Here are five ways people have created an awkward moment for us by something they’ve said or done:

One

Peer over our son’s stroller, who has poor muscle tone and preferred turning his head to the right as a baby, and say hello.

Snap in his face and turn his head yourself saying, “I guess you don’t want to look at me, huh?”

Two

Walk right up to us at the state fair, look at our son in his stroller, and ask us if he has a disorder of some kind. (Really?!)

The woman did go on to explain she has a granddaughter with cerebral palsy and worked with children in hospitals years ago.

This can be a startling question, however, when you aren’t expecting it from a complete and total stranger.

Three

Ask if we have seen a such-and-such doctor….neurologist, physical therapist, naturopathic doctor, etc.

Of course we have!

We want our son to get the best care, medical attention, intervention, and plan of action as possible.

Four

Ask how old our son is, and upon hearing he is two, go on to tell us about what a fun age two is.

They really start to express themselves, show their personality, and on and on and on.

This is a tough situation as a parent of a child with special needs because you don’t care to explain everything to them, and you aren’t quite sure what to say.

So far in our experience we have seen that people just assume everyone has healthy typically developing children.

They mean well, but don’t consider the fact that or son may not be expressing himself, running around, and wearing us out like someone else’s two-year-old.

Five

Make comments about our son being a little snuggle bug, so tired, a sleepy little guy, not quite awake yet, etc.

Because of our son’s low muscle tone it’s very difficult for him to pick his head up when we carry him, so he typically has his head on our shoulder, thus putting him in a position where he looks like he’s going to sleep.

What I really want to say to people following their comments about this is, “HE HAS A MITOCHONDRIAL DISEASE AND CAN’T PICK HIS HEAD UP!”

But that would be awkward, wouldn’t it?

I am thankful that while I love them equally they are so very different from one another.

When we told our little girl she would be getting a baby brother or sister she was really too young yet to understand completely the change that was coming her way.

None of us understood, as we didn’t plan to welcome a child with special needs into our world.

But do you know who has probably handled it better than anyone?

Our little girl.

This is just a little note I’ve put together to our daughter on how I’m feeling about her today and her relationship with her brother.

To Our Daughter,

Proud is not a strong enough word to explain how I feel about you.  

From the day you met your little brother in the hospital, you have been a better big sister than we could have ever dreamed up ourselves.  

While we didn’t know yet the challenges life would bring with that new baby boy, you loved your brother the same.  

You’re still too young, really, to know any different, but soon enough you will ask questions.  

Other children you meet and become friends with will ask questions.  

Just this weekend you led a little girl over to your brother, who was sitting in his Tumbleforms chair in his wagon and you said, “This is my brother.”  

You had the biggest smile on your face, and were so excited to introduce your brother to a new friend.  

As I looked on I admired the simplicity of your statement.  

That’s your brother, and you love him.  

It brings me great joy to see how proud you are of him, and to see you want to share him with others. 

You are his biggest cheerleader and he adores you.  

You help make his world go round.  

You delight in his smiles and giggles as much as we do, and you share in the joy he brings to our family.  

We can all learn a great deal from watching the way you interact with and protect him.  

You don’t see him as, “different”, in any way.  

I am so hopeful that you will grow up with a level of tolerance and compassion unfamiliar to other children your age because of your brother and your big heart.  

I am so proud of the big sister you are. 

Love,

Mom

Skidders

We have kneepads and socks by Skidders that help our son get a little more traction when he is playing along the floor on his Scooot.

The kneepads have little gripper dots all across the surface to help grip the floor as your little one moves.

We also have shoes by Skidders that have a gripper bottom that wraps all the way around the toes.

These are great for the times your child really wants to use their toes to help move but normal socks are too slippery.

Scooot

Our son loves his Scooot.

At twenty months old he is not zipping along the floor as quickly as I hope he someday will, but he is content to be lying on his belly and kicking his little legs and feet to propel himself across the kitchen floor.

We can appreciate the fact that this mobile toy was invented specifically for children with special needs, and it will grow with him as he learns to sit on his own!

Peek-A-Zoo apps

You can download the lite version of these apps to your iphone, tablet, etc. and have a quick interactive game for your child to play.

Because our son is young and therefore has a short attention span the free lite versions of the Peek-A-Zoo apps is enough to entertain him.

We like this series because of the bright colors, sounds, and because the screen is easily activated by touching anywhere on the screen.

This is important if your child has a difficult time hitting a small target.

Our son can touch his hand or fingers anywhere on the screen and get visual and auditory reinforcement.

GoTo Seat

We love our GoTo seat.  It comes with us to restaurants, in the stroller, to the grocery store, in the wagon, to the dinner table.

It affords our son many more “normal” experiences than he would have without it.

Owl Pillow

I originally purchased this little Skip Hop owl pillow to support our son’s head and neck better in his gait trainer as he had weak neck and shoulder muscles.

It served its purpose there, and we have continued to be able to use it in the stroller or car seat for a little extra support.