Milestone

Alex had a Dr appt yesterday to follow up since starting Ritalin.  His Dr dropped a bombshell on me.  He is taking ASD off of Alex's list of diagnoses because he feels he is no longer exhibiting symptoms of ASD.  It wasn't a total shock since I have been told before that he does not really "seem like a kid with ASD", although no one could really pinpoint his diagnosis so the original diagnosis of ASD stuck.  It's weird, 5 years ago if you had told me this diagnosis would eventually be dropped, I would have been so relieved!  However, since then I have learned so much about ASD and that a label does not define a child.  Alex is still "different".  He is still quirky and often says things that don't make sense.  He still needs to jump and swing way more than most kids.  He still has difficulty paying attention, reading and making friends.  His "label" now is ADHD.  However, he is still the same kid who had an official diagnosis of ASD 2 days ago.  He is still funny, sweet, smart, and uniquely Alex. 

Alex is having surgery on his ears next month.  This will be plastic surgery to correct ears which are very large and stick out.  I have mixed feelings.  We are doing it on the advice of his pediatrician and his ENT who both feel it is important for his social development, since his ears are quite pronounced.  I see their point.  A child who is "different" does not need something ELSE to make him a target of bullying.  However, I am wary of general anesthesia for what is not essential surgery.  This is one of those times when my husband and I have made a decision (to go ahead with the surgery) and then pray like crazy that we made the right one. 

Happy Halloween!!

Oblivious

Yesterday Sara came home from school with a fever.  She was not all that sick but was not allowed back at school today because they need to be fever-free for 24 hours.  DH is in San Francisco and I HAD to go to work today.  We are already short staffed.  My wonderful mom offered to watch Sara at her house so I drove her up there yesterday.  It is about an hour drive away.  I drove her up there while the other kids were at school.  She was gone when they got home and of course all last evening.

This morning Alex said "Where is Sara?".  I was dumbfounded.  I know I had told the kids she was sick and at grandma's but maybe he was not there when I told them?  He honestly had no idea where she was and even  more disturbing, he hadn't noticed she was gone until this morning.

We always joke about Alex being oblivious and "out of it" but this just slammed it home.  How can a 10 year old be this oblivious to his surroundings and activity/life going on around him?  I find it scary for his own safety.  He is so unaware.  He is the opposite of kids on the spectrum who hate change or who have to have things a certain way.  He barely notices change and does not care one bit if things are changed up.  I once changed around all the furniture in his room and he barely noticed that.  It scares me.  I don't know what to make of it.  I don't know what it "means" or if it means anything.  There is tons of information about kids who are inflexible or hate change and how to deal with it.  But not so much on kids who are completely oblivious to much of what is happening right in front of them and who don't even notice even rather large changes.  I am at a loss.

Summer and something new to try

When I took Alex for his physical this summer I had a pretty long talk with the pediatrician about his year at school.  I had brought along the comments from his report cards and IEP.   Over and over: "Not handing in work", "Not completing work", "Not following directions", "Not paying attention".  Nowhere does it say that he is not capable of the work or that he doesn't understand or that he is below grade level.  To make a long story short, the doctor really wants him to try Ritalin.  Gulp.

Alex was prescribed Ritalin a few years ago when he was about 7 and I never filled the prescription.  I felt he was too young and was only in 1st grade.  However, now he is almost 10 and will be in 4th.  He really needs to be paying attention, completing work and handing things in.  I am not a big fan of this type of medication and do feel that it is overprescribed.  I am constantly amazed at work by how many patients (children and adults) are on Ritalin or some other ADHD medication.  It really is staggering.  However, Alex is a child who very clearly has ADHD symptoms quite severely.  In fact, that was his diagnosis when we took him to Kennedy Krieger for an evaluation: Severe ADHD, not ASD.  I am willing to try it to see if it helps.  And I do have some previous experience.  Our oldest son who is now 15 was diagnosed with ADHD at age 8.  His symptoms were less severe than Alex's and his social functioning was much more mature.  He was extremely hyperactive and unable to sit still.  He is still like that but year round sports has helped.  He was on medication in grades 4 and 5 and has functioned fairly well without it ever since.  Still, he is the only person I know who paces while he reads.  The meds did help him.  His grades improved dramatically and he was able to play with his friends better.  He would interrupt them and tire of whatever they were doing very quickly.  The medication helped him "chill" a little and it was good thing for him socially.

