At our two year check up we raised concerns that our son’s use of language had stopped and was worrying us. This started about ten months of appointments and stress, trying to establish why.
Initially, Autism was the front runner as the reason for this, as according to Google (one of the greatest and worst things ever invented) and some of the professionals we met with, said he showed some signs.
Part of the process for figuring out the cause was to see everyone and start ruling things out, which is great as it means all bases are covered and nothing should get missed, but also ridiculously frustrating.
Going to so many appointments, seeing so many people, to be assessed, having the same conversations with everyone, literally the same questions at all appointments!!!! No one tells you how painful this process is. No one can tell you how vexing it is to go to all those appointments but have no answers and not seem to be getting anywhere (you are, but being rational when your in the process isn’t really an option).
From the outside looking in it’s a logical process of not ruling anything out anything, until you prove there is no issue, but the reality of being in that situation, you won’t know unless you go through it. Knowing that every day of not knowing, is one day lost in your kids development. It’s one day more that they will have to catch up at some point. It’s one day more of stress and uncertainty. It’s one day more where he can’t say Mommy or Daddy, can’t say I want a drink, can’t tell you what TV programme he wants, so is standing in front of the telly pointing at what he wants, can’t say, I love you.
It’s always one more appointment, where you’re playing Russian roulette with your kid’s mood. You can’t tell him that the waiting to be seen is to help him and figure out what’s wrong, so we can help him. You can’t tell him that it’s just another 5 mins. So you go and you hope that he deals with the unknown well and in good humour. The reality however is that as often as he is ok he is definitely not ok!!! He gets engrossed playing with the toys in the waiting room so does not want to go in the room with the Doctor. He doesn’t want to get out the car because he doesn’t know what’s going on or where we are. He is in the room, but quickly becomes bored so wants to go and explore or climb (I swear the kid is part monkey as he climbs everything). All this, whilst your trying to have a grown up conversation, to give answers to the Doctors questions in order to try and get some answers to the questions we have.
Its no-ones fault and like I said that approach makes sense but it doesn’t make it easier to go through.
No one tells you about the strain it can put on you as a Dad. I have been told by numerous people “it’s different for a mom”. Yeah it is, because a Moms bond is different to a Dads bond. Not because they have different roles in the family but because they are different people. Saying things like that almost detracts from the pain, uncertainty, stress (I could keep going but you get the idea) that you feel. The comment is well intended but if you let it out, it could completely backfire. As is the case with a lot of comments you get, they are well intended but sometimes you just don’t want to hear it, because sometimes it doesn’t feel like “it will be alright”.
It’s hard to put into words the fact that at times you don’t allow yourself to get upset or feel too much about what you’re going through, because you have to be strong for your kid, for your partner, for your Mom, your Dad, your Mother in law, your Father in law, siblings and friends. No one asks you to and you don’t have to, but you feel like you should, because you’re the Dad and that’s your job, protector, provider, the unmoving rock in all the madness and chaos of the situation.
I could go on for ages about this process and the difficulties involved but to cut a long story short, we had to have him put under general anaesthetic to have a hearing test as he point blank refused to have a normal test and he was diagnosed as severely deaf. We went in with a healthy happy kid expecting maybe grommets and came out with a deaf kid, a disabled kid.
The mix of emotions felt was overwhelming.
OH CRAP (I am obviously keeping this clean and this is the closest I can get)
HE CAN’T HEAR
HE IS DISABLED
But is he happy?
This was kind of the end of a journey, we could explain WHY, we had the answer we were searching for. This has however started us on a very different and life long journey with our son.
This has led to a very difficult 6 months. Guess what? The diagnosis led to another round of appointments, which we are still going through, but the difference is these are for a tangible reason. You are going to get moulds made for hearing aids, you’re going to get your hearing aids, you’re having your hearing tested to figure out how, how has this happened. There is still the Russian roulette with his mood, but it makes a bit more sense now why he can get so upset. It’s a little bit more bearable because you are taking steps to get things sorted, don’t be fooled, these are baby steps not leaps, but they are steps.
All of this put a strain on my wife and my relationship, no one tells you this, they shouldn’t need to, but as I have said it’s easy to get caught up in what’s going on and lose sight of some things. All the guilt, did one of his falls as a toddler cause it? Did I pass on some dodgy genes? The stress over appointments getting cancelled and pushed back, fighting to get him into an appointment room when he doesn’t want to go in. The crying. The non-stop inconsolable crying, when every now and then it all gets overwhelming. The coming to terms with knowing your son is going to have to adapt to the world around him and he won’t be “normal”, a horrible word, but you know what I mean.
We are lucky; we have a good family and good friends and are good for each other. So, although it put a strain on our relationship we dealt with it, we supported each other when we had bad days, when we had awful days and when we had days that made us want to give up. I can see how this could break a family, I can also see how it can make a family, and so far we are doing the latter.
The best description of dealing with the diagnosis is, grieving. You grieve for the loss of the life you expected your child to have. It sounds a bit dramatic but it’s the closest description I have heard. Like any grieving process it’s personal. It’s a journey you have to make on your own and deal with in your own time. For me it was quite quick and I could move on and accept it. For my wife it was harder and took longer, and was very difficult, but that’s her story to tell.
But is he happy?
There have been many tears over the past eighteen months for me and my wife and those close to us. There are going to be loads more along the way. We are just starting out on our journey merely six months in.
He has hearing aids now. If your kid has to have hearing aids please please please do not expect the magical unveiling you see on Facebook videos of kids all of a sudden smiling and giggling and it being this wondrous moment. It can happen, but not always. We hoped for it but he wasn’t particularly bothered and barely reacted. That’s not a problem it doesn’t mean they aren’t working or will never work, but if you go in expecting this grand unveiling, this magical moment it can be absolutely crushing.
He is being assessed for cochlear implants which is great it’s another avenue to explore to get him communicating and that’s our focus.
He has secured a place at a mainstream school which looks amazing!! It has a deaf support unit based there and the school is set up to support and help develop the child, not put a tick in the box for OFSTED.
Through all of the hard times when my wife or I got upset, when she was beating herself up for not doing enough, or any other of the stupid things you put yourself through, there was always the same response that I came back to, to end the discussion. BUT IS HE HAPPY? The answer was and is always yes. Of course he gets upset the kid is three and a half for Christ’s sake! But, he IS happy.
We have had fun at some appointments chasing him round the hospital waiting room, climbing in and out of boxes. He loves swimming. He is a proper boy and loves playing rough and being swung around and climbing everything. He loves his cartoons and films and gives awesome cuddles sitting watching Monsters Inc or whatever flavour of the month is. He is smart. Sooooo clever. He can’t hear and so can’t talk, so communication is difficult but he has figured out how to get his message across and get what he wants. He is amazing.
He is different to what we expected we would get when we had a baby. But then life rarely gives you what you expect or want, if it did I would have won the euro millions by now and be living the dream lifestyle.
If I could give a parent going through the diagnosis process or who is trying to come to terms with a diagnosis any piece of advice it would be this: Whenever it gets hard or overwhelming or you have doubts or you think you aren’t doing enough ask yourself one question, is he happy? (It’s become my go to, almost a mantra) I can pretty much guarantee that your answer will be yes and if it is you’re doing a good job. You are, I promise.
Your there to make your kid happy in childhood and protect them and if they are happy, even though they have this “disability”, you’re doing awesome. So keep your chin up, take pride in all of the small steps that your kid makes, revel in them, go to town on there successes. Things take on a significance that other parents won’t get but it doesn’t matter.
It’s your journey, with your family so enjoy each and every second of it.
Jon Rowe - Riley's Dad