Friday, November 5, 2010

Soccer Success

The school year is well underway and Alex is doing very well. His behavior and attention in class have not been an issue, he is doing fairly well academically and on the surface is interacting with the other kids. I say on the surface because if you really examine what he is saying and doing, he is mingling, not fully interacting. He flinches every time a kid comes at him unexpectedly and continues to have difficulty with big groups of kids. He has also started some strange behaviors like washing his face at school and hiding in the bathroom when it is time to get on the bus, even though I have confirmed with Isaac (my 5th grader who is a patrol and very protective of Alex) that no bullying is occurring on the bus.

Still, it is more than I had hoped for. The area where he has actually improved the most is organized sports. I don't care so much about how he is doing with sports, but I will take improvement where ever and whenever it presents itself. He is playing soccer this fall, after a very difficult season of lacrosse where some bullying (as discussed in a previous blog) was evident. When the soccer season started, he was clueless. He knew what team he was on, which was an improvement in and of itself, but that's about all I could say for his soccer skills. However, his improvement has been dramatic. He is now scoring goals at games and at one game was the high-scorer. He feels a part of this team and gets along with the other kids. He really goes after the ball with gusto and his confidence has soared. Except for the fact that the coach does often need to tell him things more than once (since he often doesn't process things the first time), I don't think anyone would know there is something "wrong" with him. In fact, this is the first time he has been on a team that I haven't said anything to the coach about his difficulties. Now, I do notice differences between him and the other kids...he doesn't mix with the other kids as naturally as a neurotypical child would, he takes longer to understand drills and instructions from the coach, he sometimes loses interest and stares off into space or lays on the ground during practices, etc. However, he does not stick out. Other parents have noted how "cute" he is. They think he is funny. There is no bullying. He is accepted. It is a breath of fresh air.

He has already told me that next year he wants to play tackle football, probably the most unforgiving of all youth sports. Good Lord, what do I do??!!

Tuesday, September 21, 2010

The Media and Special Needs

The media often gets blasted for all it does wrong - being too one-sided, only being out for ratings, showing too much sex, etc etc etc (I mean I could go on and on but you get the idea!)

However, this post is about what the media is doing RIGHT. And lately I have to say I have seen some really positive characters and shows about autism and other special needs. When I was growing up I don't remember there being shows with special needs characters. There was a girl with cerebral palsy on Facts of Life but she was only a guest, one of the girls' cousins, and wasn't in many episodes. The first show I can think of a special needs main character was Corky on Life Goes On in the early 1990's who had Downs Syndrome. As I recall they did a good job with his character. Then...nothing much for years that I can think of other than the occasional guest spot for special needs characters.

This season there is Parenthood which (in my opinion) has done a really good job of depicting a child with Asperger's. Max is intelligent, funny and handsome. However, he ignores greetings, obsesses about insects, and has meltdowns when his routine is disrupted or something unexpected happens. He has sensory issues like being completely undone by the bubbling sound from the fish tank in his classroom. He has trouble with sports teams. This show has also done a great job in showing the parents' reaction to the diagnosis and dealing with it on a day to day basis. When Max was diagnosed in the first season (last season) they were devastated and the wife implored the husband "Don't leave me alone with this." It was heartbreaking and very realistic. Then they realized they had work to do to help their son and rallied. This is all very familiar to me.

I also like The Middle's youngest child Brick. He does not have a diagnosis on the show (it is a 1/2 hour sitcom, not a drama) but he is definitely "autistic-like". He is funny and smart and not at all tragic. The mother does a lot of eye-rolling and sighing but accepts her son for who he is. In one episode the parents are intent in having Brick make some friends until they realize he is happy how he is and would rather be reading a book. Again, acceptance.

Finally, on my list is the new MTV (yes, really, MTV!!) show World of Jenks. In each episode, Andrew Jenks spends time with a different interesting person. In the episode "Can't Make Me Be" Jenks moves in with a 20-year old man who has autism named Chad. I think it was really well done. They showed what Chad does on a day to day basis (like going to school) and also showed the broader issues of autism like hyper-sensitivity to smells and sounds. In the final analysis, it showed that Chad really isn't all that different from other young men his age. He likes a lot of the same things, he is able to communicate fairly effectively (dispelling the Rain Man stereotype), and he is a funny and compassionate person. My hope is that many younger people will watch this show (because it is on MTV) and understand that people with autism are not "less" or tragic, but just need some understanding. Jenks demonstrates this well when he takes Chad on a road trip to Manhattan and quickly realizes it is a mistake when Chad is upset by all the horns honking, smells - in short, the total sensory overload. At the end of the show he finds a more appropriate place to road trip with Chad. This is reality TV as it should be. It's hard to believe Andrew Jenks is roughly the same age as the morons on Jersey Shore (which I admit I have watched from time to time - a little escape from reality!).

