This is the first time that I have gone on a chat site. 

I have become increasingly aware that I am very disappointed about that fact that my 3 year old son, John, has global developmental delay. He is our only son and he is a totally adorable person. He has a delightful nature, is very easy to take care of, is very affectionate. He eats well and sleeps well. He has generally been an exceptionally healthy boy and is rarely sick.

At near 3 years old, he does not walk, maybe he understands the odd word but maybe not. He certainly doesn't  say any words. He is able to use his fingers to feed himself but can’t use cutlery and he cannot drink from a cup, using a straw instead. In addition, at the age of about 18 months, John had a seizure. Since then he has had three more seiaures. Seizures in young children are usually not too serious and don’t leave lasting effects. In John’s case, the second seizure went for much longer than normal (an hour rather than 2-3 minutes) and he needed assistance to breathe during that hour. Maybe he has epilepsy. We have put him on anti-seizure medication as a result. The seizures are the exception to his general state of excellent health. Each time he has had a seizure, we’ve been 3-4 days in hospital, Leo and me, monitoring things.

Since John was born, my wife has found being a parent difficult. She had a difficult childhood and a very difficult relationship with her parents and especially her mum. She had post natal depression, most significantly for the first six months. Features of this include wanting to run away, and strong feelings of lack of confidence to take care of John.

When at 10 months we were told be a pediatrician that John might have significant delay issues and possibly was on the autistic spectrum, we were both shocked. We put John through a battery of the tests that they suggest to try diagnose the condition, and got back results of non-specific delay.

Six weeks after the shock of the initial diagnosis, I was ready to get going again on life and being a parent to John. My wife however found it hard to get over. She became obsessive about wanting reassurance from me that John would catch up, asking me many times a day about it, wanting me to repeat my reassurances frequently. She found it hard to cope with the prospect of him remaining delayed. I went along with the story that we expected John to catch up, both because it was always possible that he would, and because my wife found it so difficult to live with the prospect that he would not.

I have been John’s primary carer. My wife has not taken care of John during weekdays almost ever. She has usually found it to anxiety producing to be alone with him. I have taken John to every one of his appointments with doctors of many different stripes, physios, occupational therapists, speech therapists and a bevy of alternative therapists as well, without my wife being present. This was after we both went to the first two appointments with paediatricians and my wife found it too difficult to cope with it and could not even hear what they were saying, so overtaken was she by anxiety.

I should say at this point that my wife is in ‘normal’ life, a very strong, capable, resourceful, loving person. I have often thought of her as the stronger of the two of us. Even while she has been having difficulties with being John’s mum, she has acknowledged this fact and sought support for her and for us from friends and family. For example, she has organised for her best friend to come with me to appointments to the paediatrician so that I would have support even though she felt incapable of providing it.

Holding one opinion myself but being asked by my wife several times a day for around a year and less frequently but often after that, has been very stressful for me. Sometimes I have been overtaken with the burden of the responsibility and I have broken down crying. I have spoken to some of my good friends about my situation and how I feel, which has been incredibly helpful.

A few months ago, I began the conversation that I had been dreading, to say that I thought that it was more likely than not that John would not catch up, and that I was finding it too difficult maintaining a common story that he would. I proposed that we should live with the expectation that regardless of whether John caught up, or didn’t catch up, even to the level of not being able to live independently, we would all have a good life anyway. That is, that John could have a good life and that my wife and I each and as a couple could have a good life. This would take the terrible pressure of John to catch up, and would stop us being hostage to a fortune that we could do little to control.

To my surprise, my wife responded really well to my suggestion. We had two intense conversations, which left me in tears maybe more than at any other time in my life but now we have changed our joint story and expectations. My wife has got involved in participating in Leo’s various therapies, she has started to attend some of his therapy sessions and things have improved a lot. I feel very grateful for it.

Now that this change has occurred, I am aware of strong feelings that have surfaced in me that I did not expect. I have become aware that I feel angry with my wife for leaving me for so long with so much responsibility. And I have become aware of deep feelings of disappointment that our son is delayed. Like all parents, I hoped that John would be normal. I had a range of hopes and expectations about the experiences I would have with John as he grew up.

My biggest hopes perhaps were about talking with him and being able to have conversations as he grew up, experienced more of the world and became more aware of who he was. There is a strong chance that I won’t be able to do any of this with him.

One thing I should say here. My wife feels pretty sure that she does not want to have another child. She says that, if she had been with a man who did not want kids, she probably would not have wanted to have one herself. So, having one child was the compromise, the overlap of what we were both up for. In any case, I would have some misgivings about having another child so that I could have at least one ‘normal’ one. That seems like an awful attitude to carry round about John.

The desire to have another child, to my mind, should stem from wanting to have another child in his/her own right, not to fix up or compensate for John’s abnormalities. That said, I did always think that I’d want to have two or three kids, so it is not at all just because of the challenges with John that I think about having another child.

