When you have a baby EVERYONE has an opinion on how you should handle them. And they TELL YOU, often whether you want to hear their opinion or not.
They tell you not to let the baby sleep on the stomach. They tell you not to let the baby sleep on the back. The zealous breast feeding patrol comes after you with a vengeance – because if you don’t breast feed you will NEVER have a strong bond (I am two generations into proving this one wrong). You should add an extra layer of clothing when outdoors. Wait – take that extra layer away, the baby will be too hot!
And then they start telling you what you should be doing as a new parent, for yourself.
Go out on a date night, they say. It’ll strengthen your marriage, having had a new baby. Never mind that if you don’t sleep soon you will pass out – you should dress up, go out and RECONNECT with your partner, right now. BUT, don’t leave the baby too soon. They will have separation anxiety. Anxious? Have a glass of wine, it will calm you down. But don’t forget to breast feed!!!
With all of the advice flying around when having a typical child, the pressure to do it “right,” especially with the first baby, can be tremendous. I remember absolutely bawling because my new baby daughter and I could not get breast feeding to work. The breast feeding patrol (all right, the nursing staff and breast feeding specialists but man, are these folks CONVINCED it’s the way to go) worked with us endlessly but the milk just wasn’t coming in and she was starting to actually lose weight in her first 48 hours. I finally switched her to formula and everything worked out just fine. Some people say the bond is not the same but we could not be closer as mother and daughter (same thing happened with me and my mother, by the way). But, I wish someone would have eased my stress by saying it’s not a failure if you can’t make breast feeding work. That formula is OK, too. But no one did.
Moving on in time, I was more than blessed to have a son with special needs. He is now seven years old. And, let me tell you if you want to quiet all of the advice giving and background noise that occurs when you have a typical child, have a child with special needs. Want to really confuse them? Have a child with eight different diagnoses.
For the longest time, all I heard were the proverbial crickets chirping. NO ONE HAD A CLUE.
And then the barage of advice continued, albeit a bit differently.
Instead of sounding confident that their advice was the right thing, their presentation became wary.
“I don’t know if this would work since your child is different, but for my child, this [INSERT ADVICE HERE] worked really well!”
Here’s where both situations have something important in common. They are both background noise in the life that you are creating for yourself. This is NOT to say that advice can’t be valuable or useful. But, especially when living the special needs life, it is extremely important that you CRAFT your life in a way that works for you, your child and your family. People don’t talk about this. CRAFTING your life seems foreign. A whole lot of people live life letting it happen to them. Here’s where you can make a difference for youself.
What kind of life do you want to have? What kind of daily life will make it easier for YOUR particular family situation to not only survive but thrive? Typical families have it far easier in a lot of ways but families with special needs NEED to consider this question carefully.
Do you feel like your daily situation is working for you? Or do you wish your fairy godmother would come in and overhaul everything with a wave of the magic wand?
Or, here’s one a lot of parents can relate to – is there a part of your day that you just dread because EVERY SINGLE DAY it goes wrong and you just can’t bear it anymore? As in, morning is OK, coffee is working, activities go by, everything is fine but you are just DREADING whatever o’clock because almost every single day something happens to set your child with special needs off and you can’t bear the thought of it?
How did I know this about you? Well, let’s just say I’ve been there.
Here’s where CRAFTING your life comes in.
And while the well-wishers mean well and the do-gooders are trying to do good, they don’t really understand, do they? They haven’t walked your walk.
Do yourself a favor. Smile and nod. Tell them that you are SO APPRECIATIVE of their words of wisdom and will definitely take their input into consideration. SMILE. And never think about their input again if you don’t find it valuable.
It is FRUSTRATING when they seem like they know it all about YOUR special needs life, isn’t it? They truly just don’t know. And you have bigger fish to fry than to waste a single second being annoyed at them.
Instead, take that time you would have spent being annoyed and think about this – if you have a specific situation or time period of your day that is JUST NOT WORKING, what can you do to CRAFT it differently? Instead of it happening to you every day, what if you made choices that created a different outcome?
Sometimes this seems impossible. Insurmountable.
It’s not.
I know you are exhausted so creatively problem solving isn’t necessarily your strong suit right now. But you need to do SOMETHING to craft your life because it isn’t going to craft itself. So, try this:
- Focus on a small piece of your day. Maybe it is the waking up process. Maybe it’s the lunch making process if you make lunch for you child to take to school (picky eaters, aren’t they?). Maybe it’s bath time.
- Isolate the problem. Is it that the mornings are crazy rushed and rushing makes your child with special needs crazy? Make lunch, lay out clothes and bathe the night before. Putting shoes on to go to the bus a battle every single day? Let it go, at least for a while. Maybe the two of you can pick out special character “walking to the bus” slippers and send shoes to school in the backpack. How amazing would that be if being creative and a little flexible like that ends a months-long streak of daily meltdowns?
- Make a plan. One that works FOR YOU AND YOUR CHILD. Not necessarily what the people in your life whispering in your ear think would work for THEIR child. They may not agree with how you are going to handle things. They don’t have to. It’s YOUR world.
- Execute the plan. Try it out for a couple of days.
- Evaluate. How did it go? Is it working? Is your stress easing for that particular time of the day? If yes, keep going! If not, try something new. Keep trying something new until it works.
Then, you take this system and apply it to another part of your day. And another. Until soon, you have CRAFTED your life. It applies to every area, too, not just to raising a child with special needs. Of course, there are things that you will have no control over, that you can’t craft. But there are SO MANY things that you CAN craft. Try it. You’ll see.
“They,” are going to tell you what they think about what you are doing. Because EVERYBODY has an opinion.
Everybody does have an opinion. But not everybody’s opinion matters.
Who’s opinion matters? Yours. Is it working for you and your child? Yes? BOOM!!!!
That’s all that matters.
You’ve got this.
In what way have you crafted your life to make it better for you, your child with special needs and your family? Please share in the comments below.