Strategies For Coping With Your Child’s Diagnosis

Has your child been newly diagnosed?

Do you have no idea what to do? Or where to start?

I have devised a list that will help you to accept and deal with your child’s diagnosis. My son was diagnosed with Optic Never Hypoplasia, Cerebral Palsy, Autism, Developmental Delay, Hypopituitarism, and Hypothyroidism.

At the beginning, it was very hard. I understand that you may be going through an absolute nightmare. My heart goes out to you. You have probably already been told this, but it does get easier! It all becomes part of the routine. We adapt to every little change and set back. We get stronger and nothing can seem to break us. What seemed a major issue before, like getting a massive bill or a broken appliance will no longer faze you!

#1 Research…

When my son was first diagnosed, every single second that I had spare I was researching everything there was to know about his conditions. I found reading other peoples stories was amazing. I wanted to know every single little aspect of what was going on with my child. I wanted to know what could happen, treatments, testing that he may have to do, causes of conditions etc. This was all very helpful with coping with my child’s diagnosis because it was a way of being prepared and knowing that there are other people that live very fulfilling lives with the conditions he has.

#2 Write A Diary…

When my son was first diagnosed, I found that I didn’t really have many people to talk to and to tell you the truth I didn’t really want to talk about what was happening. So I started a diary. Each day I would write what was happening, how I felt, what I had learned, anything new I noticed with my son etc. This was only for my eyes. I found that because no one else was reading it or having to hear about it I could be as open as I wanted to be. I never had thoughts of self-harm or harming others. If you do, it is OK, just please seek professional help. Whether it be counseling or a helpline.

#3 Take Notes And Look Up Meanings…

When my son was first diagnosed, there was lots and lots of specialists and doctors appointments. Now these specialists and doctors, talk about things in their own jargon. To them, this language is everyday language to them. To me, it’s not. I would take notes at the specialist and doctors appointments. I would ask for the spelling of different words, just so I could research them when I got home. I would also ask for copies of all test results as they came back. Again, this is so I understood what was happening and what each one meant and how to improve each one. By the end of it, you will be very well educated in your child’s diagnosis.

#4 Read, Read, Read and Read…

Online there is a lot of different websites that have newsletters and updates that you can subscribe to. I joined a lot of research websites. They look into how certain conditions are caused and a lot of research cures. Stem cell treatment is a big one at the moment for most conditions. Not only can improve some conditions but can cure parts of it. Every month, I get a newsletter or update from most of the websites I have joined. It not only keeps you up to date with what is going on, it has little stories of other people that you can read about how they are doing and what they do for work or study. It is really good to see that others can live regular lives and it does make it easier knowing that this is possible for my child. so just keep reading. it is important to know what is going on.

#5 Take Time Out For Yourself…

Now you have a lot going on when you child is first diagnosed and during the first few months. I know you are tired, stressed and your mind is running a thousand miles a second. It is important that you still take time out for yourself. Whether it is going for a coffee with a friend, going to watch a movie, getting your hair done, going to the gym or even a walk. It is important that you look after your own well being. If you are doing absolutely everything, it is important to take a breather and recharge. Please don’t feel guilty for needing a time out. You have a lot going on and no one that matters will ever judge you for taking time for yourself so that you can be a better parent and be stronger for your child.

#6 It’s OK, Not To Be OK…

Let the emotions out. Don’t bottle it up, let it out! I really hate going to the doctors or specialist appointments and getting asked the dreaded question “How are you going?”. Some days, that is the question that sends me to a blubbering mess! It is not that often people ask how you are going through all this. It is always how is Coleby going?. I think sometimes you are just so worried about how your child is going and making sure that they are fine all the time, that you forget that it could be affecting you. And when you stop and get asked How are you going? it all just floods back and catches up with you. Take the time to talk about what is going on, remember it is OK not to be OK. No one is expecting you just to carry on like normal. It is a hard thing to go through. In the long run, sharing your emotions will make you a happier person and you will be able to deal with what ever gets thrown your way.

#7 Avoid Numbing Behaviors…

Everyone deals with pain and stress differently. There is a lot of pain and stress around your child getting diagnosed with a condition. This is a type of grief and loss. Avoid numbing behaviors, this means avoiding the use of illegal or prescription drugs, excessive alcohol consumption, and binge eating. Sometimes, when people are feeling down, they turn to things that make them feel good. Things that make them feel like all their problems disappear. When your child is first diagnosed there is a lot of mixed feelings and concerns about what to do. If you feel that you may be depressed, please seek professional assistance. Please don’t medicate yourself or turn to alcohol or food as a way of feeling better. In the long run, these won’t cure anything and all it will do is cause more issues and stress in your life.

So there are 7 things that I think are very important Strategies For Coping With Your Child’s Diagnosis.

If there is anything that you feel I may have missed or anything that you feel that may help others, feel free to leave a comment below.

Just remember, you are not alone and there is always someone there to lend a shoulder or an ear!

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6 Comments

  1. Hi there,

    Thank you for sharing your stories, with the raw emotions and all! While I do not have a child with a disability, I work in the education system with students who have disabilities. You are a light that will be helping others on a road that is not always an easy one. Kudos to you!

    • Thanks so much for stopping by and for your kind words!

      As you work with students with disabilities, you can relate on some level as you would interact with the parents on a daily basis.

      You do a great job with helping children!

      Thanks again for your comment

      Regards

      Hailey

  2. Hey Hailey!
    What fantastic information!
    My child suffers from chronic eczema and has been in and out of hospital with this.
    I find it very stressful, and your tips have helped me to see a way of coping.
    Thank you for providing such timely information.
    I especially like the idea of keeping a diary. I am certainly going to try that one!

    • Hey Marcie

      Thanks for visiting my site! 

      Makes me happy to think that what I have written can help others!

      My son Jaek also has eczema and asthma. I’m told from doctors that eczema and asthma go together. Have you tried goats milk soap? This works really good for us. 

      Keeping a diary is great. It’s also great to reflect back on and you can see that you start to cope and accept things better and your feelings change a lot.

      Glad you got something out of my post and thanks for sharing information about your own child!

      Be sure to come back and visit from time to time.

      Regards

      Hailey

  3. What a powerful post and great suggestions! I am a mother of 3 boys as well. Parenting is hard!

    Have you ever read “Welcome to Holland”? Its a short poem on an experience with special needs child. It is amazing. I highly recommend and would love to hear your application of it.

    • Hi Autumn

      Thanks so much for visiting!

      Sometimes I feel like I am more of a referee then a mother at times lol Do you feel like that?

      Yes, I have read “Welcome to Holland”. I agree with this to an extent. I mean when you find out your having a baby you plan so much and then when they arrive and you find out things aren’t exactly what you had planned for there is a down point in your life. I’ve never really looked at it as a regret. Yes I have been disappointed but you really learn to adapt and find positives. I find this poem to be correct to an extent but in then end it’s not all bad. We have a lot of fun and it is so exciting and a big high when you work so hard to teach your child to do something and they finally do it! 

      Thanks so much for taking the time to comment!

      Regards Hailey 

      Ps I will write a post about this poem and my thoughts on it! Feel free to stop by from time to time

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