Friday, October 10, 2008

Talked with my son about his ADHD...Celebrating differences

Last night, after many years of prayer, a diagnosis of ADHD was given this week. I talked with my son about his condition. I presented in a way to where he would have answers to why he was struggling and feeling the way he did. To be honest, he looked relieved. So, I was glad to share more about it with him.

During the early years of preschool, Josh would have trouble controlling his moods. He also struggled with not keeping his mind off of something, while trying to complete a task. It could be just one thing that would consume and distract his thoughts for days, weeks that he would dwell on. This also got worse as the years went on. He would also tantrum...for hours...out of character tantrums. Sometimes it went on for 5 hrs. I never gave in to the discipline, I was consistent with him. We did not go past 2 chances. I always tried to avoid spanking, but sometimes I had to, but lots of times it made things worse. Time out didn't work, taking something away didn't work, redirect didn't work, spanking made it worse...he would kick the wall and yell....for hours...he would have a few good days...and a series of bad days. Somedays I would sit beside him while he tantrumed and prayed and kept saying to him that Jesus loves him, I love him.

We chalked it up to the terrible 2's extending a bit.

But, it continued...through age 5. At about 3, I took him to our Dr., and he said Josh was just very strong willed.

For many yrs, from about kindergarden, I saw symptoms that made me think twice, but they were not strong enough at that point to think "ADHD". The teacher would say that Josh would blank out when she asked him questions that she KNEW that he knew to answer. He would sit there purposely with a blank sheet, and not answer the questions...even with the teacher...even when she would TELL him the answer because she knew that he knew the answer. At that time, she thought he was being stubborn, and I kind of did too. We know now this is not the case.

In first grade, he had trouble focusing. He would say, "Mom, I can hear other kids whisper and I can't work". So I discussed this with the teacher, and she assured me that he was fine. She put him in a place in the classroom where he was not as in the middle of other kids. He still could not get his classwork done. He was always bringing his classwork home to finish. In my heart, I wondered again. The teacher kept assuring me he was fine.

Through third grade he would have the same struggles. Each year his struggles seemed to get worse. I noticed it in Math and Reading...even Spelling with coming up with simple sentences. He could not stay on task. Yet, if you spoke it, he would remember it. He could remember entire books that I would read to him. I would have to sit right there with him...most nights until late at night to do just a few pages of homework (mainly in 3rd grade). In first and second grade I expressed my concerns and asked the teachers to please let me know if they saw things getting worse. Josh could somehow hold things together to get through the day. He would seem fine, then at home we dealt with the difficult issues...and the classwork and reading assignments that he could not complete in class.

Getting close to the end of third grade, I noticed Josh's struggles increasing. Now difficulty controlling impulses too. Again, I talked with the teacher during conferences...she felt he was fine. She said Josh is very intelligent and scored high on his tests, he is just being lazy. But I knew he was not lazy, I would have to work with him until 10 pm with simple tasks that I knew that he KNEW how to do. He would sit there and stare blankly at his paper. He was having great difficulty focusing and comprehending. He was bringing home his classwork because he could not finish it due to other things going on around him. So then he had classwork on top of homewook every night...and since the teachers did not see hyperactivity in Josh, they said he was just not doing his work.

Toward the end of his third grade year, my father-in-law (Josh's grandfather) was diagnosed with a brain tumor. He had found out that Christmas. This seemed to add to Josh's stress even more. Josh entered 4th grade, and we were so busy and concerned with what was going on with our GaGa (we lived across the street from them), and Josh got lost in the shuffle of it all. Plus, he was sad, and very much holding it in. David was in divinity school, and I was working full time.

The second half of 4th grade, he began having facial tics. I noticed it, but family only thought it was because he was wearing his hair long. Then, when my father in law passed away, Josh did not cry. I sat with Josh to tell him about his GaGa, he surprised me and just said, "He's in a better place". I told him it was OK to cry, but is wasn't until after we moved away, that he could not sleep and he grieved a lot here.

Before we moved, Josh had developed a vocal tic along with his facial tic. Of course, I was the only one who really noticed it.

After David finished divinity school, we moved to eastern NC. Josh still had both tics. David begin to notice them. While David was in div school for 4 yrs, I did go back to work full time, but when we moved I was able to be home with Jordan and Josh again. I had prayed about home-schooling Jordan and Josh, and decided to take the plunge!

When my sister came to visit us from FL, she noticed Josh's tics. I asked the Dr. about it here, and also did some reading about in the Mayo Clinic journals and both said that those can come and go in children. So I prayed and waiting. Slowly they began to fade. Sometimes during excitable moments or moments of uncertainty, the vocal one would return, then fade again.

Being at home with them again was such a blessing. Before we moved I had been diagnosed with Fibromyalgia...after many years of checking for MS and all kinds of issues going on with me physically, we got answers. The cause is believed to be from my neck injuries as a child. I have instability in C4 and C5 in my neck from an old trauma injury. The spine specialist attributed it to being shaken as a baby/toddler. The injury looked like I had been hit head on by an 80 mile an hour vehicle...and it was a very old injury. Two spine specialists confirmed this. I did not accept the first diagnosis. Then, later, my sister confirmed that I had been shaken.