I have read there is a boy in a wheelchair on Glee and that Sheldon on The Big Bang Theory is a classic Aspie but since I have never seen either of these shows, I can't comment on them.

I'm sure there are other shows and examples, but to be honest I am not a huge TV-watcher so this is all I am aware of now. It's a great start.

Monday, September 6, 2010

Summer's End

School starts tomorrow for my little (and big!) guys. They will be in 7th, 5th, 1st and kindergarten. Alex starting 1st grade, and going to school all day, has me quite nervous but I have been doing my best to "prepare" him all summer. We have kept up with his sensory diet, started taking some supplements recommended by the DAN doctor we went to last spring (not many and they are based on the results of his blood and urine tests), worked on reading and math, and read social stories about the cafeteria, recess, waiting in line, and how to have an appropriate conversation with peers. We have talked about what his "job" is in different situations that will be new to him: in music class, he is expected to sing, in PE he is expected to listen to the "coach" and follow directions, at recess he is expected to find someone to play with and not jump around by himself, etc.

He has been practicing his play skills at the playground where Isaac has football practice. He and Sara play at the playground with each other and with other siblings and random kids who are there while Isaac is at practice.

Here's how you know you have a special needs kid: when your kid says to you "Mom, aren't you proud of me? I played with that kid!! I am doing a great job practicing for recess!" and you, the mom, have never been more proud of this small (HUGE!!) accomplishment other moms take for granted.

Monday, August 2, 2010

Therapy burnout

Alex has been in some sort of therapy since he was 6 months old. It started with PT for torticollis as an infant. He then began speech therapy at 18 months in his at-home early intervention program. I had no idea then just HOW LONG therapy would last. I was so naive, I really thought he would start talking and he would be fine. I had concerns but he was so loving, he smiled, he met his other milestones and I did not lay awake at night worrying. If anything, I thought maybe his IQ was a bit low and that was something that did not upset me terribly.

Here we are a few weeks shy of his 7th birthday and he is still in therapy. He receives OT and speech therapy. Over the years he has also had social skills group and RDI, but both of these were discontinued although we still follow the principles of RDI in our everyday life. However, we do not have the time or money to do EVERYTHING. And in case you are wondering, no, insurance does not cover these therapies. OT was covered for a while but only for a certain number of visits. I guess if you are not "better" in 30 visits, you are SOL.

Lately, I notice Alex resisting therapy. He does NOT want to go! I really can't blame him. Just how long is it supposed to go on? Forever? Because that is likely how long he will have problems with language and sensory processing - forever. Will I be dragging him to OT when he is 12? 15? 20? God, I hope not!!

I am waiting for some sort of "sign" that it is time to end therapy. I don't know what that sign is. Maybe the therapist saying enough is enough, maybe some dramatic breakthrough in language development or sensory processing, maybe a teacher saying "there is nothing wrong with him", maybe a sudden slew of new friends....SOMETHING! I think it is more likely I will need to listen to Alex himself. He is already making it clear he is tired of therapy.

What keeps me going back?? Fear, plain and simple. Fear that he will miss out on some new breakthrough or that stopping will be harmful in some way. Fear that his development will slow down or even stop if we end therapy. In short, he has been in therapy so long, I can't imagine him not going, not working, not being tested regularly, not having these therapists be part of his life.

I have spoken to the speech therapist about some updated testing on his expressive and receptive language "just to see where we are." I also would like to have testing done on his pragmatic speech. Perhaps these results will help me make a decision. The speech therapist is also going to work with him on his very ADHD-like impulsive questioning of strangers: he will ask people things like "Have you ever been to jail?" (of a grungy looking guy at the mall), "Why is your name on your shirt?" (of the janitor at school), "How old are you?" (of a very old man at the grocery store) "What is wrong with your legs?" (of a woman in a wheelchair). He does not go on and on about topics as described of children with Asperger's, but I think that might be preferable to the sometimes embarrassing questions he asks of complete strangers. If the speech therapist is willing to work on this then we can't quit yet....right?

