What to do When it Gets Difficult?

Today’s subject is dealing with the hardest elements in special parenting. Things could be fine for a while, and then they can get difficult.

There are many challenges related to special parenting. Some of them are so heavy sometimes that we end up very sad and angry at the same time about what we are going through.

Sometimes It seems too difficult, and we feel that we can’t handle one more day of all this.

Not every day is the same. It doesn’t matter at which stage of the special parenting you are. Your child could only be a baby or a 3-year-old, or a teenager or in their twenties. It doesn’t matter if you are still in shock or desperate in front of your new reality: a special needs child.

A special “needs” – don’t resonate with me on so many levels. Each one of us is different and has different needs. I don’t use it as a label. Still, I understand when people say “special needs,” referring to someone who lives with physical and/or mental challenges.

It doesn’t matter if you are in the denial phase.

It doesn’t matter if you are already in full acceptance. Even if you are in a complete acceptance of your child’s condition, there are still heavy moments and triggers that can put your mood down.

I have a personal example of this. From Joana‘s age of 4 – to 6, I completely accepted her condition, and I found my way to be unconditionally happy. You have in the old articles how many positive changes that brought in our lives. As I became more happy, joyful, liberated from the pain and the despair, she became calmer, smiled, happy, enjoying her everyday life from her perspective.

Still, there were times when things were difficult. I can explain it this way: no condition or situation is a picture in a frame. It’s of a changing nature, like life itself. We see proof of that in each segment of our lives.

Things can get difficult.

What do I mean by that?

For example, finding out that the child has an incurable illness. Or having seizures after a long pause (when you all kind of relaxed and thought that maybe epilepsy is gone for good).

Things can get pretty challenging if your special child becomes a teenager and starts dealing with its own issues. I had a conversation with a very disturbed mother because her 16-year-old daughter with Down syndrome started to call her names and was shouting at her, refusing to communicate with the parents.

Things can get rough and challenging if you surrender to the grief of your unmet expectation. I had a conversation with parents who feel so much pain and grief that their precious baby boy is recently diagnosed with a rare disease that will put some physical and mental limitations on him as he grows up. They are so sad that the boy won’t look like them and won’t become a doctor as they’ve always planed.

I can name a personal example here too. There were times when our situation was good and stable, and then the indescribable crisis came. When Joana was 5 years and 2 weeks old, she suffered a serious epilepsy seizure that lasted for hours with a 43 C fiber. It came suddenly when we were all in such a good place – especially her. She really started to make progress and was showing more potential.

The next period was definitely one of the most challenging times we’ve had since she was born. We stayed in a hospital for 5 months after that.

Another way of how things can get difficult is tantrums. Even if things are fine right now, you can end up with a crying and screaming child the next minute. The screaming can last for hours every day, a few weeks in a row.

Just yesterday, I talked with a mother who told me: when she is stable, I am so calm and happy. I get new hope. I feel joy.

I can relate to this so much. When we were out of any crises with Joana, I would feel exactly that. Very calm and happy. Until the next crises.

There are many other ways of how things can get difficult.

But let’s look at the solutions for a minute.

I really can’t offer you any other answer than personal development.

The expectations we have create suffering.

According to Wikipedia, “Personal development is defined as activities that improve awareness and identity, develop talents and potential, build human capital, facilitate employability, and enhance the quality of life and the realization of dreams and aspirations. Personal development can take place over the course of a person’s entire life. This is not limited to self-help – the concept involves formal and informal activities for developing others in roles such as those of teacher, guide, counselor, manager, life coach or mentor.”

Incorporating such activities and playing with different methods and tools will give you clarity.

It will help you understand that when your special child is in crises, it doesn’t do that on purpose. The child means nothing wrong. When our special children have crises, they reflect our emotions. They are the mirrors of our insecurity, our fear, our nervousness, and that’s why it hurts us even more.

I know that this is not easy to hear, but it’s true. Our children mirror our nervousness and fears.

Here is a little self-test: If the child is screaming and is in the middle of a tantrum, in your opinion, is it a bad or a good thing what is happening?

It’s neither. It’s simply a fact. The child is disturbed about something, and it goes through its own phase. Probably every one of us would say: this is bad. Of course, because it affects us. It’s disturbing, and it causes us pain for not being able to help our child.

But how we are going to respond to this situation determines if things will calm down or escalate more.

Personal development can help us understand our need to constantly categorize things, events and people. Constant categorizing puts us in longer pain and prolonged suffering.

I am not saying to accept a screaming child as a pleasant picture. I know that’s not a fun way to spend an evening. But it’s not necessarily a bad thing. Your child needs to go through that process. Instead of curse the moment, give a hug to your baby. Acknowledge how much you love your child and that you accept it as it is.

When things get difficult, turn to your inside. Establish a spiritual practice. Listen to what your inner being has to say.

Start your day with a morning routine. Do some exercise, meditation, and read at least 2 pages of a book.

Make a decision about this day: today is going to be the best day of your life.

Play with this thought for a while and see what comes out. It might turn out true. It might be that this day really is going to be the best day of your life.

Ask questions and then journal and see what comes out of it. This could be the best thing that can happen today. Just listen carefully.

And remember – you are doing all of this for yourself. To be more in alignment with who you are and to give yourself (a very needed) self-care. Know that if your batteries are empty, then you won’t have much to give to others.

And then what will happen?

  • You will be more focused on positive things. What we are focusing on – that enters in our lives even more;
  • You will notice that you are surrounded by positivity. Events, people, literature, and everything you get in touch with, will prove to you how life is beautiful;
  • You will think of possible solutions. You won’t stay where your problems are, but you will move toward a solution and therefore a relief;
  • Your creativity will increase;
  • You will understand what lesson you are actually learning through this experience.

If you are interested in more on this subject, you can find below some of the previous articles.

Talk soon,

Maya

 

 

 

Who is Joana?

 

Having a special child can be a wonderful experience

 

Our story

 

7 Things not to tell parents with special children

 

Acceptance and continuing

 

6 Things what to tell a parent with special child

 

Why special parent coaching?

 

Bruce Lipton experience.

 

7 Tips for surviving your child’s hospital stays.

 

11 Reasons why are special parents often overwhelmed.

 

Ignoring your emotional state is not the solution.

 

15 Reasons why personal development should be a priority to you.

 

5 Reasons why special parents feel guilt.

 

Why is it important to travel with your partner (and travel alone)?

 

Why should parents accept their child’s disability?

 

My special child is my blessing.

 

Having a disability is normal.

 

6 Misconceptions around special children and special parents.

 

7 Things I’ve learned since I have a special child.

 

What to do to make pain easy or go away?

 

What to do if you just found out your child has disabilities?

 

6 Posisible reasons why we are special parents?

 

How to behave with special parents and special children?

 

8 Principles for a healthy relationship with your partner – Special parenting and your relationship.

 

Special parenting and friends.

 

Special parenting and coping with negative emotions.

 

5 Stages in special parenting

 

4 Steps to start with personal development –  special parenting

 

Every end is a new beginning

 

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