I am struggling at the moment with my feelings about being in the situation I’m in. Although I can’t say for sure that my negative feelings towards John are having a bad impact on him, most people think that kids pick up these types of things and Leo is pretty sensitive. So I think that my negative thoughts and feelings are probably affecting him negatively.

I am not beating up on myself much about this. I think that my feelings are pretty normal and understandable, and I feel like I have been a really good parent. All the same, I hate feeling like I do. It’s not good for anyone.

Sometimes, I even feel angry at John for not being normal and for not doing the things that other kids do. What an awful burden to put on a person who can’t help it in any case! I feel resentful towards him, and towards fate.

I know that there are many worse things that John and we could have to contend with. Apart from the seizures, he is very healthy. Children with chronic and painful conditions, not to mention life threatening conditions, would be another and more upsetting trip entirely.

I know that we have an enormous amount to be grateful in John. He really is a delight to be with. A while ago, to help myself realise what we do have to be grateful for, I tried to think of what it would be like if John died tomorrow. What my wife and I would lose both from losing his present day gorgeousness, and from losing the future together that I hope we will have. This was helpful to some extent but it feel a lot short of getting me over my difficult feelings.

I still feel this deep sense of disappointment. This feeling is becoming more apparent to me and I feel like I need to do something about it. For example, I am supposed to be working now but I was feeling overwhelmed by disappointment grief.

This morning I took him to a playgroup. I was with him, trying to give him a nice time while he was getting a bit repetitive and obsessive in his movements with the toy he was using, not using it as it was designed to be used and getting tired and upset. The other kids were doing the things that ‘normal’ kids do and that John doesn’t, like running around, calling out and playing with each other. I just felt tragic and upset, having to be strong, keep the show on the road, being positive and caring towards John and friendly to the other parents. Poor me!

I hate feeling like a victim. Intellectually, I understand that I have so much to be grateful for but I feel stuck, despite trying to think and talk my way out of these feelings. I am getting a book about the experiences of several parents in having children with disabilities. I am hoping that I will find reading that helpful.

This seems to be a spiritual problem more than a material one, seeing John with eyes that recognise what is wonderful and precious in him. I know that my biggest problem is the overlay of expectation that I bring to being with him. I know that almost all parents in some ways and times have to let go of their expectations about their kids and deal with a different reality. All of this I at least partially understand intellectually, but I can’t get it emotionally, spiritually, with my soul, and I’m left feeling empty.

Hi Joseph  - welcome to Big White Wall, I am glad you found your way here too :)

Firstly, you sound like such a wonderful, patient and loving father and husband. I have such a strong image of you on the nursery floor with John, putting on a brave face for him while struggling with these strong emotions inside. And your boy sounds delighful and happy from how you describe him - so from my perspective, these are the resoundingly important factors to hold on to.

As for your emotional reaction to your sons situation, you know this is very normal by the sounds of things, but are perhaps just not sure how to express them without feeling guilty or like you are letting John down or adding to your wifes anxiety? Does this sound familiar? I think Rozes advice to connect with other mums and dads who have children in a similar situation is a really great idea. You might meet some who are a little further down the line, who can reassure you and offer you support. Perhaps ask your sons doctors if such a support group exists, and if not, how about starting one yourself? I'll bet you are not the only dad struggling with these feelings...

Keep talking to us if it helps - wishing you, and John and your wife, all the very best for now... SK xx

Joseph, welcome to the wall, I found your post one of the most emotive I have read.

SK and Roze have given good advice and I can't add much, except to say that as hard and painfull as it may be, you have to be totally open and honest with those around you if you want to get maximum support.

I was struck by your comment that your wife appeared relieved when you finally admitted that there was more of a problem.

That says to me that all the time you had been reassuring her, she had known inwardly that all was not well but she did not want to say that to you because you appeared to think that it would all be OK.

It's possible to go on for years like that but eventually something has to give.

So, if you need help ask, don't pretend you can manage if you can't it will only make matters worse.

Good luck.

I'm so sorry that you're having to go through this- no matter how much we love our kids, it's difficult in so very many ways when we find out that life isn't going to go as smoothly as we expect. 

I've got three autistic kids, so I can understand what you're saying.  I love them all dearly, but it's so hard to watch them struggle, and it's so exhausting to care for them, especially if your spouse isn't supportive from the beginning.  I was a single mom for a very long time after our kids' diagnoses, and it wasn't easy. 

I've got loads of resources on living life with special needs kids...I just joined today after seeing your post, but I think that you can message me if you'd like me to share any of them. Hang in there- I won't say that the pain ever really goes away, but it is still possible for your family to have a good life, and have happiness along the way. I wish you all the best- it's not an easy journey for anyone.