I am full of self-doubt, not wanting to make the wrong decisions when it comes to my children's welfare. I can't help wondering if on this subject, Alex is far wiser than me...

Thursday, July 1, 2010

SPD at the Beach

Last week we went to the beach. Let's jsut say Alex had, ahem, a challenging week. He usually does. The places we stay are too small. There are too many smells. There are too many people. There are no trampolines. There are no swings.

We do go for a walk on the boardwalk in the morning. He goes in the water and plays in the sand, but for whatever reason, it doesn't meet his sensory needs. Most afternoons, I would find him at the top of the beach in the really hot sand where you can't even walk without sandals, laying spread eagle on his belly soaking up the hotness. Just craving that sensory input. "Out of Sync" is just the perfect phrase, really it is!! He does well the day we go on the rides and fun houses with slides, ladders, rope swings, etc because he gets the vestibular and proprioceptive input he needs. That night he is talkative and relaxed.

The last night we were there he had found a piece of scotch tape and put it on his arm. For some reason it gave him comfort. Then if fell off and he lost it. A huge meltdown ensued. Over a piece of tape. This really is not like Alex. I was at the end of my rope and went next door to my parents' condo. At this point I felt like the kid who was losing it and I needed to take solace. It was time to go home.

I read an article recently by an "expert" who claims SPD is not real. I dare him to take Alex to the beach when we go again later this month. He strikes me as one of those experts with either 1. no kids or 2. only NT kids - although to be fair, I really know nothing about him. I did email him about his little article and of course got no response. Big surprise.

Wednesday, June 9, 2010

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.

Thursday, June 3, 2010

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!!

Thursday, May 20, 2010

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.)

Thursday, May 13, 2010

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.

Sunday, May 9, 2010

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.

Friday, April 30, 2010

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.

Wednesday, April 21, 2010

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.

Sunday, March 28, 2010

Documentaries

Something about me...I love documentaries, especially about people. Here are some that I have seen recently.

little man - about a baby born 100 days early and his struggle to survive. Also touches on the ethics of saving a baby born this early. As a mother and nurse, I found it both heartbreaking and hopeful.

Boy Interrupted- A film made by the mother of a young man with bipolar disorder. It gives you a glimpse into life with a CHILD who has bipolar disorder. You will cry.

Autistic-Like: Graham's Story- A film made by the father of a young boy diagnosed very early with autism, who in fact is not autistic. His father comes to believe the therapies recommended are missing the mark. Graham is "autistic-like", a child with sensory processing disorder. This film hits home for me. Alex can best be described as "autistic-like" and in fact HAS been described that way by several professionals.

This is one that hasn't been aired yet but will air on HBO on April 2. I look forward to it. A Mother's Courage: Talking Back to Autism


I think these films are very well done and honor the children they are about.

Monday, March 22, 2010

Some views on adoption

Adoption is something that I have really come to change my mind about as I have become more informed and have come to know my daughter's story. Over the years I have been asked many questions about my daughter's adoption, both online and in real life.

1. Why did you adopt?

Obviously, it was not due to infertility and there isn't one answer, but rather several reasons. One is that I grew up in a small family, with little extended family around. I always envied my friends who had big family get-togethers and holiday meals with cousins, aunts, uncles, etc. I have a wonderful family which may be why I always wished there were more of us! I wanted a large family. I figured there were kids who needed a family, lots of them. Adopting was always something I had in the back of my mind that I would like to do. After having 3 boys, I really liked the idea of adopting a girl. I first became interested in adopting from Russia after watching a Dateline show about the plight of a little girl in an orphanage in Russia and how many kids were in the same situation. From there I did research on Russian adoption and saw there were indeed many children in orphanages in Russia. I was interested in adopting a preschool age child but our agency would not allow us to adopt out of birth order and Alex was only 2. So we brought Sara home when she was 1.5.

2. Why did you adopt internationally? Why not adopt domestically or from foster care?

I had no desire to adopt a domestic newborn baby. I wanted to adopt a child from an orphanage or foster care. However, I was leary of foster care because of the kids eventually leaving. The goal of foster care is return children to their natural family when possible. That is as it should be and I am all for it. However, I was afraid having kids coming and going would be too disruptive to my kids. My first priority had to be them. (Note: My hesitancy with adopting from foster care was based on the experiences of a friend of mine who had kids coming and going even though she was hoping to adopt. If I had to do it again, I would probably look a little closer at this option.)