So..we will see what happens.  I know Ritalin won't help him socially (although it may help him pay more attention to his peers), it won't help his sometimes labored speech and reading and it won't help his sensory needs (which are still quite extensive- he is a sensory seeker).  We have done years of therapy which has now come to an end.  Maybe this is the next step for him. 

The end of 3rd grade

Alex is almost done with 3rd grade.  Funny, when he was small and going to his special ed preschool classes I wasn't sure we would ever get here.  I had such a hard time imagining him at this age. 

This year he played soccer in the fall and spring.  He played basketball in the winter.  He did pretty well with both sports.  I feel like (in addition to the exercise) team sports are good for him.  He is practicing listening (to his coach and his teammates), he is learning to work collaboratively, he is having to communicate with his teammates, he feels as though he belongs. 

He has been playing with 3 other boys in the third grade.  One is a neighbor who comes over about twice a week.  He and Alex play pretty rough - they play on the trampoline and they play dodgeball.  It is good for Alex to expend his energy with another child who is not intimidated by his roughness.   He also plays with a boy who really only wants to play on the computer.  This is ok, it is only once a week or so.  It is their thing and I am OK with it since it is not too often.  The third boy has Asperger's.  He is more affected than Alex.  He is older than Alex although in his class.  Alex seems to show him how to do things.  It is interesting watching them play.  They do a lot of swinging and jumping on the trampoline.  Not much game playing or talking. 

Alex has struggled mightily with paying attention and staying organized at school.  I have gotten numerous calls from the special ed teacher about this throughout the year.  He is oblivious to much that is going on.  It is hard to know how to help him since I am not in school with him.  I try to help him keep his homework folder and backpack organized but I cannot be there to remind him to pay attention or to write his name on his paper or to hand things in! 

Although I have avoided it so far, I have made an appointment with the ADHD pediatrician at his pediatrician's office and I am open to trying some medication.  He is really struggling.  I do hear a lot of comments from people like "ADHD doesn't really exist" and "People should not drug their kids".  However, I am open to trying this to help him.  Not to make my life or the teacher's life easier.  He is not in a special school or a special classroom.  He is mainstreamed in a "regular" classroom and has to perform all the same tasks as the typical kids.  And he is struggling, have I mentioned that??  He cannot follow more than one command.  For instance, I can say "Go get your shoes on" and he MIGHT do it.  More often, I will find him distracted by the cat or a toy or a pencil.  He cannot follow 2 commands like "Brush your teeth and get your pajamas on".  He is well over 9 years old.  He should be able to do this, but cannot.  Is it any wonder he is having trouble in a typical 3rd grade classroom where they are expected to do multiple tasks on their own without being reminded? 

Did I mention he loves to run? His uncle took him to a fun run and he won!  He also came in 3rd in his whole school for most laps run during the school's jog club in April.  He has boundless energy.

I am looking forward to summer and the end of homework!

3rd Grade

I know I have not posted in so long.  What can I say?  I have gone back to work in nursing and after taking care of patients at work and coming home and taking care of my own 4 kids, I am exhausted most days!  I am glad to be back at work, I did miss it.

