Salsa ADHD style

Ok, so this is what ADHD looks like in our house today. My 11 year old (adhd) comes home from school with a random kid I have never met (or even heard of) before. They proceed to kind of "collect" kids from around the neighborhood to go to the store to buy ingredients for salsa. They come home and I am making dinner so I tell him they can't make salsa in the kitchen right now. Later as I am putting the little kids to bed I see a huge tarp on the floor in his bedroom with salsa ingredients all over the place (on the floor!), in various stages of being cut up cut up (onions, tomatoes, peppers, etc.) There is also salt all over the place. Mind you, only some of the ingredients are cut up, others are randomly on the floor in one piece. I yell "What is the deal in your room?!" and the repsonse is "Oh yeah, I forgot we were making salsa; we only got halfway done."

My non-ADHD mind wonders the following:
1. Who is this random kid and why do you need 5 kids to go buy salsa ingredients?
2. What makes you think it is OK to make salsa in your bedroom?
3. How can you "forget" you were making salsa?
4. WHY are you making salsa when you don't even like it?

His mind is so active, it wears me out. He starts things and never finishes, he forgets what he was doing and what he was talking about, he has friends I have never heard of and seems surprised I don't know who they are, he gets random ideas in his mind and doesn't think through the consequences of his actions.

He has friends of all makes and models, he thinks outside the box, he is never boring, he is full of energy - both physical and mental, if there is an obstacle in his way, he will find a way around it, nothing is "too hard" if he really wants to do it.
Some people think ADHD is a gift. I agree.

Bullying...

This week I have finally experienced what it is to see your child bullied. I have seen my children left out, ignored, overlooked, and feelings hurt. However, I have never seen any of them actively bullied until this week.

Of course it was Alex who was the victim as my other kids are much more able to stand up for themselves and Ben in particular would be likely to kick someone's ass who gave him a hard time.

Alex insisted on playing lacrosse this spring, I think mostly because Isaac is playing and he really looks up to his older brothers, especially Isaac. So...I was a little leary, lacrosse being a somewhat aggressive, difficult sport and probably not the best choice for a young child with motor planning and sensory processing difficulties. However, he REALLY wanted to play and I didn't want to discourage him. And of course, there are several boys on his team who are the uber-athletic type (even at age 6) and have no patience for kids who are less, ahem, athletic. To be fair, Alex has done better than I anticipated. He certainly does not stand out as the worst kid on the team. However, when kids pick on him, he responds inappropriately which makes him more of a target. More socially aware kids would keep their mouths shut or just tell the kid to shove it. Alex is more likely to lecture or cry. Can you say "Target"????

So at practice, I began to see one child in particular shove Alex or whack him with his lacrosse stick each time he came near. Then I heard the taunts. And the way the other, less dominant kids started staying clear of Alex, not wanting to be associated with him and therefore the target of taunting as well. Alex has taken it pretty well, considering. He says he still likes lacrosse, just not his team.

Now he wants to play tackle football like his older brothers. This may be wrong on my part, but I insisted on soccer, for now (he has played in the past and it is a much more civilized environment for young children). I (not Alex, me!!) need a break from the bullies and their parents who do nothing to stop it. So...this is one of those parenting dilemmas that is really a judgment call and I may be really screwing it up. But I am opting for a peaceful soccer season and putting off football for at least another year. Alex is one of those kids teetering between the special needs world and the "normal kid" one. He doesn't completely fit into either one. So I feel the need to find the soft spots for him for at least a little while longer. Whether this is "right" or "wrong", I don't know, I am going with my gut on this one!!

Birthday Season

Summer is almost here....that means "birthday season" at our house since 3 of my 4 children have summer birthdays. My problem with the older boys' birthday parties has always been keeping the guest list to a manageable size - there's the neighborhood friends, the school friends, the sports team friends. And there's always the conundrum of "If we invite that kid, then we have to invite those two..." You get the idea. Let me put it this way: this past March Isaac had a sleepover with FIFTEEN boys for his 10th birthday and there were still a few kids we kind of overlooked. (Note to self: never have a sleepover with 15 ten-year-old boys again!)

However, this is a problem I would LOVE to have with Alex. Because with him, the problem is exactly the opposite. He is six and has NEVER had a "real" birthday party with friends from school. We have had parties with family members of course, even at Chuck E. Cheese. But he really doesn't have friends like my other kids do. Part of the problem is his August birthday. August is a bad month for birthday parties b/c so many people are out of town or just out of their routines. And you can't send invitations to school. We have had bad luck with Ben's summer parties in the past. And there just aren't any kids who I KNOW will come because he doesn't have a best friend or a reliable friend. The kids in our neighborhood are all older or younger than Alex by at least 3 years so he doesn't have the "instant playdates" my other kids have always had. Because of his social issues, he doesn't make friends easily and doesn't get invited to parties very often himself. I am stressing ALREADY about his birthday this year because he will be SEVEN and he really needs to have a REAL party. I feel so guilty and bad that he hasn't had one yet. I just am at a loss as to how you have a party for a kid who doesn't have friends. This is the saddest part (to me) of having a child with special needs. I can handle the meltdowns, the difficulties with staying still, the language problems, etc. It is watching my child miss out on childhood friendships that is the most heartbreaking part. (Note to self: I need to schedule more playdates for Alex. The few we have had have not gone well...the kid always ends up playing with Sara.)

