and let them read it. It has proved to be very useful.
Write it down. Write it down and write it down. (OK OK its written down)
On the subject of writing things down, I find that I write a lot more down now so that it’s easier to remember. I basically had a photographic memory (and still do to an extent) but now I have a filter that means it is not as useful as it once was. Grief does weird things like change your perspective about what is important. Sometimes grief takes important things and just ignores them, which is why I write journals, to do lists, memory notes, little reminders to myself to be good to myself. Sometimes it feels daft but one things I do know about writing stuff down is that it takes the stress of the tired brain.
When you have a child your sleep is never quite what it was before they came along. New parents are very visible in a crowd by their tired eyes. Parents of special needs children never get good sleep. Single parents of special needs children move on to a tier all of their own. If Tam does not sleep then I cannot sleep. Tam has gone nearly 80 hours with zero sleep. Yes 80 hours. The first 12-16 hours is no different from normal because you are unaware of the fact that you will be awake for the next few days.
Sleep is important for physical and mental health. All I can say on this is find ways to help your child and when they sleep don’t mess around, get your head down and at least relax, sleep will come.
Try and get some sleep.
Melatonin is helpful in bringing on sleep but Tam develops an immunity to it if it is used too frequently. It is however a help every now and again and I keep it in reserve for those moments it will be most needed or useful. Again I work on the principal of when it is best to use for Tam.
I think that it worth putting all of what I have talked about in to a box. Everything above is what I term our toolbox. It is a set of tools that we pick and choose from to solve the day and the challenges that we have in a brief moment in time. Decide on the ones that are useful for your child.
Get a good backpack
Two other things to add to the toolbox are a good backpack and music. Invest in a good backpack. Get one with compartments that you can throw all of the things you need and buy while out and about. Being hands free while out with an autistic child is important. Plus (and this is a big plus) if you put the straps over both shoulders is will save you from back injuries.
Music is a strange one. Music has a power over us and it is important to use it. Sometimes music you can dance to will help even if you don’t feel like dancing. Sometimes music that lets you scream the words out will help (Devan Townsend - Deadhead is good for this). Other times some music to make you cry so that you can take the fizz out of yourself and life is great. Don’t underestimate the power of music in helping you cope both when you are feeling down and when you are feeling up. Dance like no one is watching, cry like a baby and let it out, and sing like the world is listening and make the words mean something. Don’t be afraid of music that makes you cry and remember times gone by, it will help to heal you I promise.
Neil Peart talks about the “other guy” in his book “Ghost Rider” (excellent read). Well thats what comes out of grief. Neither me or Tam are the people we were before Bev died. We have had to change, we have a loss that we carry and that changes people. So the “other guys” are people we once were and now we are who we are. I have found it difficult to embrace that concept, and Tam is still finding the situation difficult. All we can do is to work our way forward on the healing road.
In current times I can only give one piece of advice on this subject. Take a holiday from the news, social media (all of it) and work out a more positive way of talking to people. I know it’s a bit old fashioned but have a phone call instead of sending a text. Have a video chat. Do anything else but get off social media for a bit. It’s toxic when you have lack of sleep, grief, mental health issues.
It’s good to talk.
Right now I am. Well that is stream of consciousness all written down. I hope I have helped in someway.
If you can’t be good be careful Alan & Tam