One thing that I feel guilty about, however, is not being able to volunteer at school or be involved at school like I used to be.  This has been kind of a tough year for Alex.  They say that in 3rd grade the focus goes from "learning to read" to "reading to learn" and that this transition is difficult for many children.  Alex is having a hard time with the new demands: note taking, book reports, geography.  Mostly, though, he struggles with just the "housekeeping" of school: remembering his name on his paper, remembering to turn things in, remembering his homework, and yes, even remembering to go straight to class from the bus.  He has 13 (THIRTEEN!!) tardies because he does not go right to class from the bus.  On top of his difficulties, we are strapped with a teacher who apparently does not think it is important to communicate with parents.  Extremely frustrating!!!

Alex takes it all in stride.  He has 2 friends who come over to play regularly.  He just finished basketball (he is a great defensive player) and is ready to start soccer.  He still loves to swing and jump on the trampoline.  We got him an inexpensive laptop for Christmas and it is his pride and joy.  Best investment I ever made.  We also recently found out he has asthma and he is independently using his inhaler and taking his other new medications with very little guidance from me.  It is amazing to me how much he is capable of when just given reminders and a little guidance.  Makes me wonder what is going on at school sometimes!

I hope all is well with you my friends! 

Concrete Thinking

Anyone who knows someone on the spectrum recognizes one of the hallmarks is concrete thinking.  Sometimes it is kind of funny.  On vacation at the beach last week Alex wanted to leave the beach house and go to the beach.  I said he had to find his aunt who was already there so an adult would know he was down there.  I said "If you can't find Aunt Lucy come back and wait for me to take you."  He said "OK!" and went running down the steps, only to turn around and say "What do I do if I find her?" 

I am thinking the average 4-5 year old would not need an explanation of what to do if he found his aunt.  However, at almost 9 Alex needed to ask.  There is a definite deficit with abstract thinking and inferencing.  We do inferencing activities at home which he does pretty well on for the most part, but using those skills in real life is sometimes a challenge.  Sometimes it makes for a chuckle!

The Start of Summer

Summer has begun and now that I have a job I have to find childcare for the first time.  It is a real challenge!  I have been busy for weeks trying to cobble together childcare for my two youngest and I only work part-time!  They will be doing some camps and I have some babysitters and help from my mom. 

I have been pretty diligent about keeping Alex engaged and not letting him just go off by himself a lot.  He played soccer again this spring and had twice weekly playdates with a boy in his class.  I try to take him with me when I run errands as much as he will tolerate and engage him in the tasks of grocery shopping, going to the library, taking the cat to the vet, etc.  I try to use the conversation techniques we learned in RDI.  For example, rather than asking him yes/no questions, I make statements for him to respond to or ask open ended questions.  This "forces" him to make natural conversation and use his language skills.  He is doing much better with this.  He still struggles with "echoing" what he said and eye contact.  Eye contact does not come naturally to him and he has to think about it each time he talks to someone.  He does not like it when people get too close.  When his friend runs up to him at the bus stop as boys do, Alex shrinks away from him and often wants to wait in the house for the bus.  Too much commotion at the bus stop.  Interestingly, he is fine with "wrestling" and rough-housing type games so it is not the contact he doesn't like.  He just doesn't seem to like when people "come at him".  I have noticed this in him since he was very small. 

He has new interests now that he is getting older.  He loves Star Wars, basketball, sharks, and chess.  I try to explore anything he is interested in in any way I can and from those interests, try to introduce him to others.  My goal is to keep him engaged, communicating and asking questions.  It is so easy for him to slink off and spend the whole day by himself on the trampoline or rolling around on an exercise ball.  He is very much able to stay engaged and play and communicate nearly as well as other 8 year olds.  It just does not come as naturally to him.  And he does need breaks from activities and people.  This is when I find him rolling around on his exercise ball.  He will tell me "I need to be away."  I am glad he can communicate this need to me.  There was a time when he could not. 

He is officially done with the early elementary school years as he begins 3rd grade in 10 short weeks.  I have been somewhat sad to watch all my kids grow up out of the little kid stage.  I am finding it all that much harder with Alex.  We have been through so much together through his early childhood years!  Yet I see him pulling away and yearning for independence.  It makes me so happy and so sad at the same time.  