3. Why was your daughter relinquished?

While I have shared my daughter's story with close family and a few people online who don't know us in adoption discussions, this is HER story and I don't generally share it with others. Let's just say her mother really did not have much of a choice. When your options are survival or possible non-survival, you do what you have to do. The idea that natural mothers always have a choice is false. My daughter's mother didn't really have a true choice and that is the case far more often than most people would like to think.

4. How do you know for sure why your daughter was relinquished? How do you know she was not kidnapped?

We hired a searcher who made face to face contact with my daughter's Russian family. Her mother verified and expanded upon the sketchy information we were given by the adoption agency. We have pictures and video tape of my daughter's family as well as her story as told by her mother (translated, of course, by the searcher).

5. Will you take your daughter back to Russia?

Yes, this is something we plan to do. We can't do it right now and although I know some people don't agree with this, it is our decision when it is the right time to go back to Russia. For better or worse, we have 3 other children and limited resources.

6. Did you know about your son's difficulties when you adopted?

NO! This question has been asked of me by people both IRL and online. I'll be honest, it kind of irks me. I'm not even sure I can articulate why. It feels invasive for some reason. But again, the answer is no. In fact, during our homestudy, the social worker needed to have the pediatrician make a statement on the boys' health and development. There were no huge red flags. Those of you with kids on the spectrum know the difficulties are not always obvious in infancy or even the toddler years. In fact, a recent study done by IAN (Interactive Autism Network affiliated with Kennedy Krieger) found that the average age of diagnosis for PDD-NOS is 3.7 and for Asperger's Syndrome is 7.2. At age 2 we knew that Alex wasn't yet talking, but we weren't overly concerned because our oldest son was a "late talker". Obviously, the fact that we were clueless when Alex was 2 is not unusual.

7. Would you recommend adoption to others?

When we adopted I was unaware of some of the things I know now. I honestly thought we were doing a good thing by adopting a child who was in an orphanage. I also erroneously thought my daughter would not "miss" her family since she had never lived with them. I always assumed she would be curious and want to find them someday but I didn't think she would feel "incomplete" or like she didn't fit in. Of course she is only 5 so I don't really know what her feelings about her adoption will be but I am aware they may be more negative than positive. She is likely to feel a great sense of loss for her family, her culture, her language, etc. This has nothing to do with us "giving her enough love". It would really have nothing to do with us. It is what it is. We cannot replace her original family no matter how good she has it with us. This is what prospective adoptive parents need to understand and it is something I didn't understand before adopting. Now I am not saying she would be better off in an orphanage, I don't believe that. However, there are many loss issues to consider. Adoption, of course, begins with loss. Without the loss of her original family, her adoption would not have taken place. She will need us to be supportive of her feelings, whatever they may be, and to acknowledge them. So...I would say to others thinking of adoption, please do some research. Read "The Primal Wound" by Nancy Verrier. Read some blogs by adoptees and first moms. It can truly be eye-opening. There is a definite negative side to adoption that the agencies will not tell you about.

8. How has your daughter "adjusted"?

For the most part, very well. She has some lingering issues. She is a food hoarder which is not uncommon in post-institutionalized children. She is also hyper-vigilant. This is also common. I have to be extra careful that I am never late picking her up from school and other places and that if I say I am going to be somewhere, that I am there! This is more important for her than for my other kids. Aside from that, she is also a bit delayed academically. I don't know the cause of this except to say that there is nothing "wrong" with her cognitively. She is bright and curious.

9. If you had to do it all over, would you adopt again?

Hmmm....that is a toughie. Knowing what I know now about Alex, probably not. But that is really the same thing as saying, if you knew the challenges Alex would have, would you have had any more kids? The fact is, I can't change the fact that we adopted and can't imagine my life without Sara any more than I can imagine my life without one of the boys. I feel guilt a lot - guilt that I participated in something that may one day cause her real pain (her adoption). And also that I participated in the "industry" of adoption. Because I have come to believe that the industry is corrupt. As long as there is demand for children, agencies will find children, one way or another. And charge high fees for their "services". I think profit should be taken out of adoption altogther. I think more effort should be put into keeping children with their families whenever possible. I also feel guilt similar to what I imagine a family feels when their loved one has received an organ from someone who has died. I imagine they feel tremendous joy for their loved one but a kind of guilt that their good fortune had to come from another family's terrible loss. I know my joy at having my daughter has come from a terrible loss suffered by her Russian family. It was easy for this loss to be kind of vague before we searched for her family. However, the tears in her mother's eyes and the sadness on her face were very real. I know that as the adoptive family, we have all the joy while my daughter and her Russian family experience great loss. That is hard for me to think about. I DON'T KNOW if I would have adopted if I knew then what I know now (even if Alex was NT). I need to take responsibility for our decsion to adopt and find a way to help change the industry for the better.