End of an era

Since our appt with the DAN doctor has confirmed Alex's SPD diagnosis, I have really tried to keep him on a sensory diet. Meaning every day before school (he goes to PM kg) he either has gymnastics or OT and on the days he does not I make sure he swings, jumps on the trampoline, gets to play at a playground, or we walk to school. In addition, he does Therapeutic Listening every day. He is a sensory seeker so he needs this input EVERY. DAY. If he doesn't get the input he is generally a mess at school and at home and does his sensory seeking jumping which looks pretty similar to autistic stimming.

To be honest, I am kind of sick of making sure he gets his input every day. I am on constant alert - did we do enough input today? And I am wondering what will happen next year when he goes to 1st grade and doesn't have all morning to get in his sensory stimulation. My fear is he will get it one way or another - either by being disruptive in class or sensory seeking alone at recess or both. I don't know how his sensory needs are going to fit into a day in public school even with an IEP.

Also.....THE CAFETERIA (cue up horror movie music)is bound to cause problems for him. Although mostly a sensory seeker, Alex is an avoider when it comes to smells. He is a kid who can't tolerate the smell in IHOP (which I think smells pretty good...hello? pancakes, what's not to like?!) The elementary school cafeteria is noxious to even NT kids' noses. I am not sure how he will handle it. I can't imagine he will make a lot of friends by gagging and dry heaving at the table.

Alas, his days as a "little kid" are rapidly coming to a close. He has had 2.5 years of special ed preschool and 2 years of kindergarten. He has come a LONG way from that first day I put him on the special ed bus when he was completely non-verbal and did not appear to understand anything that was said to him. I remember that day vividly and how scared I was for him and for me (putting him on a special ed bus made it official - I was the mother of a special needs child!) I cried my heart out that day and I am in awe of my little boy and how much progress he has made. He has worked harder than any young child should have to.

Next year he will be on his own more than ever. I meet with his special ed teacher next month and I will share my concerns. Hopefully, we can come up with some things to try. However, this will be a whole new world for him. I am terrified for him and for me again. I am also hopeful that all his hard work has paid off and he will be able to attend first grade with NT kids and thrive.

Random Thoughts

It's Mother's Day and my husband has done a GREAT job of keeping the kids busy and outside to give me some peace and quiet. We live in a very kid-full neighborhood and I asked for just one day if the only kids in the house were mine (no friends over today or kids running through the house, etc) However, what I am finding is that I am bored!! I honestly don't know quite what to do with myself! I did do some reading and that was great! On to some random thoughts from the past few weeks...

Living in Virginia, the news is filled with the story of George Huguely, the UVA lacrosse player who is accused of killing his girlfriend, Yeardley Love, also a lacrosse player at UVA. This story is heartbreaking for so many reasons, most of them obvious. These were two bright, talented students and athletes. UVA is called "the Ivy League of public schools" because it is so hard to get into. Clearly, these two had a lot going for them. It is actually George Huguely who fascinates me. I can't help but wonder if this young man, who went to a DC-area prep school, is unarguably good-looking, and who is a gifted ahtlete, was simply used to always getting his way. And when he didn't, threw a massive adult temper tantrum. I don't know the facts of this case, but I wonder. And the reason I wonder is because we have been having some of that in this house lately too. My older two seem to be throwing some "shit fits" lately which I find alarming. At age 10 and 11, they are far too old. They are not classic temper tantrums but rather a lot of yelling and nastiness with some hitting of walls thrown in for good measure. What happens when it is a girl who pisses them off? Bound to happen...
So we had a long talk about it. We'll see what happens...