Annual Physical

It's been a long time since I have posted!  Mostly just because I have been very busy.  I have been substituting for our school district both as a teacher's aide in special ed and in the clinic for the school nurses.  And I have been job hunting and taking an RN Return to Practice class at our local community college.  And last week I got a job!  I will be going back to work outside the home for the first time in 12 years.  I have very mixed feelings.  Excited to get back to work and back to nursing.  Excited to learn some new skills.  But sad to leave my stay-at-home mom days behind.  I am so grateful to have had the luxury of the choice to stay home with my kids.  Especially Alex.  I think about all those preschool days and years of therapy.  I'm not sure how I would have managed if I had had to work, especially since my husband's job requires some travel.  And I have said over and over "I don't know how those working moms do it."  I still don't know but I guess I will find out!

As for Alex, second grade is coming to a close and I have to say it has been a pretty successful year overall.  A couple interesting tidbits.  One of Alex's issues is his tendency to sometimes get obsessed with things.  Well this year I kept hearing over and over about this boy in his class, K.  I mean it was "K, this" and "K, that".  Naturally, I assumed this child must be the uber-popular type all kids seem to gravitate towards.  Well as I found out from my substituting, this boy is obviously autistic.  Alex thinks he walks on water.  He is a cute interesting little boy, just not what I expected.  How's that for me stereotyping and making assumptions?  I learn something new from Alex all the time!

Alex has really been doing well over all.  Like most kids, and especially kids on the spectrum, he does really well when there is structure and he knows what to expect.  He does well and communicates well with kids and adults he is familiar with.  Today I was reminded of his "spectrummy side" when we went for his annual physical.  First off I pulled him out of school which didn't upset him but nonetheless disrupted his routine.  We went to the doctor and I reminded him that when she asked him questions, he needed to look at her and answer her.  His way of dealing with an unfamiliar and therefore uncomfortable situation was to get extremely silly.  He answered her questions but made up fake answers.  He told he he doesn't brush his teeth, he doesn't go to the dentist, he doesn't wear a helmet when he rides his bike and he doesn't go to sleep at night.  He was goofy and ridiculous throughout the whole appointment.  I have to admit I was angry and annoyed even as I recognized this was his way of dealing with the unfamiliar.  He is just not capable of dealing with situations where he feels uncomfortable like typical kids can.  He often acts ridiculous.  I think this is an area I will work on with him.  Learning to deal with unfamiliar circumstances and people.  Many kids struggle with this but for kids on the spectrum it is a hallmark of their behavior.  Alex does not have meltdowns but often acts out of control, goofy and silly when he is uncomfortable.  It can be almost as bad as an all-out autistic meltdown.  By the end of the appointment he was running uncontrollably around the waiting room like a 2 year old while I "tried" to talk to the doctor.  By the time we got back to school and he was in his element again, he was calm and in control of himself again.  Clearly in his comfort zone.

Musings on parenthood and "Parenthood"

Yes, I know it's been a while since I have written here. Why? Summer with 4 kids is the main reason. The other is that I haven't felt the urge to blog. Nothing much has changed. Alex continues with speech therapy and continues to do fairly well albeit with the challenges that have always and will always be there for him.

That's the thing about something like SPD, ASD, or ADHD. There is no cure, there is no "growing out of it". Sure, some behaviors improve but there are always new challenges to take their place. It is not like an illness or injury when you can look back and say "remember when..." and recognize your child has healed or recovered. It just is. We are blessed. Alex is doing much better than I hoped for back when he was a non-verbal 3 year old. He has a new friend that lives down the street. He is participating in soccer and is mainstreamed at school. I try not to think too much about the future because that is when I get overwhelmed. I see my older sons in middle school and how vicious kids that age are and can't stand the thought of my vulnerable son in that place. I try to take it one day at a time while getting as much help as possible for him now to lessen his vulnerability when he is 12 and 13.

