Saturday, February 19, 2011

Saturday and a mood...

Being the parent of the special needs child definitely has its ups and downs. I have not written about Stephen's issues yet, so I will briefly explain.

Five and 3/4 years ago, God blessed us with the most beautiful baby on earth! Our miracle, Stephen. We had our fleshly doubts that we would ever be parents, but the Lord showed us that it is not in our time, but His!

Just like every single other pregnant woman out there, I dreamed of the most perfect child, he would be brilliant, athletic, popular, talented, successful at everything he ever dreamed about. Nothing or no one would stand in his way!

When Stephen was born, I knew all of my dreams had come true! He was perfect, and being a mommy was more than I could have ever imagined from watching other mommies from a distance. I held him so much, I even had to go to the chiropractor because I messed up my neck always looking down at him the first few weeks! :)

He was a late sitter, crawler, and then walker, but I never thought anything about it. When he began teething, he slobbered so much! It seemed like we were constantly changing bibs, and he basically wore a bib what seemed like 24/7. Still, I didn't think anything about it. He was a great eater (despite being a projectile acid reflux spitter), and he was soooo very happy! Then he became a lover boy, and to this day, he still is!

Of course, there are those "milestone" charts on every single infant/toddler website on the world wide web, and Stephen was basically on-time with most of the things. However, when he got to the age of the speech milestones, I quickly noticed something was amiss. Seems like he started off pretty well, mom mom, da da, and it tickled us that he quickly learned to say "backpack" thanks to Dora and Diego. Soon after that, he seemed to regress a bit. He quit saying da da, and started calling daddy mum mum, he also quit saying backpack altogether. We took him for his 2 year old well child visit, and his pediatrician quickly picked up on his lack of words. Before the visit was over, I was instructed to contact WV Birth to Three, which is an organization that performs home visits to children with delays.

Apparently, I was in denial, and I was devastated! Birth to Three began working with Stephen seven months before his third birthday. Because of my denial, I did Stephen a huge injustice by not reaching out and getting him help before. This organization provided a speech pathologist, occupational therapist, and a developmental specialist for those seven months. Thank God for Birth to Three. We quickly discovered that he had oral muscular issues which caused all of that excessive drooling, plus, Stephen was diagnosed with Apraxia of Speech ( along with Proprioceptive Sensory Disorder ( What we didn't realize is that our son would have such a struggle ahead of him. Before he could do any of the things mothers dream about, he would have to learn how to overcome two huge obstacles.

Because of his delays, he was able to enter pre-school at the age of three...already labeled - "Special Needs." It still makes my chest heavy every time I say, hear, or see those two words. But unlike that time, I now have a greater understanding (not anywhere close to total) of the huge world of special needs.

Stephen's firsts year was okay, and he received speech therapy through the school system. His second year in the same classroom was a little different because the first two months was a huge struggle for him. For some reason, he didn't adjust well going back to school after summer break. Once he got back into the groove, he seemed to excel somewhat. At the transition meeting at the end of year two, I heard the words I never wanted to hear, "Stephen is not ready to advance to kindergarten." More crying, and anger, but I got it.

That summer, something happened with Stephen. Something finally clicked. His vocabulary exploded! And trust me, he hasn't shut up since. Yes, a blessing, but good grief, sometimes a little quiet would be nice! :) You know the old saying, "we can't wait until they can walk and talk, then we are always telling them to sit down and shut up." I would never say that to Stephen, but wow!

He began and is currently in his third year in the same classroom (which concerned me, and honestly still does to a point), and he is doing better than last year. He is still nowhere ready for kindergarten and it breaks my heart! This is it, he has to go on this year! Can they not see that something isn't right? Do you ever wonder how children fall through the cracks in the school system?

There is something extremely important that I failed to do through this whole entire process...I only sought help and worked over and over for endless hours with his speech delay. I never ever reached out for assistance with his behavior (the SPD/Proprioceptive). Boy, after he conquered his speech delay, the other part reared its ugly head, and it hasn't gotten any better.

Some of the things that he experiences: meltdowns, temper tantrums, extremely messy with toys, lives for chaos, plays extremely rough with peers, constantly has to be in motion, has no understanding of cause and effect, and doesn't feel a lot of pain.

Sometimes I want to scream! Sometimes I slip and actually scream, then regret it! I finally realized that Stephen needed something else in addition to speech therapy. Thanks to my wonderful boss, I discovered the Childhood Language Center at the Scottish Rite in Charleston. Wow! That place is absolutely amazing! Stephen has been three times now, and I think they just finished the evaluation sessions. Next week, he will actually start a therapy session. His therapist "gets it." Whew! What a burden lifted. She is great, and he took to her immediately. I am confident that he will be more than ready for kindergarten this year. If not, too bad, he has to go! And my heart will no longer have to break about him seeing his friends move on and not getting to go with them.

I have to say though, even on his bad days, Stephen is still my biggest blessing. He is my life. God saw fit to put this precious gift in my arms, and I will always do what is best for him. I just hope I am doing enough for him!

When he smiles, or hugs me, or gives me my million kisses a day, it erases all that is bad in the world! I love my boy, and I thank God for giving him to me! He is perfect, and as stubborn as he is, I am sure that he will be brilliant, athletic, popular, talented, and successful at everything he ever dreamed about. Nothing or no one will stand in his way!

I ask all who read this to please read the following and dwell on it for a moment:
**Many people (and I used to be one of those) see parents out with toddlers who are acting up, and their first thought is "if that were my kid..." you can finish the sentence. Well, I am here to tell you that until you know the child, think twice about thinking or saying that. Unless you walk a mile in the shoes of a parent who has a child who suffered from any type of sensory disorder, you have absolutely NO right to place judgment! I am in no way saying there are not kids out there who do just need a good smack on the behind, but like I said, until you know the situation, it is not fair to judge.


Rachel said...

God doesn't make mistakes and He made no mistake with Stephen nor the parents He chose for Stephen. You guys are amazing parents and are total inspiration to me, from fertility issues to dealing with every day life with Stephen. Sometimes it isn't one day at a time, but more like one breath at a time! I love you guys and am so thankful to know you! I love that munchkin so much!!!! <3

SUE TAYLOR said...
This comment has been removed by the author.
SUE said...

What a wonderful, loving post to recognize Stephen's (my grandchild) special needs! He is very much loved by all of us and we only want the very best for him. I'm so happy he is getting the help that I am sure will prepare him better for the future. You and Todd have been good & loving parents and God only gives you the child he wants you to have because with prayer He will help you prepare Stephen for the future. My prayers are for you all without ceasing. Love you all.

Sara said...

You may already have this book, but I saw this on Books-A-Million's featured page and wanted to share. It's called "The Einstein Syndrome: Bright Children who Talk Late" by Thomas Sowell and it talks about how there are many children with issues delaying speech and other developmental problems, who are actually "normal" and exceedingly smart.

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