IEP once again

E's IEP meeting went very well. I was super nervous, as I always am going into these, but I really started to lose my nerve when E's therapist texted and said she would have to join the meeting via phone as she was sick in bed with a fever. And of course my husband went back to day shift this week, so he couldn't attend either. I put out my DefCon 5 prayer alert on Facebook and man my people rocked it. I got so many replies with prayers and support, and then private messages and texts and phone calls. This is what Christian community is about, and I definitely felt every word of prayer that was spoken.

The requests we made for better assistive technology for E's dysgraphia got a very positive response. It's still in the red-tape-paperwork-process but they've already gotten him a loaner Chromebook that he's thrilled about.  We also were in disagreement with the school psychologist & speech therapist who don't believe he needs speech pragmatics therapy. I think I made a solid case for why he needs this and why the evaluation they did was faulty, and the E's therapist backed me up on this.

In the meantime, I dropped off E's application to attend our local tech school (next year). I'm praying that he gets in; everyone I've talked to about this believes this would be the best environment for him. When I took him to the open house he LOVED it and was fascinated by all of the computer class options they offer. I love that tech school has come so far from when I was back in high school, and the stigma of it is gone. There's a limited number of seats that our own school district is willing to sponsor, and I'm concerned that his grades will hinder his chances. It's definitely in God's hands!

The New Diagnosis

Many of you know that last winter we had a QEEG done on E. I didn't post the results because I wasn't ready to talk to everyone about it, and also because as E gets older, I want to respect his privacy on social media. However, I try to keep my friend list limited to people that I actually am friends with & want in my life (and not many outsiders read my blog), and as I've joined new Facebook groups & become more involved in a new community, it has become obvious enough that I've gotten several private messages asking me about it. Additionally, if we want to encourage acceptance and understanding, we can't exactly hide in the dark.

E has Asperger's Syndrome. Yes, he still has Attention Deficit. He is also profoundly Dysgraphic. As hard as it was to hear this news, T & I have always suspected that he might be on the Spectrum. We are in the process of seeking new educational assistance for him and appreciate your prayers about this process. Please pray for E too; middle school is hard for everyone. For E it has been a bit brutal.

You can Google Asperger's and you'll find good info about what it is or look back at some of my recent posts about it. What Tom and I want you to know most though, is that E is still E, an amazing kid, incredibly bright, with heart and feelings and the same need for love and acceptance as anyone else. Talking to him and relating to him may seem complicated or intimidating but I promise you that you will love him if you get to know him. He loves insects and Minecraft and Percy Jackson books. He loses himself in video games after a long day at school where he must keep his anxiety & behavior in check. He doesn't like to make eye contact with people he doesn't know. He doesn't like very loud noises. He struggles with organization. He has one friend, a boy he met at our church, who also has Asperger's. E is a smart alec and annoys his sister who yells at him but also would do anything to protect him. He will spend hours putting together a complicated Lego set but usually only for display, not play. He is a black belt in mixed martial arts. He likes fishing and jumping on the trampoline.

Many people celebrate Autism Awareness Month, putting up blue lights and wearing t-shirts with puzzle pieces on them. Awareness of Autism is never a bad thing. But it can't stop there. E had an incident with a classmate last year that occurred mostly because this other student was annoyed and didn't understand that he was just trying to talk to him. I later told the guidance counselor that I knew the student would be disciplined for what he did, but that his punishment didn't interest me. I would much rather the student be educated about Asperger's so that he can have more patience in the future, or at the very least just leave E alone. Tell your kids that if another kid is strange or says the wrong things or seems clueless about social cues, that kid isn't trying to be annoying, he might just be different and that's ok.