As I have blogged previously, I love the show "Parenthood" for it's sensitive and realistic portrayal of a boy with Asperger's. However, I was cringing last night about a new storyline that seems to have popped up: adoption. One of the characters and her husband are hoping to adopt. The "latte girl" at her office is pregnant and said she is not keeping the baby. This prompted Julia (who is hoping to adopt) to mention to family members she wondered if she could "buy the latte girl's baby". I think? it was meant as a kind of sarcastic joke (which wasn't funny) AND I suspect this storyline will continue and "something" will develop between the latte girl and Julia concerning the baby.

I read that one of the producers (or maybe writers?) on "Parenthood" has a child with Asperger's and that is why they have done such as good job on a subject where so many other TV shows and movies have portrayed only stereotypes. I can only HOPE that there is someone on set who can give the same kind of sensitivity to adoption but so far it isn't looking promising. I for one will be quite disappointed if the storyline devolves into a made-for-TV-movie type stereotype of adoption. Keeping my fingers crossed...

Goodbye OT!!

Alex has reached a milestone: he was discharged from OT a couple weeks ago. He went to OT for sensory integration which will always be a challenge for him. His goals were to stop chewing everying, to be able to tolerate smells better, to get a handle on his sensory seeking (the constant jumping and spinning, etc.), and to strengthen his core. (Many kids with sensory processing disorder have weak cores, including Alex.) He also worked a lot on motor planning activities. He was often unable to execute complex motor activities due to poor motor planning. It was interesting to watch him and Sara on playground equipments. She would be up and flipping around in seconds and he couldn't seem to figure out how to do anything.

The discharge does not mean he no longer has SPD or that his sensory issues are resolved. Far from it. We still have plenty to work on at home and he will likely always have issues with sensory processing. However, he has met the goals we set for him when therapy began and he is learning how to compensate for some of his difficulties. For example, instead of jumping mindlessly on the furniture or running back and forth between furniture pieces and slamming himself into them (to get needed sensory input) he has learned to jump on the trampoline or ask to swing on the neighbor's swingset. These are more socially appropriate ways to get his sensory input. He has stopped chewing on all his clothes, sucking his fingers and biting metal objects. We have learned that soda, with its carbonation, gives him the oral input he craves. Not that I love giving him soda, but it is better than having a 7.5 year old who sucks his fingers all day long or chews on metal fences and bleachers. We have learned that the therapeutic listening CDs really calm him, that doing wheelbarrow walking and therapy ball exercises will keep his core strengthened, and that word searches and puzzles help with his visual processing. We continue to work on these at home as well as other exercises and activities.

He continues in speech therapy to help with pragmatic language, otherwise known as social language. Recent testing indicates this is still a problem for him. He particularly struggles with inferencing. In other words, he can't guess what is going to happen, or what someone means unless it is said outright. Even in books for much younger children, he cannot guess what will happen next or tell why someone is doing something unless it is spelled out. He gets humor and sarcasm which is a huge plus. He is actually pretty funny and jokes a lot. I feel lucky about this. Many kids with pragmatic language problems don't understand humor and/or sarcasm. He understands that words can have more than one meaning and that some expressions can't be taken literally (for example: I was laughing my head off.) Again, many kids with pragmatic language disorders don't understand these types of expressions. He doesn't use expressions like these or speak as naturally as a neuro-typical child, but he does usually understand when others use them. Often when he speaks, it sounds like he is struggling to get his words out. He often whispers to himself and repeats words. These are issues that don't seem to be resolving despite 6 years of Speech Therapy and perhaps they never will. I am OK with that. I am so thankful he is able to fully express himself and carry on a conversation with me as there was a time when it didn't seem possible.

So...goodbye for now OT. Can't say I will miss you!!

