WTOW- Easy to Love but Hard to Raise Giveaway Results

We had several wonderful entries for this giveaway. I entered the number into a random results generator at Random.org and came up with comment number 1 as our winner. Here’s what she said

Kristina Osgood said...

Trying to explain the issues with family or friends and their comment "but she looks normal to me" has got to be one of the most discouraging things ever. It's frustrating to try making people understand what is going on when they can't see it themselves. And when they see a behavior or are with her during a seizure they pretend it a)didn't happen or b)"All kids do that".

Congratulations! I will be contacting you to get your book to you.

 

WTOW- Easy to Love but Hard to Raise (Giveaway)

Invisible disabilities. HMMMMM……… My family has our fair share of them. “Invisible? Huh?” An invisible disability is disability that majorly affects a persons life, yet may not be immediately apparent to an onlooker. You may not know this, but about 80% of all disabilities could fit under this category. For parents this can be so difficult. If I had a penny for all the times I have heard someone say something about my children “looking normal” I would be rich. (yes I said penny) For my family I faced my first challenges with professionals. ie; therapists, Pediatricians, etc. After we jumped over those hurtles, we still have to jump through hurtles of friends, church members, random stranger . This can make a parent feel lonely. So, we look for other mom’s with kids like ours, web sites, forums, support groups, books etc. When we find them it’s like a breath of fresh air. we realize we are not alone.

Easy to Love but Hard to Raise is like a breath of fresh air. it contains real stories from real parents. Parents in the trenches. this book contains tips, statistics, advice, hope, laughter, tears, and much more. The over all message of the book is to let you know that, YOU ARE NOT ALONE!

I am excited to announce that the wonderful people at Easy to Love Hard to Raise have offered to give one of you lovely readers a copy of this book. You have three days to enter this give away.

To enter the giveaway simply leave a comment telling me how your life is affected by an invisible disability.

*please make sure to include your e-mail address in your comment.

Special Needs Homeschooling- Housework

Shortly after writing yesterday’s post, I went to the restroom and came out to find this. I thought that would be a great way to answer the question, “How do you do it all?” I DON’T!!!!!!!

At any given moment there are 3-4 loads of laundry to be done despite doing multiple loads a day.  I probably do 4 loads of dishes a day, and that does not always get done in a timely manner. Every time I get the boys room cleaned they go and do something like, dump muffin mix all over the floor. HAHA. Laundry is rarely put away, because I loath doing it. We do have chores as a part of our routine, and I don’t keep a nasty house, but it is simply not possible for me to keep up, and to keep my kids at home, and happy. There are certain aspects of our routine that are more important to our sanity than working myself to the bone keeping a spotless house.

So what does that have to do with Homeschooling Special Needs children? Well, we get school done at the cost of delayed housework, so I don’t do it all, I choose what is most important at that moment. If we are doing school work and having fun, then all of a sudden we are having a meltdown because I am also trying to do laundry, and dishes, and the sound of the dishwasher is to much, the dishwasher will be turned off, and we will probably end up with a full sink because of the delay.

We currently live in a small apartment, (moving soon) so school happens out in the open at our teeny tiny dining room table.

Both of my older children have sensory processing issues. The dining room/classroom is pushed up against the kitchen, making it impossible to not hear the dishwasher, Washing Machine, and dryer going. And so brings forth challenge of “doing it all”. And so I don’t!

You may be sitting there thinking, “But I thought children with Autism, ADHD, and the like, thrived in an orderly environment,?” They do!

Insert confession here> There are days when we “take a break” and get the house back in working order. It’s not the ideal scenario, and I am constantly attempting to improve my time management so that I can get it done, but I will say, pausing a load  of dishes and letting the sink pile up so that I can create educational success for my children, is worth it. 

I’m not giving you a license to live in filth. Remember, your children (any children) thrive in an orderly environment. But let’s face the facts. Many children with special needs have sensory issues, so the next time school is going well, and then all of a sudden it’s not, take a look at  your surroundings. What is going on? Is the dishwasher running? What about the washing machine? TV? Go ahead and let yourself and your child off the hook, and turn it all off. Who known's, you might just be able to accomplish several days worth of school work in one sitting. That could come in handy for those days where formal schooling is just not happening.

So in short, we struggle with sensory issues. I make accommodations at the expense of other things not getting done. Relax, peace is more important than an empty sink!

Isaiah 54:10

Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed," says the LORD, who has compassion on you.

 

Sensory Possessing is a real struggle for our family and for many other families. Here are some links to a few great articles highlighting the struggle with SPD. If you are not familiar with SPD, you may find the information interesting.