Another thought that has been circling in my mind is my 11 year old Ben and ADHD meds. There is a misconception out there that ADHD meds are given to kids to calm them down and keep them under control. This, supposedly, is done for the convenience of the teacher or parent. Why is it that parents who medicate with ADHD meds are painted as overwrought parents who can't control their kids?? This is simply not true in most cases. Ben struggled from kindergarten through 3rd grade with paying attention, getting his work done, making friends, etc. He was simply "out of it" a lot of the time. The teacher would say "line up for art" and he would get his lunch box. He didn't finish tests, kids would talk to him and he was oblivious. It was hard to watch because he is very loving, very smart, very creative and funny. Finally, the summer after 3rd grade we tried some meds with him. It took a while to find the right med at the right dose, but to say he blossomed in 4th grade would be an understatement. He got straight A's, made several new friends, did his homework without drama, and was even recommended for the gifted program. He still had some ADHD symptoms, but they were greatly reduced. He remained on the meds through 5th grade. He was on the meds for HIM, not for us or his teachers. Last summer we made the decision (with his doctor) to stop taking them. He said they made him feel tired and I didn't want him to be on them long-term. Plus, he was doing so well, the doctor wanted to start weaning. So we did and this year in 6th grade he has been off the ADHD meds. As a result, his grades, while still good, have dropped, he seems generally unaware of what is going on in his classes, he is very disorganized, he seems to blurt things out, doing homework is like WWIII, and it is very hard to get him to pay attention when I am talking to him. He is lucky to have a great group of friends and to have a great school but ADHD is a real problem for him and for many other kids. We are considering another go with the meds...

Finally, (and this is just a coincidence, nothing whatsoever to do with the UVA lacrosse murder), I LOVE the game of lacrosse! My 10 year old Isaac is playing this spring for the first time. His football coach suggested he try it because he is fast and aggressive and thought he might like it. Alex is also playing on a non-competetive team for little kids. It is a fast-paced exciting game! Isaac is doing great and is obsessed with his lacrosse stick - taping it, re-stringing it, etc. constantly. I don't know how I have lived in MD and/or VA for close to 20 years and not really been aware of this sport! I hope it will get some good press at some point and not be always associated with George Huguely and the Duke lacrosse team scandal.

Yes, I did it...

.....I took Alex to a DAN! doctor (holds arms over head and ducks).

What is a DAN! doctor? Basically, a doctor who believes autism has a biological cause and can be treated biomedically - with special diets (usually the GF/CF diet), supplements, detoxification, and sometimes even chelation. This is the protocol endorsed by Jenny McCarthy. More info can be found here.

However, I didn't just go to "any" DAN! doctor. (And there are many questionable ones out there; some aren't even real doctors - they are nutritionists, chiropractors, etc.) I went to a developmental pediatrician who went to a real medical school (and a good one at that). She is familiar with autism from her background apart from the DAN! protocol. I had to wait 9 months for the appointment. I was impressed with her answers to my questions and by the questions she asked ME. I am a nurse and told her point blank I was skeptical of the "whole DAN! thing". She said she appreciated that and told me she had once been skeptical of it too and that there are some parts she is still skeptical about. She told me to "have an open mind mind but not so open your brain falls out." Perfect way to put it as far as I am concerened!

I have generally followed sites like this and this because the fact that autism can be treated or even reversed using special diets and supplements is just crazy, right?? I did decide to try the GF/CF diet with Alex last year and honestly didn't see much difference after 9 months. He seemed less out of it but the changes were not worth all the effort this diet requires. So I took him off it and he immediately started drinking tons of milk, specifically Carnation Instant Breakfast. My son turned into a zombie, I am not kidding. I couldn't get his attention, couldn't "reach" him unless I was yelling or tapping him. I took him off just casein (dairy) and he has been more alert ever since. And funny thing...his frequent diarrhea stopped. So we have been casein-free for about a year now. Did it "cure" him? No, but he is more alert and less apt to be in the bathroom with diarrhea and those are GOOD things even if it was achieved in a "wacky" way. I will take it! So, I thought, what if there IS something to this DAN! bullshit?? What if I went to a REAL doctor, a doctor who specializes in pediatrics who just so happens to practice this protocol? What could it hurt other than my wallet? (And God knows we have spent plenty on more conventional therapies like speech, OT, and RDI). I decided to make an appointment figuring I could always cancel it (and sort of assuming I would). Then I read this post by Goodfountain, a blog I have followed for some time. I admire her positive, yet realistic (and often funny) way of describing living with a child on the spectrum and her daughter seems a lot like Alex. Her point that there can be a "Middle Ground" hit home with me immediately. Because that's where I am. I will never consider chelating (in my opinion, that's some crazy shit) and my kids are fully vaccinated although I do forgo any vaccine with Thimerisol and most "optional" vaccines. However, I am willing to keep an open mind with some of this "stuff". Why not? It just may help. And it's not like ANYONE has all the answers, quite the opposite. It is becoming more and more apparent, in fact, that autism, like cancer, may manifest due to many factors. Who's to say nutritional deficiencies and/or difficulties with detoxification have no part in it? Kind of like 2 people who smoke for 30 years - one gets lung cancer at age 40 and one lives to be 90. Every BODY is different.