Wednesday, March 17, 2010

IEP Success

Alex has met ALL his IEP goals before the school year is over. According to his special ed teacher, he is able to stay on task, sit up appropriately at his table (without slumping or fidgeting), complete his work, retell a story, and have on-topic communication with peers and adults with at least 3 back and forth exchanges. In other words, he is doing great!

When I am in his classroom volunteering, which I do once a month, I see him having good days and bad days. On good days, I have gotten to watch him play appropriately with 2 girls at the play kitchen, talk with his table-mates at snack time, contribute appropriately to classroom discussions, and join in with other kids' play durning free time.

Bad days - I have seen him isolate himself by "hiding" behind the giant whiteboard and look at a book while all the other kids are playing together, not be able to keep up with multiple instructions during art projects, stare out the window and at the calendar, and fail to greet peers in line in the morning. The thing I notice most about him that is "different" is that he takes a lot of interest in his surroundings, but not as much in the the other kids as is normal. He seems constantly distracted by "things". First thing in the morning, he goes through his routine, walks around and looks at everything, but doesn't seem all that interested in the other kids. He will respond appropriately if someone speaks to him, but he doesn't usually initiate conversation. He sometimes seems out of it.

He is making progress - he is doing well academically, he loves school, his behavior is good, his teachers really like him. However, he still has some work to do!

Kindergarten is only 3 hours and we do a lot of sensory input in the AM before he goes: OT, gymnastics, therapeutic listening, swinging, trampoline, jump rope, etc. I don't know how he will do next year when he is there all day. I think he will need sensory breaks.

But back to the good news!! He met all his goals!! He only has one goal for the rest of the year. It is that he will stay on task and complete work, with no reminders, 9 out of 10 times. That, to me, sounds like what any "normal" kid would be expected to accomplish. We will be adding social goals regarding lunch and recess next year when it is relevant. My fear is he will spend recess by himself getting his sensory input. I need to ensure they are providing that so he can play with the other kids at recess. I am also a little concerned with the smells in the cafeteria. It can be a little overwhelming to my nose at times and he has no tolerance for smells. I don't know how or even if they can address that in an IEP but it is definitely going to make socializing at lunchtime a challenge if he is gagging and dry heaving. I hope his class sits at the table furthest from the food...

Wednesday, March 10, 2010

Autism Acceptance

There is a lot out there on the subject of "autism acceptance". There is even something called the Autism Acceptance Project. And NPR did this story on autism acceptance. I think these types of sites and initiatives are great. I am all for autism acceptance, although maybe not in the way some people mean. What does autism acceptance mean? That is the tricky question.


When I first heard the term, I thought it referred to accepting the fact that your child (or you) have autism or are on the autism spectrum. There are certainly a lot of people in denial, as is common with potentially devastating information. It is a form of self-preservation. For me, personally, this has been quite tricky since Alex is one of those kids who gets a different diagnosis every time we go somewhere for an opinion or evaluation. He has had 3 formal evals by qualified professionals. One diagnosed high functioning autism (possibly Asperger's), one diagnosed ADHD with possible Sensory Processing Disorder (confirmed by an OT) and one diagnosed ADHD with Expressive Language Disorder and sensory seeking behaviors noted. So...clearly "something" going on but not so clear exactly "what". So....I don't want to go around saying my child is autistic if he is not but I also recognize he has many "spectrummy" qualities - he is on the edge of the spectrum somewhere, no doubt. I accept that and even go so far to say he is "on the spectrum" because I think he is. Autism acceptance, right?





Actually, autism acceptance usually refers to accepting autism as a "difference", often referred to as "neurodiversity". Many people think autism (especially Asperger's) should not be thought of as a disorder. Temple Grandin, a prominent person with autism has said she thinks autism is a gift. She thinks she would not have accomplished what she has without it. She is very likely right. I think she is incredible and I'm glad young people with ASDs have her to look up to. No doubt she has postively influenced many parents and children affected by autism spectrum disorders. However, I just don't know how I feel about autism being a gift. I am glad she feels that way and she may even be right. I will admit I wish my son didn't have this "gift". It is one I wish we could return.