The way this was found...after Josh was born, I carried my little chubb chubb on me quite a bit. (and I am sooo for baby wearing) One morning I woke up in the early AM and saw a flash of light, right after a pop in my neck...then I could not get out of bed without my husband pulling me out neck went out. All I did was open my eyes to wake up for the day, and turn to roll out of bed. And BAM! It took 6 months of intense P.T. to get through it. After my therapy, I had breast reduction surgery to help alleviate the weight from pulling against my upper neck (I used to be 40 EE). The surgery helped tremendously, and I opted NOT to get the spinal fusion, because I was so young. Once you begin those surgeries, you end up having to get more of them due to the spine stiffing in the upper and lower areas of the spine where the fusion is done...this is what my specialist told me. He did not want to see me get into this kind of surgery so young.

What triggered the symptoms of my Fibro getting much worse for me as an adult, was a fall that I had during our move out of our home in western NC. I fallen hard on my left side, and also broke my thumb at the same time. The jolt did a lot of damage to my system. (my thumb was broken, but I taped up my thumb and kept moving because it was a Sunday and we had to be OUT of our home that day) but later had serious issues to the point where I could not walk or dress myself in the mornings. It was so frustrating and still is at times (God has healed me, but occasionally I deal with symptoms), because simple things like vacuuming, would get me in a state where my rib cage hurt so bad I could not breath. I'd have to stop and go in between simple tasks. Anyway...

All of this was going on. When we got here, physically I was in bad condition. And for those who think this is a weight issue, or a diet issue it is not. For yrs I ate organically, lost a lot of symptoms were still there! There are skinny people, fat people...all kinds with Fibromyalgia issues! One thing that gets to me more than anything is for someone who has NEVER experienced certain issues, come and talk to me as if they are the expert on it. *stepping off soap box*

After the move, I was able to BE with our children. Kind of regroup and put everything into them. My symptoms got better with being at home. Josh's also got better with being with me and out of the classroom setting.

As a new home-school mom, I did my best to study and learn as much as possible, to be the best teacher for them. As Josh's teacher, I began to see his struggles in certain areas more and more. Right in the middle of his lessons, he'd talk about other things that were on his mind. His impulses increased.

Daily we have silent struggles that no one is aware of. Too many to write about.

A few: I would write his assignment on the board...and every day I would have to keep telling him over to write his assignment, while he is sitting right there, "Josh, are you writing?" I'd look up and he would be staring far off...again I'd say, "Josh, look at me...please open your book and write this down, OK buddy?" Not once, but several times in that one moment, with me right in front of him. He has trouble writing, and comprehending what he reads. He does pick up wrong lines of what he is working on quite often. I began to see lots more when we began home-schooling. Many times Josh would sit with a blank page, and I would know this is something simple he could do. Yet, he could not do it. He excels in Math, but struggles with language. Reading is a struggle on his own. I had always read with him as a child every night before bed. So no, it is not due to parenting! I was a preschool teacher, and was attentive to what they needed to know when.

The main concern I kept seeing over and over was focus issues, and extreme negativity about himself, and self control of his emotions.

I couldn't understand what was going on. I'm the kind of mom who loves to build up my children, and remind them what God says about them. Josh struggles with his first response always being negative about himself. "I'm dumb, I'm stupid, I'm a baby". No matter how much I tell him his is NOT these things...This has been the case for many years, and increasingly worse through the years.

Also, he cannot handle a change of plans, or change of rules. No sudden changes, or it throws him off for hours, even days. He has struggled with self loathing, self negative thoughts, and I'd spend hours praying over him, talking with him, reminding him who he is in Christ...night before last this went on three hours. It is hard on him, and I do not mind doing this because I love him so much, and love reminding him who he is in Christ. For every negative comment, I would give truth that God says about him. It just hurts to see your child say horrible things about themselves...heartbreaking. It even hurts Jordan to hear it...she cries about it.

The next day he may be fine and happy...a couple of good days, and several very hard days. No one sees it because he can hold it together for visits and when we are around new things, other people, but then when he can unwind afterwards, he does so in the car or at home.

Josh has difficulty expressing his feelings and understanding simple commands. It has to be broken up in steps for him, and most times recently I have been making lists for him to check off simple tasks because he will get there and can't remember why he went there. Or as soon as he gets to the room, something else will get him off track. I know some kids do this occasionally and from time to time.

Now, I've read and heard comments that ADHD kids can play video games for hours, and thus focus, therefore they must be mis-diagnosed. Just because they have ADHD, does not mean that can't play video games for hours, sports and creative activities for that matter, they can. This is because these are not literature based activities. So to say that a kid is not ADHD because he plays video games, is simply generalizing. Our Dr. encouraged us to use the Wii, in between lessons, to help Josh unwind.

