What does it mean to have a Special Needs Child

I was having this conversation with another Mom. What does it meant to have a special needs child?
Basically when your special needs child is born or diagnosed with their "issues", you are thrown into a whole new world that you probably did not know existed.

You are constantly going to appts for different specialists, therapy appts, sick child appts, ER visits and tons of extra things that do not usually happen with typical children.

Then there are the different types of equipment that is sometimes needed, walkers, wheelchairs, feeding chairs, gait trainers, standers, orthotics, and splints etc. And don't forget the stares and/or comments when your child is using these products.

And of course there is the constant worry that some little weird thing is something serious, for me it is seizures. Is that blank stare a seizure? Or is the twitch a seizure? When is the big one going to hit and will I be able to handle it if it does? Is Evan breathing too fast? Are his lips looking a little blue? Is he going to sleep through the night tonight? Is he going to get into food that will make him choke? What if someone gives him something that will make him choke? Did he just aspirate and is he going to get pneumonia? I could go on and on but I would probably meet the word limit.

Other issues to deal with are the follow up phone calls or emails to make sure equipment is being ordered or that the people that need to turn in paperwork are doing it. Phone calls to make sure people do what they say. Different people and therapists coming to the house. Spending more time in the car than you want to. Finding a capable trustworthy person who will show up when scheduled to take care of your kids.

Dealing with the ups and downs and moods that accompany this life. Dealing with friends with typical kids who do not always understand and make comments that hurt your feelings. Even though you know this is not their intention it still hurts. Feeling like you can only relate to others with special needs kids.

Trying to deciper cries from your child who should be able to talk and tell you what they want. Crying yourself when you just can't figure it out. Spending time and money on alternative treatments and researching new things and old things about your kids diagnosis.

Knowing that you are experiencing something that most people do not get to. You have this awesome kid that teaches you so much. The greatest smiles. Support from family and friends.

I know this sounds negative but this can be a really lonely world sometimes. Knowing that your child cannot always participate in every activity or that even if a place says it is handicapp accessible it is not always the case. I do not know what I would do without my group of special needs moms, they are the ones that truly understand, it does not matter what level of functioning our kids are at or if one is higher functioning than the other, we all support each other and help each other through the hard times.
And I am not forgetting my family and other friends either, we would be lost without them.

I have to tell a little story that just warms my heart. Yesterday Gabriel was talking about how it would be if Evan could go to school with hima nd he asked me if it was possible to fix what was wrong with Evan's brain. I had to tell him no, that his brain did not develop correctly and that is why he is the way he is. Gabriel was a little dissapointed. Oh, how I wanted to tell him yes we could fix it and he could have the little brother I am sure he misses just like I sometimes miss the little boy I imagined I would have. But just like me I know Gabriel would not change Evan for the world. As I was typing this I hear Gabriel trying to figure out what Evan is trying to tell him and the other day he built Evan a train track because he was bored. I just smile and think how lucky I am to have the kids that I have. Cynthia is good with Evan also and takes him on walks and helps us out a lot. I know that her role will change and I hope that Evan's struggles help Gabriel and Cynthia appreciate the little things and also be tolerant and understanding of those who are different from us.