She did examine Alex in pretty much the same way all the other doctors have examined him but asked me additional questions about diet, rashes, GI symptoms, etc. We talked a while about Alex's propensity to lick metal things like bleachers, railings, etc and the fact that he has swallowed 3 coins. When I went back for the follow-up appointment, she told me she doesn't think Alex has autism or is even on the spectrum. She said she sees him sitting right at the edge of it (could I have picked a better title for my blog!!???) However, if he were to fall off the "fence", she feels he would fall off on the non-autistic side (meaning he does not have HFA, Asperger's or PDD-NOS).

She sees autistic-like symptoms but said he has too many strengths that kids on the spectrum simply do not have. Some examples were appropriate eye contact (although his is diminished, it was very socially appropriate), joint attention ("hey look at this!" said WITH eye contact), ability to transition with no difficulty, good pretend play skills (although generally diminished, he did play really well in her office and showed he is CAPABLE of good pretend play), took part in back and forth communication, displayed a sense of humor - basically she was thrilled to see he made appropriate 6-year-old boy jokes about "poop". She did see a lot of problems with language but felt the problems were not typical of autism, but rather another problem like an expressive language disorder. She saw a lot of sensory seeking and movement, decreased attention, etc.

Other doctors have told me this. The difference is they all diagnosed him with ADHD, which never seemed to fit. And I know many kids on the spectrum are first diagnosed with ADHD. This doctor said she doesn't think it is ADHD (I certainly don't). She thinks he has "significant" sensory processing disorder (sensory seeking), visual processing problems and an expressive/receptive language disorder. She admitted she has never seen a child with his language pattern/difficulty before. If you met Alex, you would notice immediately that his language is just "wrong". You are often left wondering "WHAT??!!" She told me his odd body movements are not true stimming, but are instead sensory seeking movement. I'm not sure of the difference, but whatever. She also noted his nasal stuffiness, dark circles under his eyes, and watery eyes, which quite frankly, he pretty much always has, not just during allergy season. I'm so used to it, I barely notice it anymore. Now I am wondering how I could be so blind!

So...got blood drawn this AM and need to send in some urine. From there, we decide on "treatment". I will never consider chelation, will always vaccinate, will not load him up with a million pills and supplements, but WILL keep an open mind and try what she suggests. I am a "middle-ground" mom.

Notes from DisneyWorld

Just got back from a weeklong trip to Disney World. We have been there several times, although Alex's meltdowns last time (before we really knew anything was "wrong" with him) had me doubting we would ever return.

They do a fantastic job with special needs, by the way. Alex is off milk; we did a trial of the GF/CF diet last year and noticed a difference with casein. At each meal the Chef came out and discussed what he could eat and even made some meals in a different way so he could eat them. They have Toffuti at every restraurant. I know they also have special passes for special needs kids to avoid long lines. Alex is not that severely affected and does not have trouble waiting in lines so we didn't pursue this. However, I have heard they do a really great job in that area.

My only complaint about Disney is some of the other "guests" (Disney's word for customers/visitors). My two youngest (Alex and Sarah) had a few difficult moments (AKA meltdowns). Alex for obvious reasons and Sarah for less obvious reasons although she definitely has some behavior issues that I think are related to her adoption or in this case the hunger she must have experienced in the orphanage. She is very concerned about where her next meal is coming from and gets positively frantic if she feels food is unavailable. Hence, she had a gigantic meltdown on the bus one day when she was hungry and I had no food. I mean, enormous. Screaming she hated me, hitting me, etc. Of course there were numerous gawkers on the bus who just couldn't refrain from staring and whispering behind their hands (like I don't know what they are saying). Looks of utter disgust and out and out staring apparently are completely appropriate. Alex got the same stares/whispers/disapproving glares when he had a meltdown after a long day in the park. (Alex did very well overall - he behaved pretty much typically for most of the trip, I am happy to say, except for a few incidents).

Here's my plea - don't stare or whisper when you see a child having a meltdown. And teach your kids not to stare, point, etc. Meltdowns look like tantrums but are different. You may not be able to tell the difference, but give the kid the benefit of the doubt if you see a child "tantruming". Tantrums are a way for a kid to get his way, a battle of wills. Meltdowns are the result of too much stimulation, or if the child is put into a position he/she is not equipped to deal with. Autism spectrum disorders, sensory processing disorder, ADHD, and adoption-related issues are not visible, but are just as real as cerebral palsy, Down's Syndrome or a broken leg. And it hurts just as much to have people gawking at your kid for something they really can't help. For the record, I am not perfect with this either. I sometimes get super-angry at my kids even when I know they are incapable of controlling themselves and I definitely get embarrassed. And sometimes I look at a kid I don't know and think "what a brat" But then I try to give them the benefit of the doubt. Because you just never know what the whole story may be. I would love to tell these parents with their "perfect" kids that I, too, could pat myself on the back and congratulate myself on how well-behaved my kids are if my kids were all typically-developing kids. My older two kids sometimes get embarrassed by the meltdowns and I don't blame them. But I hope they are also learning not to stare, point, whisper, or judge.