We have to take many breaks during the day with school work, because it gets overwhelming for him. It also gives him a break from the stress because for ADHD, simple copy work can be stressful. Math is difficult. Reading is stressful to them. Writing is especially difficult to them. Not for all kids, every kid is different, but one or more can be extremely challenging. Especially the reading part. Josh can read fluently, but he cannot remember what he read. Most of the time I have to read books to Josh even now, for him to comprehend it. Making simple connections about things is difficult for him. Books on tape have also been suggested for us.

There is so much that I do not understand about ADHD, and for years I have been living with a husband who is ADHD/ with dyslexia (had 2 different batteries of Psychological testings at two different times in his life-his was not diagnosed until college and div school. He struggled all of his life, and was called stupid and lazy...and is one of the most intelligent men I have known) When you call someone this, it really takes a tole on them.

Jenny has talked about it from her perspective on her blog, and yes as she said, there are mis-diagnosis. I can say in our case, it is NOT. For years I've prayed for God to show me how to handle this. To make someone feel off the bat that theirs is a mis-diagnosis, to me is thoughtless really, especially when they are going through the difficult issues and needing answers to HELP their child. EVEN my husband who HAS the condition, and has studied it for counseling purposes, would never dare to tell someone else how to deal with it, or that what they are going through isn't real. EVERY case is sooo different. Certainly someone who does NOT live it, can never fully understand what goes on in the day and the life of someone with ADHD. That is UNLESS one has years of counseling on one counseling experience as a trained professional. Someone may read about it, or have friends with the condition, or hear others story, but it is DIFFERENT thing altogether living it. It is also different for each person. Unless someone is living it, they can not FULLY know what a person goes through.

Recently, Josh got the formal was from a physician who has ADHD herself. We are referred to a psychologist for further testings...for things such as other LD's or Auditory Prossessing issues. The main reason I have NOT pursued getting a firm diagnosis in the past is because I did not want Josh labeled, and I did not want to put him on medications. Also, I was not sure...and everyone kept telling me he was just fine...when I am his mama, and I should have listened to my own about it.

He has the ADHD WITHOUT the hyperactivity, and up until now I had been able to understand how he learns and how to work with him on it. It is getting to the point now where we need a few more professional answers, so we will know how to BETTER help him, in a positive way. It isn't to slap him on drugs (of which I am NOT opposed to...this may be totally necessary in someone else's case), it is so that we can better help Josh learn the way HE learns. This does not make him a problem child, or dumb, it just makes him different. We are all different when it comes down to it. : ) Yet society somehow forces children to do things by a certain deadline or be at a certain level or they think something is really wrong with them. That is when the labeling begins.

We all, especially christians can stand to be a little more tolerant and embrace differences in children, and even adults...myself included here! : )

Since we home-school, we are told that we have to pay for our private testings. Would you please pray that God will make a way. I know He can and will. I've got to make some phone calls...our Dr. said the tests were going to be around $1500. Of which we do not have right now with David doing his chaplain residency, we are trying to get moved to the city where he is doing his residency. I'm hoping and praying that our insurance will help us out, but the Dr. did not think insurance would pay for it. I'm certainly going to try...

Yesterday I was so unsure as whether I should tell Josh. After prayer and some good advise from someone else who had ADHD, including my husband, I sat down with Josh. It is important to be real with a child, because they know when something is going on. I think it was actually a relief for him, because he was beginning to sense for quite some time, "on his own" that he was "different" for a few yrs now and not fitting into society's "norm". His negative self image was due to his condition, NOT because I am a bad parent or because he was "labeled".

I reminded Josh that his differences were also blessings. We can celebrate our differences! That while he may need some different ways of learning, he is bright, and creative. I reminded him of many people in ministry who have ADHD, and who are greatly using their gifts for God's glory. One being his daddy.

Also, I posted the question about ADHD previously. Thank you to all who commented. I do appreciate it so much. When someone is going through things like this, what is SO helpful is just knowing that someone cares, that they are listening, and they are praying. Suggestions are a blessing, but when suggesting goes from "suggestion to forcing one's opinion", it can add to the stress of it all.

Knowing someone who has been through it soooo helps, and how they have adjusted. I'm very thankful for the encouragement of friends, and bloggers, and for those of you who have shared on a personal level about what has worked for you.

Blessings in Jesus name, jenn


Drea said...
This comment has been removed by the author.
Shane said...

I am so glad you found my ADHD & LD Resource Blog too! Thank you for the nice comment you left. :) I can so relate to you and your son's ADHD story. Please know that I'm here to listen if you need an ear. I've been there and done that for 5 1/2 years now. Take care and keep smiling.

Jenn said...

Thank you Shane. This really means so much!

I'm so thankful the Lord led me to your blog. You are a real blessing!


Jenny said...

I'm glad the talk went well! I tagged you if you are interested in doing a short meme. See my last post for details!