Monday, December 31, 2012

End of the Year

The year comes to a close today and I can't help but wish I had more to report.  Despite a huge jump in therapy hours and medication changes, we had had very little progress for Sam.  Developmentally, my 21 month old has sailed past him. He has less language than when he was a toddler and he is more destructive and hyper than ever.  The only thing we have defeated is the really dangerous type of tantrum he was having - the kind in which he scratched up my arms or legs, threw things at me and the girls.  He comes close from time to time but he hasn't had a major blow up for a while.  That seems to be the result of meds. 

 In terms of other behaviors, nothing helps.  I go to meeting after meeting and plead my case for someone, ANYONE to offer up an innovative and intensive apporach but every so-called behaviorist gives me the same lame suggestions that I have been trying for years.  Have you tried removing the things he throws from the environment?  He throws anything and everything - books, toys, paper, shoes, spices, boxes of pasta, mail, pens, and so on.  Shall I remove everything from the house?  Have you tried aversives?  We tried what the school claimed was a very intensive behavior plan in which Sam received and aversive everytime he threw something ("non-preferred taste and visual screen were the main ones).  Sam found them aversive but they had no effect on whether he threw again 10 seconds later.  The suggestion now?  Put a lock on his bedroom door and keep him in there whenever a grown up cannot stay within arm's reach - and since I have three children and a husband who works weekends and usually gets home after dinner on weeknights that would be most of the time.  Seriously.  I am sad, angry and frustrated.

 I don't know what I expected really. I have read the behaviorism books too and I don't have any brilliant ideas.  We have tried all the usual interventions. Sam just tests the limits of behaviorism ( don't say that to a behaviorist, they don't like ot think they have limits).  The school says everything is fine, they are working on it, but he hasn't reached the point of "generalization" yet.  When I inquire further though I find that their idea of his doing "well" only exists because they pretty much never let him out of his "cubby" (each kid has a little area with two chairs and a table blocked off with bookshelves for ABA trials) and his aide is always within 3 feet of him.  That is worse than when he was  3 and 4. 

I am sad for Maya who aches to go on more playdates and daytrips like other kids her age but since most parents aren't doing "drop-offs" with 4 year olds these days I can't do it because I can't bring Sam.  I can't invite her friends here because Sam WILL throw things at them (with absolute certainty).  We try to maximize the time we have when he is out of the house but those hours are limited. 

My husband and I are tired- tired of holding on to hope that the next thing might improve quality of life over here just a little only to have it be as useless as everything else we have tried, tired of being hit with things, tired of seeing the girls get hit with things, tired of knowing we can't sit and eat a proper dinner together as a family, tired of knowing that tomorrow is going to be just as frustrating as today. 

Contrary to what the pity party above might suggest, the year wasn't all bad.  I was lucky enough to find a small UCC church nearby that has been wonderful for the girls.  Maya loves the music teacher and she got to be in her first Christmas pageant a couple of weeks ago.  I am hoping full time school next year will be great for her.  Hannah is a sweet and loving toddler who is talking up a storm (although her sleep habits need some serious help) Work is fine.  We have made some headway with some financial stuff.  I started another blog and I have been learning a lot abotu sewing and knitting from other bloggers (check it out over at www.sanitystitches.blogspot.com)

I am hoping as we head into 2013 that it will be different somehow.  I hope to meet innovative therapists and to find out about breakthroughs in medications.  Unlikely, I know, but you are supposed to be hopeful at the start of a new year, right?  It is as good a reason as any. 

Wednesday, September 26, 2012

Again and Again

We started a new supplement today based on this study
http://www.nature.com/news/amino-acid-deficiency-underlies-rare-form-of-autism-1.11375

Do I think Sam has this particular form of the disorder?  No but amino acids are a safe thing to add to his diet so we will give it a go. 

He also got a med increase today.  Should I have done these things on the same day?  No but is behaviors have us pretty desperate and and the thought of spacing things out makes me ill. 

I have been booted from my own bed - for good it seems.  Or at least until we fix up Sam's room so that there is nothing he can smash - including windows.  I doubt we are going to be there anytime soon.  Until then it isn't safe to "force" him to stay in his room. I can't remember if I ever posted about it but he has done some MAJOR damage when made to stay in his room at night in the past. 

And for some reason we have another dog. . .

Wednesday, August 8, 2012

Autism's Dirty Word

Sam has developed some aggression recently. Aggression is a word many of us hesitate to use in reference to our children.  Having it recorded as one of your child's "issues" can close some doors since not every program is equipped to deal with an aggressive child.  Also, especially with a kid like Sam, "aggressive" just doesn't seem to fit what I am trying to say.  To me, aggressive suggests that the person intends to cause hurt or harm to another.  It suggests more awareness than Sam has.  But, for lack of a better way to explain it, Sam has been aggressive. 

