Getting Sleepy!

It's been a long time. I don't know where to start. We ended school last year with some measure of success. Meaning we were having more good days than bad and "A" was actually learning something. We started Kindergarten the same way, we had weeks of "good" days, "A" is learning, learning, learning, I am not surprised, he is a extremely intelligent child. What bothers me is when the learning stops, when a child who was at one time deemed "to intelligent for a IEP" ( I kid you not, can you believe someone would say that), well when this child starts struggling again, when the worksheets are sent home not completed on a almost daily basis. When he tells me: "I hate school", "I'm tired of doing the same thing every day", "I hate singing songs, I hate worksheets, worksheets, worksheets",  and to top it all.... when my five year old is suspended for behavior that is a direct manifestation of his disability, not new behavior, but behavior that has been going on since Pre-k.  All of those things bother me.

I have been told by at least one professional that the only way my child would reach his full potential is to remove him from public school, I have been told by yet another professional that I would do him a great disservice if I pull him from public school. I just know I am tired.....

I'm tired of having to fight every day for the education my child deserves. I'm tired of notes from teachers saying that "he is acting like a regular Kindergarten child" one week, and then a suspension two weeks later. I am tired of people not doing their jobs, not following his IEP, not trying to make the classroom environment conducive for learning.

You can't put all children into a pot and expect them to learn the same way, you can't expect them to be happy, you can't expect them to conform. I have a education degree, I am not the dumb "crazy" mom they suppose me to be....I studied some Psychology as well. I know all about Gardner's Theory of multiple intelligences.... I know that even "typical" children learn differently, it is not a one size fits all model. So what I really have to wonder is...How do ANY of our children ever learn anything?

Yes I guess I am in a bad mood. So I am going to find something to be thankful for. Sometimes it is hard to be thankful, I mean I ask myself on a daily basis, why me, why my children? I know things could be a lot worse though. So here are a few things I am thankful for:

• I am thankful for my children, I am thankful their little quirks and how they make life so interesting, I really can't imagine them not being just who they are.

• I am thankful for the many wonderful people God has put in my life, the people I would have never met had it not been for our situation. People who are a blessing in many ways, some of them don't even know it.

• I am thankful that things aren't worse, I am thankful to be able to hear my children's sweet voices, I am thankful every time one of them climbs on my lap and says "I love you". 

•  I am thankful to be able to hold them in my arms, I know all to well what empty arms feel like.

• I am thankful to God, though I know at times I feel so alone, God is always there, even in the times that it feels he is so far away, there is always that small whisper.

"Let your conversation be without covetousness; and be content with such things as ye have: for he hath said, I will never leave thee, nor forsake thee" Hebrews 13:5.

"A" with his friend!

The never ending fight...

I promised in one of my other posts that I would talk about fighting. Having two children with disabilities I can choose to do one of two things, I can either sit back and let everyone else make decisions for my children. I can let them decide how much therapy they get, what services are offered (if any), etc.

Or...... I can fight for what my children deserve, I can fight for their rights to live just as full a life as the "typical" child sitting next to them.

Fighting isn't easy, sometimes it seems like you never win, that no matter how hard you push, how many advocates you talk to, how many laws you know, well that you never get anywhere. I remember a saying from my son's NICU days, one baby step forward and three big steps back. That is often the way it goes in the world of special needs. It seems like I get one small tiny victory and then something (or someone) else comes along to say, hey I'm still boss, guess I showed you. What can I do but keep going. I know I am making more enemies than friends, though I don't intend for it to be that way. I can't understand how a parent who fights for her children's rights, who tries to see that they have everything they need to succeed, how is it that this parent is often considered a nuisance, a pain in the neck, often "crazy".

 I have actually seen Special Education Teachers blog about "crazy" parents, not that I'm saying there aren't some crazy ones out there. Just because a parent is fighting for what they believe in, does not make them crazy! I could put up examples of what I have endured so far in trying to get the services my children deserve, but I won't, if I do I am not much better than those teachers who slander parents on the Internet. A parent fighting for their child does not mean they are crazy!  It means they are a warrior! We as parents need to stand together for our children, maybe then we can begin to win a few battles, maybe even a war!   Are you a  warrior for your child???

