Friday, August 5, 2011

Living Life..... Special Needs Style

I have seen a few posts lately titled something like... things you need to know about special needs families..... so I thought I would play along.

The five things you should know about special needs...... all rolled up in one day..........

1. Not many things my special needs child NEEDS can be bought at Wal-Mart.

Walkers, wheelchairs, braces, bolsters, wedges, feeding pumps and bags, adapted toys, switches, trays, formula, shoes, and the list goes on.

Have you ever had to run to the store in the middle of the night to grab a can of formula for your hungry baby? Maybe you can't find your child's bottle so it is off to pick up another one.  How about when your baby begins to develop into a toddler and his legs are strong enough to bear weight? Off to the store you go to buy a cute little push toy with all kinds of fun buttons and noises. Maybe the summer has come and you head to the park without thinking about how amazing it is that there a swing your child can enjoy.

One of the most frustrating things I have found about raising Makenzie over the last 4 years is the inability to be able to provide her with the things she needs and likes with any kind of quickness.  Most of the things Makenzie needs can not be bought at a local store and everything has to be well planed out. On top of that is the insurance company who has the authority to decide if certain things are truly needs without having ever met my daughter. Of course there are things that insurance won't pay for and most of the time those are things that only Donald Trump could afford. It seems like providing Makenzie many of the simple necessities in life always involve waiting, crying, phone calls, and fighting with some one. The difference in cost on typical childhood equipment and anything modified for special needs child is staggering! SO Frustrating!

2. Mommy always know best.

This obviously applies to all moms but takes on a new meaning when you have a child with special needs.
There are many people who have input in my child's. Makenzie has a whole team of doctors, therapists, and teachers who want to help. There are care conferences, reports, health plans, and education plans which document and justify almost everything about Makenzie's existence.

I have been very lucky to have a team who understands when push comes to shove.... Mommy knows best.

The one area where I have had trouble getting professionals to understand this is the school system. However, I am working very hard this year to get them to listen to me and understand that although I may not have a masters in Special Education I an equal part of the team which makes decisions for Makenzie. I am trying to remove the emotion and make this a business matter where the winner is Makenzie!

After the meeting I had with the principle of Makenzie's new school yesterday I think we are off to a good start. (more to come on the details of the meeting later)

3. The day when you can scold your child with special needs could not come soon enough!

There was a time in Makenzie's life when I thought she would never misbehave again. There was a long time when we knew that she had no control over her actions and reactions. That time is over and I am beyond excited about it!

Of course Makenzie does not act out in the way most of us would imagine a 6 year old to. However, there are many things that Makenzie can control like lifting her head up, pushing with her arms, sitting down into her chair without extending, following directions, and paying attention to what is going on around her.  At this point in Makenzie's life not only can she control these things but she can do them when asked. When you put the too of those things together you now have a child with free will. To add icing to the cake, Makenzie now understands the threat of stopping an activity if she will not follow a request.  

For example, today when Makenzie was in her walker she would not keep her head up. She insisted on flexing and was being super stubborn. I looked my daughter in the eyes and told her that if she would not lift her head up that she was going to have to get out of her walker. Makenzie looked at me and got a huge pouty face. I repeated myself and up went Makenzie's head and off she went. Loving it!!!!

4. As a mother of a special needs child I see every accomplishment, no matter how small, as a miracle.

When all of mt kids were little they learned to smile, laugh, roll, sit, crawl, walk, and potty train and I celebrated. At the same time I took most of those milestones for granted. After Makenzie's accident taking those things for granted is a thing of the past. To this day I still get butterflies in my stomach and my heart swells to see my children smile, to hear them laugh, and I see every little new movement they makes.

Yesterday we trialed one last talker. Watching Makenzie be able to find her voice, play games, and pick music on the talker  made my heart feel like it was going to explode.

What a miracle life is!

5. Being a parent of a special needs child comes with very high highs and very low lows.

Yesterday morning when I woke up at 3:30am on the couch I realized that I had fallen asleep watching a movie with the boys. I got up, made Makenzie's water, dosed her medicine, started it, and I was wide awake. I hopped on the computer. Looked at a few sites, popped in my memory stick and looked at a few pictures. I ended my computer session in tears feeling helpless to provide Makenzie the things that she needed. (see number 1) I laid back down on the couch but my mind would not turn of. I watched the sun come up and about 6:30am I finally gave up and got up for the day with a grand three and a half of sleep to get me through the day. It was a low low!

However, I ended the day on a high high. Watching Makenzie use the talker so successfully my my tired body and mind feel alive again. I listened as the DynaVox reps eeewed and aaaahed about how well she was able to access the device. Then I headed to the school and had a very successful meeting with the principal and the district. In fact it was the best one ever to date. I spent time preparing my thoughts and got most of the answers I wanted. I was also able to express Makenzie's needs without compromise but with a great sense of calm authority. More importantly the principal was GREAT!!! He was kind and patient. He took two hours to speak with me and never once appeared frustrated or anxious. He showed Makenzie and I around the school and acted very excited to have Makenzie at his school. From the sound of it this program is a hundred times better then the one at the old school and the aides sound amazing. There is still much to talk about and work out but I could not be happier!  High highs!

Some days I feel like I live on a roller coaster. There are times when I just want to jump off but quickly the tide changes and I feel life could not get any better. Times when I can clearly see and understand God's mighty hand working in my life.

Anything else you would just love to know?

Believe... Prayer Works!


ferfischer said...

Nice list - glad things are going so well for you, and am hoping you can get her into school this year!

Cari Jean said...

Wonderful post! I can totally relate...thanks so much for sharing this.

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