In our recent blogs, we've talked about the enrichment of having a child with special needs and how it turns everything upside down.
While change can bring positive things — such as the Corona era, which taught us that working from home is a viable and often more efficient alternative to the office environment — non-chosen changes can be a personal challenge to deal with.
In addition, the situation is often that there is a HUGE lack of resources among the people who can contribute to the daily challenges because the tasks are too many, too unpredictable and not least because the public authorities who should step in, open their arms and help you on your way with your new living conditions, they fail, push you on, push you around between public authorities and leave you with the feeling of being alone with all the challenges.
Daily life is disrupted, everyone in the family has to learn to fit in under the new conditions, many have emotions bottled up, holding them back and struggling to breath.
After all, why speak out about personal needs when others are suffering from serious illnesses and have far greater problems?
The new lifestyle can feel lonely. The days go by and you're drowning in tasks. When night falls and the apartment or house gets quiet, the mind starts racing and as a natural consequence of not getting enough sleep, you'll be tired tomorrow and VERY tired the day after. Your body is TIRED TIRED TIRED, but your head won't let you sleep. You're on alert even at night. How is your child doing now? It's important that you are constantly aware of fluctuations in your baby's general condition, whether it's giving medicine or food at odd times or a noise from the road or garden that wakes you up.
In any case, you lie awake with all your worries. Alone and sad.
At that moment, Google becomes your best friend. It's natural to search for answers, look for help, find useful experiences from others, BUT it can also create new worries.
Well-intentioned advice is good, but often not realistic, because your mind is on the child with special needs. You know this and we know this because we are and have been in the situation.
It is important that you know that you are not alone!
Because every other parent of a child with special needs has been here before you. And they understand!
And they are usually easy to talk to because they are up at night, just like you.
They've thought the forbidden thoughts, just like you.
They've taken out their frustrations on the wrong people, just like you.
And they love a child with special needs, just like you.
Use the other parents. Network with them. Create human profit through them.
And once you've found a workable path and come out the other side, listen to the well-meaning advice to seek psychological help, family therapy or other professionals who can help you further clarify and accept your new situation of 'having an ambition to be the best parent to a child with special needs'.
You are WELCOME to share your thoughts with us. It's natural to feel like you're falling short, but — unfortunately — that's rarely what we share on social media.
Let's change that together. Let's be honest so we can help each other better!