I need to say one more thing. Over the years T and I have gotten lots of advice, suggestions, and understanding. Family & friends have loved us, loved E, and prayed for us as we strove to raise our wild child. We are so grateful for this; we are just so thankful for family and friends who love us well. We're happy to answer questions and talk about our experiences in order to educate or encourage others. Unfortunately there have been some along the way who have said things that were at the least not helpful and at the most/worst, very painful. If you have been one of those people and you're realizing it now, please know that it was forgiven a long time ago and we hold no grudges. But I think I need to make it clear that going forward, I'm just not having it. Unless you are E's therapist, case worker, guidance counselor, special education director, instructional assistant or God, then we do not need your input. We already have an entire team of people and unless you have a neuro-atypical child then you cannot truly understand or offer advice. What we need, what we've always needed, is love, prayer, & support. From our hearts, THANK YOU for giving us that.

School's Out!

School is done, praise the Father, Son & Holy Spirit. Was this thee longest school year ever, or what?! My kids are now getting to ages where I can't post details about their personal struggles, but suffice to say that the 2013-14 school year was PAINFUL. My daughter started high school and my oldest son started middle school. I think it's a big adjustment for any kid, but for mine there were other factors in play that made it extremely rough. We all learned a lot about ourselves and God this year, and He was faithful to comfort us, and to put the right people in our lives to help. I am proud of my kids and honestly proud of myself, because the challenges I faced as a mom have definitely tested me in new & painful ways. We can't change or grow without facing pain and trials, and accepting that has kept me sane many a day. I generally loathe summer with its heat and humidity and sunburn and mosquitoes, but the relief I feel at surviving this school year is just overwhelming. God sustains us, He provides, I was never alone. He always sent the right people to me, friends who pray, who show up at your door in your hour of need, who pray for your kids, who offer help & compassion. God is good.

Long Pregnancies

Long pregnancies linked to behavioral problems in toddlers

Children born after a longer-than-normal pregnancy are at increased risk for behavioral and emotional problems, a new study suggests.

The study found that attention-deficit hyperactivity disorder (ADHD) is an especially common problem among children who were born post-term, defined as birth after a pregnancy of 42 weeks.

My son was born at 42 weeks gestation. I had been induced with my first child and had a horrible experience, so I was determined not to have to go through that again. But as the days ticked by, E remained unwilling to make his appearance.  I had non-stress tests done by my doctor who was certain that he would 'need' to be induced, which I passed with more than flying colors. I was told that by 42 weeks they would 'have to' induce me. I was told about how the placenta would deteriorate, etc, although I was never swayed that something magically happened at exactly 40 weeks for this to occur. At 42 weeks I went in for the dreaded induction, and was pleased to have a much better experience this second go round. E was born with excellent Apgar scores, eight and a half pounds and took to nursing well.

There needs to be more research, and studies can be wrong. I should also say that in the support group where I originally heard about this study, there were plenty of parents speaking up to say that their ADHD child had come early or on time, and there were very few of us saying that our child had come late. We are only a small sample of ADHD parents so I'm not suggesting that this disproves the study, but just that it doesn't hold true for everyone. I do find this hard to believe because they can't point to why the two week difference would suddenly 'cause' ADHD, and also because I'm a born skeptic. I've also heard of studies that showed that premature birth led to ADHD, so maybe they just can't make up their minds.

I am choosing not to swaddle myself in guilt about this. I made the best decision that I could, and made sure my baby was healthy and safe before choosing to wait the extra time. I hope that other parents will give themselves the benefit of the doubt as well.

Overmedicated

I often hear people say that they think that there are too many kids on medication these days; that parents are too quick to medicate or use medication as a cop-out. This may well be true for some parents, but I have to tell you that there are a lot of us that this isn't true for. We sought a diagnosis for many years, and didn't choose to medicate our son for a long time after that. We considered the options, the side-effects, the long-term studies about the effectiveness and so on.

The evidence that medication was the right choice for our son is evident in glowing teacher reports about the complete turn-around in his behavior. He still struggles with many things, but it's much better than it used to be. If that's not enough evidence, let me tell you why almost no parent would put their child on an ADHD medication unless they really felt they had to: it's a giant pain in the neck.

