A littel story I wrote

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REAL

LIFE

WITH

YOUR

SPECIAL NEEDS

CHILD

By: Jennings

Mom of a special needs child

LIFE SHOULD BE AS NORMAL AS POSSIBLE

How silly does that sound? Has anyone ever wondered what someone else is

thinking when they say " try to keep life as normal as possible " . " NORMAL "

what do they mean " NORMAL " ? Didn't normal take a flying leap out the door

the day you found out you have a child with special needs?

In some ways yes and in some ways no.

Just because you have become the parent of a child with special needs does

not mean that you can not give your child a normal life. The word normal

takes on a whole new meaning when you become a parent of a special needs

child.

For me, giving Kennedy a normal life means taking her to do the things that

you would take any two year old to do. Whether it's playing in the hotel

pool when we go on vacation, going to the grocery store or just taking a

walk around the block. When Kennedy turned a year and a half, I moved her

out the crib and into a toddler bed the same I did my older child at that

age.

The idea that a child with special needs should not go to certain places or

take part in certain events is not what is best for you or your child. The

more personal contact your special needs child receives, the better it is

for your child. Personal contact, music and activity are all part of what

helps your child be more outgoing and more aware of his or her surroundings.

Seeing and hearing different sites and sounds will help your child develop

an awareness that some may have not thought possible.

You should never be ashamed of your special needs child or let how being

around your child might affect other determine when or where you take your

child. There is no doubt that people can and will at times be cruel but

you can't let the ignorance of others control your life.

No matter where you go or what you do you will always have that one person

who will look at your little angel as if he or she has horns growing out of

their ears. But in most cases if you return that look with a look as if

they have horn growing out of their backside they will find something else

to look at.

With that said, you will also have those who will ask the rudest, meanest,

silliest questions concerning your child. In all honesty the best thing you

can do is treat them as stupid as they are acting. The important part is to

not degrade yourself or your child in the process.

Again, with all that said, you will also meet people who genually just want

to say hello and give a little smile.

A NORMAL DAY AT MY HOUSE AND YOURS

A normal day at my house starts out the same as it does at any other house:

diaper changes and breakfast. The only difference is that with breakfast

comes two different seizure medicines that Kennedy has taken since she was 7

weeks old. The next thing is getting everyone dressed and ready to go. Off

to preschool for the oldest and off to therapy for the youngest. Back home

after all is done, dinner, baths and snacks before bed. Again the only

difference is with Kennedy's snack, comes her seizure medicine again. On

any given day that could also include a trip to the mall or a trip to the

doctors.

A normal day in your house may be similar or totally different but that

doesn't mean it's not normal for you and your family.

PROGRAMS AND SUPPORT GROUPS

What of the first things you want to do is find out what special government

programs your child may be available for. You can start by checking with

your local Job and Family Services or by looking on-line.

YOU ARE YOUR CHILDS VOICE

Surround yourself with people who can hear it and want to listen to it.

That goes for anyone from your child's pediatrician to any special care

doctors your child may have. If your pediatrician does not want to learn

about your child's condition the best thing you can do for your child and

yourself is find another pediatrician. If you special care doctor doesn't

want to get involved in being aggressive in taking care of your child's

needs then again the best thing you can do for you and your special needs

child is find someone else. Don't be afraid to look outside your immediate

area. In most cases, going to a bigger city will give a better chance of

finding a doctor that has a better understanding of special needs.

The sooner you start Early Intervention the better off your child will be.

No matter what the diagnosis is the most important thing to do is put

quality of life at the top of the list. That means getting your child

involved in an aggressive therapy program as soon as possible. The process

of getting your child involved in a physical, occupational and speech

therapy program can make the difference between whether or not your child

learns to sit up, walk, feed themselves or say a simple word.

From the first day you are told your child has special needs you will have a

lot of people giving you advice or trying to tell you what is best for you

and your child.

No one knows your child better than you do. Don't let yourself be

intimidated by your child's diagnosis or the doctors around you. You spend

more time with your child than anybody and know your child better than

anybody. Even if you are told that your child will never do anything you

cannot let that stop you from working to give your child the best life

possible.

The day we were told about Kennedy a very old man who was the head of a

department told us he was sure he had the correct diagnosis and that Kennedy

would not live past two years and that she would never learn to do anything.

Along with that he told us there was nothing they could do for her and to

take her home. Even though his diagnosis was wrong, the new diagnosis

still does not give us a great deal of information to work with. Kennedy

does more than anybody ever thought she would. The brain and body are

amazing tools and no one can ever say for sure what a child will or will not

succeed at.

When Kennedy was a baby and she first started physical and occupational

therapy she would always be asleep when she would get to her sessions and

the therapist would say " ah she's sleeping " and half the session would go to

waste. Then one day I met two therapists who walked into the room and said,

" ah, she's sleeping " , woke her up and starting doing what they needed to do.

I walked out of the room and said, " what do I have to do to get them " !

After that I have always made sure her therapist were aggressive. I make

sure to tell doctors and therapists that if they do not want to get involved

and be aggressive than we don't have time for them.

DON'T BE AFRAID TO BE AGGRESSIVE

At one point during Kennedy's time in Early Intervention I was told that

they where cutting her therapy sessions back due to a fiscal emergency. At

the same time I also found out that raises where given to upper management

personnel. When it came time to go to the director of the program I in so

many words made it clear that cutting Kennedy's therapy was not an option.

I told him that I knew about the raises and that I would not only go to my

local and state government but also I would also go to the media. To say the

least Kennedy's therapy did not get cut. But had I not been aggressive in

my position who's to say what would have happened.

and Kennedy(7yrs,pmg)

http://www.geocities.com/kenjenjennings/

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