What does autism acceptance mean to me? To me, personally, it means accepting my son's limitations and gifts, the same as I would with my 3 NT children. We all have our strengths and weaknesses. One of my most important jobs as a mother is to nurture their gifts and strengths, help them develop areas that need work, and accept that they are not perfect. So, while I accept that Alex has limitations that my other kids don't have, I also believe that some of these limitations are due to a DISORDER. Because I do believe that autism, Asperger's, etc are disorders. Hence the term autism spectrum DISORDER. I don't think it is merely a different way of thinking or being. I really believe there is something "wrong". And if I had the opportunity to take it away, I would. I think Alex would still be Alex without the ASD. I don't think it defines who he is. I respect parents who claim they would not change a thing and believe that the ASD makes their child who they are. It is valid point of view. I just am not there. If I could take away my son's difficulties with making friends, complex motor skills, language, and sensory integration, believe me I would in a second. Because I think life is going to be harder for him than it is for my other kids - heck, it already is. Who wants that for their kid? Who wants to watch their kid struggle? My son is a very happy boy. I hope and pray that he continues to be.



Parents of children with other disorders don't go around talking about acceptance. As far as I know there isn't discussion of acceptance of other disorders as simply a variation of normal. Why is it the case with autism? I know most of the discussion centers around high functioning individuals and not children who are severely affected, but even mildly affected kids can have serious problems functioning in the world. And most kids with ASD are mildly/moderately affected. The reason these discussions bother me is if HFA/Asperger's are accepted as variations of normal, there is no incentive for research into a cure or REAL treatment for autism. And this research is woefully underfunded now.



Then, of course, there is the other end of the spectrum (pun intended) - those parents who literally risk their children's life trying to "cure" autism. I will leave that discussion for another post.

Monday, March 1, 2010

New Blog

I've started a new blog (obviously). This one will be anonymous and comments monitored. It's a shame I have to do this, but I learned my lesson!! As you can see from the title, this one will be much like the last, focusing on my son who has an alphabet soup of diagnoses. One of my biggest frustrations is the fact that we have NO clear-cut diagnosis, but as I read other blogs and forums, I realize my son is not the only one who does not "fit" neatly into any diagnostic box. The diagnoses he has been given, by different evaluators and therapists are as follows: ADHD, "possible" Asperger's, HFA, PDD-NOS, Sensory Processing Disorder, dyspraxia, Expressive Language Disorder, and "possible" dyslexia. Of course he doesn't have ALL of these, but he does have symptoms of all of them. The problem is so many symptoms overlap it is hard to weed out what the core problem is. Some days I think it doesn't matter, as long as I am treating the symptoms. Other days, I think it does because I wonder if we should be pursuing a more targeted treatment plan. Right now my son receives OT and Speech Therapy, and that's it. He has an IEP at school that focuses on communication and paying attention/staying on task/completing work. We follow a sensory diet at home which includes lots of jumping, brushing, and Therapeutic Listening. I have come to believe most of my son's issues are sensory in nature - he is both sensory seeking and dyspraxic. Therefore, for now, most of our interventions focus on sensory integration.

For the record, I have 4 children. My oldest is Ben (for the purposes of this blog anyway since names are now anonymous). He is 11 and has ADHD but no other diagnoses and has managed fairly well. He is very creative and intelligent. He likes music (guitar specifically) and sports (football specifically). He is hilarious and sarcastic - love that!!!!
Next is Isaac who is 10. He is completely NT, a great athlete and a "leader". He is my "easy" kid.
Next is Alex, he of the many diagnoses. He is 6. He is exceptionally sweet (don't believe for one second that kids on the spectrum do not show or express love. This boy tells me he loves me and gives me kisses every day, several times a day.) He is a smart kid who has a lot of trouble expressing himself, getting himself "together" and entertaining himself constructively. I love him the way he is more than life itself but that doesn't mean I wouldn't take away his problems if I could.
And last but certainly not least is Sara, age 5. She is also very sweet and loving. She is outgoing and friendly and always a bright spot in my day. She is adopted from Russia and there will be some blogging about adoption here as well. She is smart as a whip but struggles with language-based academics.

I have followed many blogs for quite a while, both about the autism spectrum/SPD and adoption. I have learned a LOT from them. I want to put my thoughts and ideas down for myself mostly but also for others to read if they are so inclined. Cheers!