Yellow Card

Today Alex got a "yellow card" at school. This means he was given a warning. When you get to red there is a punishment. I am probably the only mom at my kids' school who was happy about a yellow card. He got the yellow card because he was playing tabletop hockey with another boy during classtime. That makes me ecstatic! Because he was playing with another boy. Because he wasn't obssesed with following the rules (as he is prone to do). Because he was behaving like a typical 7-year-old boy. I couldn't let him know I was "happy". But when he got choked up telling me about it, I let him know that it was OK and I wasn't angry. Because I know it is not likely to happen again. He is proud of his "green card" streak. He is more obsessed with things like that than is normal for a 1st grade boy. So although most moms might be a bit disappointed (as I always was when my older boys behaved that way), I am very proud of that yellow card. And we talked about how the yellow card doesn't take away from all the green cards he has gotten. It's funny how your focus changes when you have a child like Alex. I celebrate the everyday boy things that most parents don't give a second thought to. Yay!! He played tabletop hockey! And he didn't completely fall apart about the yellow card. He wasn't happy about it but he was able to handle it.

Humming Along

I haven't posted in quite a while, I know. I don't want to jinx anything. Things are going quite well for Alex now. He has met all his IEP goals FOR THE YEAR already, at the half-way mark.

Here is what his special ed teacher wrote about his Communication strengths/weaknesses: "A has made some new friends this school year. He plays with classmates, shares, and has conversations with them. A is respectful to his teachers and peers and can work cooperatively in a group. A asks thoughtful questions to gain clarification during class discussions. A's oral language skills are on grade level. He continues to expand his listening and speaking vocabularies and adapts his oral language to fit the situation." NOTE, THERE ARE NO WEAKNESSES noted!!!!

Comments for Behavior/Social Skills: "A's behavior is age-appropriate. He no longer uses a behavior chart to monitor his behavior, and can follow directions and complete classwork. A is able to word independently and listen attentively. He contributes to group discussions and asks thoughtful questions."

I mean, gasp, so many phrases here NEVER used to describe Alex before: "made some new friends", "has conversations", "can work cooperatively in a group", "ORAL LANGUAGE SKILLS ARE ON GRADE LEVEL"!!!!!!!!!!!! "behavior is age appropriate" "able to listen attentively"

This is a child who was woefully behind in language just few years ago. Who could not tolerate being in groups, whose behavior was ALWAYS described as immature, and who needed an aide or special ed teacher to keep him on task.

OK, yes, he comes home and stims (sensory seeks? Are they the same thing? I never get a straight answer for this) for about hour every day. In the warmer months it is an hour straight of trampoline jumping. Now it is dribbling a basketball around the house while jumping around which some days drives me to the brink. But I grit my teeth because I know he has worked hard to hold it together ALL DAY at school. I know some days a recess he plays on the slides by himself and that some days he feels sick at lunch because of the smells. BUT he is still making tremendous gains.

For the first time since he was a baby, I am more concerned about one of my other kids than I am about him. My 7th grader is really pushing the limits these days. I thought this behavior would occur closer to 14 (he is 12.5). But we are in the midst of some rebellion and some bad decision-making. Now that my youngest is 6 and we are safely out of the sometimes difficult toddler/pre-school years I must gear up for adolescence! I have one right on his heels, turning 11 next month. The mouth, the eye-rolling, the word "whatever" which I now truly hate, the texting, the secret little jokes, the homework that is not done, etc. Why don't I feel ready for this???

On a side note, this same 7th grader did fantastic at his wrestling tournament this weekend. He won all 3 matches. His 2nd opponent threw up in the middle of their match and I was completely disgusted and rattled and wanted him to forfeit (the sick kid was not forfeiting) but my son said to me "Mom, it's OK. I want to finish what I started." and was not rattled by his puking opponent. Every now and then I see a glimpse of the man he will become.

Thanks to those of you who have inquired as to where I have been. Just busy and reading a lot of other blogs!!

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??!!

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.

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.

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...

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.

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.)