Yes, you are right. Your husband (or whoever the primary bread winner is) doesn’t understand. The simple fact is, that he can’t possibly understand – because he is not experiencing life in your shoes. Nor are you experiencing life in his shoes.
It took me a long time to figure this one out. Maybe others out there cotton on to things faster than I do! Being the primary carer of a special needs child is not only hard work, but it can be very lonely. Especially when the one person who is meant to be your key support doesn’t understand what it is like to be “you”.
It is wonderful to be able to be there with your child every step of the way, to help them learn and grow. Don’t get me wrong, I love that I can stay home and be a full time mummy to my son. My days consist of watching Harry play (AKA taking mental notes of things he likes, dislikes, and any new interests or skills so I can relay them to his therapists), playing with him (AKA at home speech, OT and phsyio programmes incorporated into play), taking him to therapist appointments, taking him to doctor appointments, attending playgroup (with other special needs children), attending mothers group (“normal” kids), counting and recording how many seizures he has in a day, and attending various other appointments. The difficulty with this is that my days are completely focussed on Harry, and most relate to therapy of some description. He is constantly either doing some sort of “special needs” therapy, or socialising in “special needs” circles – and when he is with “normally developing children” it is blatantly obvious that he is miles behind them in all aspects of development. So, when I get upset and my husband tells me to “stop comparing Harry” and “stop focussing on his disabilities”, I say “you don’t understand”. And he doesn’t. He can’t possibly.
“If you have a tray of pink cupcakes and one green cupcake – seeing or noticing that one is green is not “comparing” it to the rest, it is green, and the others are pink. It is an observation, and you cannot “pretend” that the green one is pink.”
Having your main support person, who as the other parent in the family you would expect to be going through the same thing as you, not understand why you are upset or what you are going through, can leave you feeling completely alone. It can also make you question yourself – am I going crazy, am I too negative, am I focussing on things too much…?? Other than a complete role reversal, there is not an easy fix to this problem – explain to your husband why you feel the way you do, he doesn’t have to experience it, or even understand it, just being aware of how you feel is a good start. Once you start to understand that it is not his fault that he doesn’t feel the same way as you, or have to endure the hard parts of your day, while you won’t suddenly stop feeling alone, you will eventually stop blaming him for not understanding, and that is a great place to start.
It must be remembered that your husband is also playing an important part in your, and your child’s life. He is going to work every day to earn the money – and money is a necessity! He may miss out on seeing your child’s first steps, or hearing the first word. It may be more difficult for him to develop a close relationship, and when your child cries and only wants “Mummy”, surely that too is heartbreaking.