Two of my boy's! 



Weekend Blog Hop

  Join me at Lucas's Journey with SPD for some blog hopping fun! I hope to gain some followers for my blog and some new friends, we can never have to many friends in the world of Autism!   

Happy Birthday!

A. is five! It is hard to believe that it has been five years since the nurse put that little red headed baby in my arms. What a happy day that was. After my oldest son was born and years were spent trying to conceive, it was a wonderful surprise to find out my A was on the way! We celebrated with his brother who also had a recent birthday at a birthday bash at Fun Expedition!  Here are some photo's from the day!

The Birthday Boy!

Opening presents!

 

Life of the atypical parent....

Hi everyone, it's been a while. I am feeling out of sorts and have been that way for a while. There has been a lot going on with both of my children and I feel like I am being pulled in a million different directions. For some reason this is just a difficult time of year in many ways. There are so many days that I feel like I could just crawl in bed and stay there, but I don't have that option. Being a parent with special needs children is difficult any way you look at it. I have had the honor to meet so many great parents, parents who will do whatever it takes to make sure their kids are getting the things they need. But, it is overwhelming and you often feel like no one could possibly appreciate what you do. So do you want to know what it's like being a parent to children with special needs? Well, here is what it's like for me anyway!
1. Get up and drag yourself out of bed, rush to make sure that everyone gets where they need to be on time, even when one child decides to take all of his clothes off at the last minute and the other is refusing to leave the house without his "bad guy" transformer and at least three Superheroes and you can't find any of them....
2. Finally get one child on the bus and get the other one in the car, get stuck in the last minute rush, try to park in disabled parking spot only to find the ONLY two spots taken by someone who DOES NOT have a disabled tag or decal, and have to get tardy slip for being one tenth of a second late.
3. On the way out the door be stopped by someone (therapist, principal, other school personnel), telling you they need to discuss something with you.
4. Come home, get online to try to research the best possible therapy for your child's situation, find the greatest thing, google it and try to find therapist in your particular area, no luck...
5. Call doctor thinking she may be able to tell you something Google didn't..... find out, yes that is available, if you want to drive two hours.
6. Grab something unhealthy for lunch and then call all of the people who are expecting you to call them back....
7. Talk on the phone for what seems like hours...
8. Glance at the clock and realize that it is almost time to go pick your child up, rush out, stop by post office or grocery store as fast as you can.
9.Fight the after school traffic, don't even bother trying for disabled parking as they are all blocked anyway....
10. Pick up child, talk to teacher, rush home in time to get other child off of bus..... OR
11.Realize that child has 4:00 appointment in location that is 30 minutes away, call someone and beg them to get other child off bus for you.
12.Rush child to appointment arriving 15 minutes late, but that's okay, you are going to have to wait two hours before he can be seen anyway, getting home around 7:00.
13. Meals, baths, bed........

I guess I'm trying to be a little funny, but that is pretty close to the truth! No I don't want pity, I just want someone to recognize that what I do is difficult. No, I don't lay at home every day in front of the television. There are about a million more things I could add in there, and it varies each day. Sometimes I have to fit a appointment in for myself or for my oldest son as well. Some days I have meetings that I like to go to, some days the phone rings non-stop. It varies!! God bless all the parents who are out there quietly taking care of their children and fighting for them in a million different ways! We'll go into the fighting part in another blog! They are worth every minute! :)

My prayer for my children...

Please bless my children, keep them safe,
give them health and happiness.
Give the other children understanding,
and give them a few true friends.
Give their teachers wisdom,
and let them be kind.
Heal them lord,
but if that is not in your will;
Give me the strength and patience I need,
Let me be their advocate.
Help me to stand up to those who think they know more about my children,
when they really don't have a clue.
Most of all dear Lord,
let them realize how special they are.
Special not because of their disabilities,
but because you created them,
with a purpose.
Let them realize their gifts,
but most of all;
Give them happiness!

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