ADHD medications are stimulants, and as such, are controlled substances. This means that they cannot have refills, cannot be called in or digitally sent in, and cannot be filled early.

Every 30 days I call the doctor, wade through their menus and then leave a detailed message with a receptionist asking for the doctor to write a new prescription. I ask them to call me when it's ready; in the two years my son has taken medication, they have called me exactly twice. So I usually wait a few days, then call to be sure it's ready. (The one time I showed up without calling first, it wasn't ready. I was given an attitude and asked if anyone had called me to tell me it was ready. I said no, and informed Little Miss Attitude that no one EVER called me to tell me when it was ready.) When I get to the office I tell them I'm there to pick up a prescription, they ask for the name. I tell them, and then tell them it's in 'the back', because there are two locations that they keep the envelopes, and E's is always in the second one that they check.
I always check it before I leave the office, but thankfully it's never been wrong. I then do the usual trip to the pharmacy. If I am too early, they will not fill it. And by 'early' I mean more than a day before he runs out. For example, I tried to fill it today but they can't let me have it until Thursday, which is the day he takes the last pill from the previous prescription.

If I were planning a vacation, I would need to make sure the dates were not around the time of month when E's medication runs out. Because by law the prescription cannot be filled early, I would not be able to get it ahead of time before we left. So yes, I have to plan any trips around my son's medication.

Some might think that it's not a big deal since I only have to do this once a month. But it's funny how quickly it always sneaks up on you and 30 days isn't that long.

This all sounds fun, doesn't it? I'm not saying that over-medication doesn't happen. I'm just asking to be given the benefit of the doubt, and for people to consider that it's not as simple as they think.

Klepto

We've always had problems with E taking things that don't belong to him. We have a routine of checking his pockets whenever we leave someone's house. We saw a psychologist a while ago who suggested we have a pre-visit routine of reminding E of the importance of not taking things that don't belong to him, and giving him encouragement, etc. It's not as bad as it used to be and I do think he'll continue to outgrow it as he matures. I follow Kirk Martin on Facebook and this recent post spoke to me. (I had the same response as Vickie.)

The ADHD Update

I checked some books out of the library on ADHD recently, and found some good stuff to share. Now of course half the books they have are completely out of date, and some are just ridiculously out of touch with reality. But I found one in an easy-reader style called The ADHD Update by Alvin & Virginia Silverstein & Laura Silverstein Nunn.

Is ADHD Overdiagnosed?
In the United States, ADHD has become so common that many people think the condition is being overdiagnosed. Medical experts disagree. They say that because scientists have learned a lot about ADHD in recent years, doctors are now better able to identify it. While some cases may be misdiagnosed, many cases actually go undiagnosed. People who have ADD - without the hyperactivity - often go unnoticed because they are quietly daydreaming in the classroom.

I've been told that we should modify E's diet in order to 'cure' him or help with symptoms. I respect that certain foods can cause unwanted symptoms in some people, but I grow weary of being told that I should eliminate sugar or food dyes or gluten as a cure for my son's behavior. Another quote from the book gave me backing to what I already knew:

The National Institute of Mental Health (NIMH) conducted a number of independent studies on the effect of a restricted diet on hyperactivity. In 1982, the NIMH announced that such a diet helped only about 5% of hyperactive children - mostly young children with food allergies.

I find it a bit insulting, like you would tell any other parent of a special needs child that they could fix the problem if only they would stop feeding them such a horrible diet already. Like I'm stuffing him with Slurpees and Pop Rocks all day. Shut up people, and let me parent my own kid.