•  http://confessionsofanondomestichousewife.blogspot.com/2011/03/autism-awareness-meltdowns.html
• http://mytwohappyhomeschoolers.blogspot.com/2011/08/challenges-of-homeschooling-child-with_01.html
• http://www.sinetwork.org/about-sensory-processing-disorder.html

I hope you somehow found encouragement in my post. I am certainly not a wordsmith, but if you stay tuned I will do my best to be open and honest about things that are hard for most to talk about.

An Odd yet Frequent Question

I get asked asked a question often that seems odd to me, but I guess in a way I understand. I was asked this question recently, and then I heard a hear wrenching story about an unwanted child, and it got me thinking. So what is the question? “If you had known about all of the health needs, and mental health needs of H & C would you still have adopted them?”

Every time I am asked this, I always say well, yes! But I am also stunned that people even ask this. It is kind of offensive. I’m perplexed that this is how people think. I mean, there are no guarantees that the child you gave birth to won’t have health issues, or mental health issues. If you knew that when your child was 6 he would develop a Brain condition and require surgery after surgery, would you still choose to have that child? When you give birth to a child, you have no way of knowing if they will develop Autism, or have ADHD, or develop seizures, or the many of unknown possibilities. You just take them as they come, and do your best to be the best parent you can be, and rely heavily on the Lord to get you all through. You love that child, because they are your child! It should be no different with an adopted child!

So in short, I may not have known about all the “issues” that would arise, but I did know some, and I would do all over again, because when God leads a child to your home, they are your child no matter how they got there. 

Our Top Homeschool Accommodations

Homeschooling with special needs is challenging, But one great plus is that you can make available to your child any needed accommodation without a fight. Here are a few of the accommodations we use.

 

Hailey’s Medical Story

 

Hailey is 8 years old. She became a part of our family through the miracle of Adoption January 16, 2009. She had a very difficult life filled with more obstacles than most adults could handle, before God brought her to us. I have seen Hailey overcome and fight through major issues. I have seen her change and grow. She is a very optimistic child and takes life as it comes. She truly takes the lemons life hands her and makes Lemonade. Life has handed her more than one medical issue, but she has never let that get her down.

 
Eyesight
Hailey was born with an Astigmatism, Amblyopia, Hyperopia (Farsightedness), and poor eyesight in both eyes. Unfortunately, nothing was done to help with these issues until Hailey turned 4 years old. Hailey wore an eye patch full time for one year. She is no longer patching, but still struggles with her eyesight.

ADHD
Hailey was diagnosed with ADHD spring of 2008. There were several things that lead to this diagnoses including; Inability to sit still, Lack of impulse control, overly friendly, Lack of social skills, and Extreme frustration. At the time she was attending day care and she had a lot of problems there. She began seeing a therapist for some other things and then she was diagnosed.

 
Reactive Attachment Disorder
Hailey has recently been diagnosed with RAD. We have not done any formal treatment of this as of yet. I think just providing a stable environment has helped the most.

Chiari Malformation & Syringomyelia
On 9/22/09 Hailey passed out and it appeared that she was having a seizure. I took her to her pediatricians who referred her to a neurologist. We had an EEG done and then had an MRI done. The MRI showed Chiari 1 Malformation with Tonsils protruding 10mm. She then had a full spine MRI done that showed a Syrinx from T5-T7. Hailey's headaches became a real battle for her, and after seeing a Neurosurgeon at Vanderbilt, we decided to proceed with Decompression surgery. Her surgery was performed on June 1, 2010. About 6 days after the surgery Hailey began running a fever, Mother's intuition had me take her to the local children's Hospital ER. We found out there that she had Meningitis. After 5 more brain surgeries, and a month stay at the hospital, we were finally able to bring her home. She is doing really well. As of now we will have her scanned every 6 months, and treat symptoms as they come.

How to tell the difference in normal behavior, and ADHD

I was recently asked by a parent of an ADHD child, how I weed through Hailey’s behaviors to pinpoint AHDH. That is often a confusing thing for parents to do. Some of the things that ADHD children struggle with may also be a struggle for other children. It is true that gifted children may also act out at school, some children are very hyper, some children talk all of the time, and some children have behavior problems related to poor parenting or stubborn personalities. That is what make’s the battle for ADHD to be recognized by other parents so hard. It is hard at times to even describe what makes the behaviors so different. I am in no way an expert and I can only give my point of view from observing Hailey. Because there are so many things that ADHD children struggle with I will only address Four of them. These are the ones I here the most backtalk (good and bad) about. I hope this helps someone.
• Hyper Activity- Being hyper is not so much a concern for us, as some kids are hyper with or without ADHD. The problem comes from Hailey not being able to stop. She has what I call jumping fits. If we try to get her to slow down she will start to jump. She jumps in one spot. We can sit her down, but her legs are still jumping. So the difference for us in normal hyper activity, and ADHD hyper activity is the ability of the child to gain control and slow down.