Great picture here of what it's like to have ADHD:
If you don't have ADHD, try to imagine what it feels like. First, turn on the tv and the radio. Then ask a friend to talk to you. While all this is going on, sit down and try to do your homework. Can you tune out all the distractions and do your homework? Can you talk to your friend without paying attention to the tv or radio? Some people with ADHD have trouble sorting out the many sounds, sights, and thoughts that demand attention. They do not know how to focus on just one thing at at time and tune out the rest. One person with ADHD described how it felt when he tried to do something as simple as read a book: "My thoughts raced round and round in my head. It's like my mind was a pinball machine with five or six balls smashing into each other."

I really appreciated this book, and hope that others might find the above helpful too. We may not have awareness magnets on our cars just yet, but my goal is make people aware of what this disorder is really all about, and how to understand those who have it, rather than judging them.

Easy to Love

After a particularly rough morning with E, this really lightened my heart when it came up in my Facebook news feed:

The kids had a four day weekend for Easter, and this is always the kiss of death for E. He does not deal with change well, nor does he transition well back into routine. He cried, argued and carried on all morning. He kept asking why he even has to go to school, and then made his case for taking Amy (the hamster) to school with him. He even carried her cage to the door. I had to take her from him and put her back, try not to lose my patience with him and get him even more upset before I had to drop him off. I emailed his teacher and guidance counselor to give them a heads up. No phone calls yet, so I'm praying that his day is going okay.
I had a meeting with our lead pastor this morning and he mentioned the book, Shepherding a Child's Heart. I have a long list of books I want to read, but I may move this one to the front of the list if it seems like it could help E survive to adulthood.

UPDATE: The school never called, and I found myself checking my phone all day to see if I had missed their call. When I picked E up from school he was in a good mood. I asked him how his day was, and he said that it had started out bad, but that he had turned it around. I was so proud of him, that I un-grounded him. I want to reinforce how important it is that you can always start over. This was big for him, and I'm so pleased!

This & That

3 Common Traits of Youth Who Don't Leave the Church - This is something I think about a lot, since I was one of those kids who walked away from the church when I went to college. I appreciate any insight into what keeps kids grounded in their faith when they leave home.

10 Things I Want to Tell Teenage Girls - All very true and funny!

Multiple Forms of ADHD? - "Investigators believe ADHD symptoms may actually represent an entire family of disorders, similar to the classification of various subtypes of cancer."  I don't want to sound rude, but the words, "WELL DUH" came out of my mouth upon reading that. Sorry science guys, no offense meant, but it's just nice to hear that research supports what moms & dads of ADHD kids have already known for years.

This & That

ADHD and ODD: Parenting Your Defiant Child - This is interesting to me, because I occasionally see the ODD behavior in E. It's usually in the evening, when meds are out of his system and he gets really wound up. He isn't hugely defiant, but he will be obnoxious and annoy his siblings on purpose. I don't know that this is real ODD behavior though, because it also seems like normal 10 year old boy stuff.



A Potential Natural Treatment  for Attention-Deficit/Hyperactivity Disorder:  Evidence From a National  Study - I'm printing this to go in the notebook I keep of E's records and stuff. Tom and I say all the time that we wish we could be raising E in the country. It's an out-of-reach dream, but this piece is encouraging me to find ways to fit it into our suburban life somehow.

Bunny Chow - This stuff is evil. Do not make it. You have been warned.

Tenth Birthday

Disclaimer: I'm aware that I probably don't have a Christian attitude about this topic. I don't care. I have had enough of politically correct nonsense.

E turned 10 this week. Are we really more than halfway done raising him? That doesn't seem realistic, ha!

We were told at the beginning of the school year that the 4th grade teachers would like it if we sent in a book for the class library in place of cupcakes or some other birthday treat. The reason given was that they have so many students with food allergies. And the unspoken reason is that you shouldn't exclude anyone in a celebration. They don't want you sending in birthday invitations to the class either, unless every student is being invited.
I love his teachers, but I have a problem with this. First, because I think it's silly and unrealistic to teach children that they won't ever be left out, or that no one is going to hurt their feelings by excluding them. I don't throw a tantrum every time I go to a party or wedding and everyone gets to drink but me. Second, let's call a spade a spade, shall we? My son gets excluded from everything. None of these kids are inviting him to their house or their birthday parties. So I'm not going to feel bad for one minute if one of them doesn't get to eat some of the birthday treats that my son brings to school that day. I sent in cookies with no nuts, but that's as far as I'm going. My son has been bullied and picked on and excluded and I could care less if your kid doesn't get to eat a treat that day.

So all that crankiness aside, here is what E got for his birthday....

That tiny little creature is a dwarf hamster named Amy, and we are all in love! E was sitting on the couch opening his new Lego Ninjago set, and Tom came to him and said to put it down for a second. He did, and then Tom said, "Hold this", and handed him the hamster. He nearly dropped her in surprise, and his reaction was so precious. I asked him what he thought after a minute, and he could barely get out the words, "I love it". (Yes, I cried. Shut up.)

Blog Traffic

Last week I pinned (on Pinterest, for those of you not yet familiar) the blog post that I wrote about my son and ADHD: 13 Things my ADHD Child Wishes You Knew. I hoped that others might find it encouraging or informative.  This morning I checked my blog traffic and was stunned:

I also have several comments from people on the Pinterest page itself, all of them thankful or encouraging. I am truly in awe that there has been such a response to that post. It's very humbling and I thank you all. I'm especially thankful for those who are in the same boat as me, because we need each other's support to raise our ADHD kids.

What I Actually Do

Have you seen these? They've been very popular on Facebook lately, as everyone jumps on board to describe who they are too. (Sorry it overlaps the sidebar, but if I made it any smaller you wouldn't be able to read it.)
I sent this one to my friend Laura, who has triplets:

And all my church friends are enjoying this one....





But this one is definitely my favorite....

ADHD sucks

Remember those 'behold the power of cheese' ads from a few years ago? Picture what people did in those commercials to get the cheese, and you will have a picture of how E feels about fried shrimp. He has now had two complete meltdowns over fried shrimp. Once, at IHOP because they didn't have them. (He had them there once before when they were on the Specials menu.) Then again today, when they ran out of popcorn shrimp in the school cafeteria. I had a conference call with him, the school nurse, and guidance counselor because he was hysterical about not getting any shrimp. He kept sobbing that he just wanted to come home. I ended up going to get him fast food, which I gave to the counselor in the office without him seeing me. We agreed this was a one time only food delivery, but we're hoping that it will calm him down to the point that maybe he will tell her what is really going on with him. He's told me 2 or 3 times this week that he doesn't want to go to school anymore.

I'm pretty sure I'm just going to let him live with me until he's 47, because I swear I am making zero progress in turning this kid into an adult. Part of ADHD is difficulty in modulating emotions and problems dealing with disappointment. I have a feeling that counseling is in our future.

If anyone needs me I'll be hiding under my bed.

This & That

An Apology From Your Child's Former Teacher - This was written for parents of autistic children, but I can really appreciate it from our perspective as well. The 'Binder of Epic Proportions' statement caused me to literally laugh and cry at the same time. We have one of those binders. ♥  Thanks to my friend Julie for sending this my way.

Social Thinking - I just came across this site the other day and have found it incredibly helpful already. It's for parents of kids with autism as well as those with ADHD. I'm trying out the chart that Michelle blogged about, where you have the child list their strengths and weaknesses.

More Awareness Week

ADHD Awareness Week

Random

I saw a convertible Smart Car on the road this morning. I was actually afraid for the little guy in traffic. I felt like I was watching a preschooler cross a highway alone.

My four year old, who cannot read, can use the Wii like a pro, navigating menus and playing complicated games with no help. Yet he somehow expects me to believe that I need to brush his teeth for him because he can't do it.