• Disobedience- There are days when I would say that Hailey being disobedient is no different than any other child, and other days when I know that it is ADHD. I can tell because I can visually see how hard Hailey is working at being obedient. You can see how frustrated she is with herself when she “messes up”, and she will even show great remorse and try to make it right. That is when I know it’s ADHD. The other times she is just plain old defiant, and you can see it all over her.

• Talking- It is a well know fact that girls like to talk. That is normal and perfectly acceptable. However, when ADHD comes into play the talking is taken to a whole new level. What she has to say is more important than anything else. She is often so eager to talk that she will be talking all day even if no one is listening. She will say the same things over and over just to have something to say. She will ask questions just so she can answer them and be talking. On the days I like to call, “Talking Days”, Hailey will give us a play by play of her every move. There are other days that she just has a lot to say like most girls.

• Impulse Control- This is such a tricky one, and always has been for us. We were unable to tell the difference in how ADHD affected her impulse control when we started medication. I think the best way to describe it is that she has an inability to think before she acts. Even when you try to help her think it through it is very difficult for her. The medication does help, and she can rationally tell you why she should or should not do something. That doesn’t mean that she always makes the right choice while on medication, just like I don’t always make the right choice even though I can rationally think through what I am about to do.

Wild Child

Hailey's meds stopped working. I felt so bad for her because it was as if she couldn't even function. She would daze out, her mind was going so fast that she couldn't complete a sentence, she even got to where she couldn't put her clothes on the right way. It was sad really.
We went to the Doctor yesterday, I had been told by her therapist that the Doctor had no intention of changing her meds. I found that to be untrue. He listened to everything I had to say, and even made suggestions. We both felt that maybe Strattera had run it's course, and that it was time to try a stimulant. He also thinks that she may be acting a bit strange due to stress about her surgery. Either way, we are giving Medadate a try. To day will be the first day and I am so nervous.

A Mom’s View of ADHD

I am excited to announce that a bit of Hailey's Story was featured over at
A Mom's View of ADHD. Thank you Penny for giving my the opportunity to provide encouragement to other mom's by sharing a bit of our story.

Getting the help others seem to be getting

Do you ever feel like Doctors or Therapist's don't listen to you? I do. I hear other people talk about all of the things their doctors and therapists are doing for their children and I have to try really hard not to envy them. Sometimes I feel like there must be something wrong with me.

I do study up on my children's health and mental issues, and I don't go into the appointment with no knowledge of the situation. I am usually pretty studied up. Someone once told me that, that could be why they blow me off. But, that should not be the case. Regardless of what I have researched, or if I have a basic knowledge of the situation at hand, the Doctor, Teachers, and Therapists should help my children. I feel like I have to fight for everything for them. It just shouldn't be this hard.

We are moving later this year and I am hoping to start all of their stuff over. A fresh start is what we need. I pray that God would put all of the right people on our paths, so that my kids can finally start getting the help they need, without me having to fight the state tooth and nail.

Disclaimer: Sorry for my mini vent. Dealing with special medical, and mental health needs is harder than anyone could ever imagine unless they have first hand knowledge. It all gets overwhelming for me at times.

Hailey, ADHD, and Accommodations

Teaching an ADHD child has been a challenge for me. Partly because, I myself am a bit scattered at times. But mostly because I am trying to adapt to her learning style, which goes completely against the grain of traditional learning. In my attempt to keep pushing her to learn the traditional way we have come to a stand still. She completely shut down. It was as if she had learned nothing this whole year. Because of the complete frustration this is causing to both Hailey and myself, I am taking a step back to see where things can change.

One of the benefits of Homeschooling is that we have the freedom to do what works. I can adjust and make accommodations as needed without having to have a 504 plan or an IEP. The hard part is the extra time and mental energy it takes to make these accommodations

.
That leads me to my next issue, What accommodations need to be made? I am trying to figure out what accommodations I can make that will benefit us both. Hailey is very smart and is doing work above her grade level. That gives me an advantage in trying out new things because I don't have to worry about her falling behind. Now we just have to try new things and see what works.

We were given the opportunity to review a curriculum that Hailey really likes. We are going to keep using it until the end of the week, then we will evaluate how we liked it and if that is the direction we want to go.

For those of you who either homeschool or have a 504, or IEP what accommodations have been made?

Revision 1/2/2012

We were able to make accommodations that worked wonders with Hailey.  We are still Homeschooling and loving it.