E has his first real friend. He's had some kids before that he played with, but nothing that could be called a friendship. There is a boy from our church who has Asperger's that we have had over our house a few times. They are like peas in a pod! They get along really well, I guess because they have some of the same quirks and both share a love of video games. They have been on the phone the last few nights playing Roblox together.  Last week at Stockade (Awana) E fell during a game and hurt his arm. Z stayed with him as he got ice and a band-aid. When a leader said Z could go back to the group while he took care of E, Z refused saying that E was his best friend and he would stay with him. I cried when they told me that.

Teacher Letter

{TC eating a s'more on a stick, our new favorite treat.}

Tomorrow is the first day of school for my oldest two, and I just finished emailing E's new teacher. I am already very pleased that he is sound asleep, as last year he missed the first day after staying awake all night. A and I spent the afternoon finishing up what we weren't able to accomplish during the hurricane weekend (which I will blog about tomorrow). She now has new shoes, freshly cut hair and new earrings and I am at the top of the mother-daughter food chain. Wait, no, that sounds like I may eat her later. I just mean that she thinks I'm awesome.

TC doesn't start preschool for a few weeks, so I'm looking forward to some extra one-on-one time with him. He is such a super love bug right now that I could just eat - wait. Seriously, what is wrong with me, maybe I need a snack. Anyhow, he must tell me he loves me about seven times an hour. *swoon*

Weight Watchers is going well and I got some breathing room in a pair of jeans today. And speaking of jeans, hooray for the cool temps we got today! I do so wish that they would stay, although I know it's too early for that to happen.

So here's the letter. I liked this teacher when A had her, and my prayer has been that E would get the teacher that would be the best fit for him. He's been medicated for over a year now, and I'm really looking forward to seeing his growth as a student. The changes last year were amazing.

---------------------------------------------------------------------------------
Mrs. B,
I wanted to send a letter to you to say hello and reintroduce myself and my son. You may remember that you had my daughter A a few years ago. My name is Shay and my son E will be in your class this year. We’re excited about 4th grade and looking forward to an enjoyable year.
E is bright and inquisitive, and loves to talk in detail about subjects that interest him. He has an amazing memory. He lives with me and his father, along with two siblings and various pets. He loves computer games and is an excellent problem solver. He loves to be a helper and being given small tasks.
E has Attention Deficit Hyperactivity Disorder, commonly called ADHD. He takes a daily medication for this that helps him enormously. Still, you will see the disorder and I wanted to give you some information that may be helpful.
E can at times have great difficulty remaining seated or need to be given multi-step directions more than once.
        Behavior charts, where E has to be accountable (with his participation in marking them) seem to work well for him. In the past his day has been broken down into 30 minute increments, with certain requirements for that time. Examples would be staying in seat, following directions, completing assignments, etc. This is of course just a suggestion, and you may find another approach more suitable.
E is a story-teller, and loves to tell tales in great detail. Sometimes you will find these are not true. We have been working on teaching him that it’s ok to be creative in story-telling, but that he cannot portray wild stories as reality. Mrs. KB has experienced this several times.
If E does not complete work during classroom time, we have found it ineffective to have him kept inside at recess, or sent to do the work with Mrs. KB or Mrs. O. E loves one-on-one time with adults as his captive audience, so this is more like a reward for him. Feel free to send uncompleted work home with him and we can work on it with him, or to handle it in another way of your choosing.
E does not make friends easily. He wants playmates, but frequently will talk another child to death and not realize that he isn't really having an interaction. He has participated in a social group with Mrs. O in the past.
E has good and bad days just like any other child. He sometimes will only need redirected once to stay on task, while other days may need multiple reminders.  I know that we are of course quite biased, but he really is an amazing young man.
My email address is...  My home phone is.... and my cell phone is... Please feel free to contact me at any time; I am at your disposal.

Many thanks,
Shay

ADHD

My friend Theresa has a great post up about ADHD, and her family's struggle to educate her daughter's teachers about this disorder. Lots of great insight into what our families go through.

ADD/ADHD Information