His episodes tend to be either in response to being told "no" or part of an OCD fit.  When he is told "no" to something he really wants (but just can't have) and he is in one of those moods, he throws thing hard at that ceiling, he hits me with the base of his palm, and he scratches.  If he is on the floor he goes for my legs and rakes his nails down.  If he is standing or on a couch he goes for my arm.  The picture shows the results of one morning tantrum.  The OCD fits are something new - he starts to scream and cry because the curtains are crooked, the pillows aren't right, the shoes are messed up - even if he/we fix what he wants it doesn't matter because he will just fixature on something else.  Sometimes he lashes out in those moments.  I cannot lift him up to his room to separate him from everyone when he gets like this.  I stay near him even though it means getting scratched because he is happy to go for the girls if I am not close enough. 

These episodes are not a constant thing.  They seem to come in waves and they are worse when he doesn't have school and his day is less "on the go".  So we are doing our best to keep him busy.

Monday, July 30, 2012

Broken Glass

Sam likes to drop things.  And throw things.  Pretty much all the time.  Usually he fixates on hard plastic objects or cardboard boxes but sometimes he selects dangerous things. Sam decided to punctuate his morning today by smashing one of Maya's snowglobes on the living room floor whiloe I made him breakfast.  Yes, I realize that the snowglobe should not have been where he could get it but at this point there are very few places he can't reach. 

Sam has a pretty intensive behavior plan for throwing/dropping at school and we are starting to bring it home during his home program sessions.  I am thinking about scanning it and posting it in case anyone wants to learn about behavior plans. 

Wednesday, June 27, 2012

A Nice Doctor

I met with a very nice doctor today.  I almost didn't go.  I got a call on Monday reminding me that Sam had an appointment with the developmental pediatrician.  I totally forgot about it and my first thought was to cancel it.  THere is really no role for a developmental ped. at this stage of the game.  We don't need a diagnosis and he doesn't handle meds.  It is one of those appointments that you have to make about 8 months in advance so about 8 months ago someone probably said to me, have you followed up with the developmental pediatrician?  and it seemed like a good idea at the time. 

I wanted to cancel because dragging a baby and Sam (Maya had camp) to one of the worst areas  (the hospital is surrounded by "gentleman's clubs") just made me want to vomit.  But I thought about it for a while and realized that if it went terribly, I just wouldn't go back.  If it went well I might leave with some suggestions. 

Sam was a complete nut, throwing things that whole time. Hannah was a doll.  The doctor was very kind.  He didn't offer any new information but he did give me some suggestions of psychiatrists who work with severely disabled kids.  None of them take my insurance, of course but I will at least call to find out their fees. 

And he said he was sorry things turned out this way.  He was the one who originally said he thought would turn out to be on the higher functioning end.  He didn't say it in a condescending way.  It was sincere and well, just kind.

He even called me when I got home because he thought of another specialist in another state I might want to call - also doesn't take my insurance but that fact that he continued to think about Sam was very nice. 

Tuesday, June 26, 2012

Losing teeth and losing faith in doctors

Sam lost another tooth yesterday.  I only found out becasue I happened to look in his mouth at the right angle.  He had no idea.  Or if he did, held no significance for him.  So far this makes 3 teeth out.  THe first he got a bit upset about, the second he must have swalloed in his sleep and then this one must have come out during the day.  I am sad that this developmental period means nothing to him but I am happy that it is not overly upsetting to him.  I suppose it could be worse.

After weekly follow up calls to the meurologist, I finally got a call back about 2 months after I sent the video of Sam foaming at the mouth.  The doctor still hadn't been able to open the video and said we woudl just talk about it at Sam's next appointment - in August.    AUGUST.  So he hasn't seen the video and has no idea if it is something serious and he says don't worry about it we will talk in August.  I would love to find a new neurologist but I really don't think there are any fantastic doctors out there for Autism.  I have list from various school with "parent recommendations" but this guy is on one of those lists so I don't know how much help they will be. 

Friday, May 25, 2012

IEP Season

The school year is winding down and so IEP season is in full swing as we all plan for next year.  Sam's meeting went well.  It seems that instead of dropping items on the floor hundreds of times a day he is only doing it tens of times a day.  Woo Hoo! (insert sarcastic eye roll) Without any debate, the district consented to continue Sam's after school home program without any breaks in the summer and they added additional hours in August.  He is set to continue at his current public school program- which is a good program-next year.  Sounds good right?  In the moment I went with it and signed the IEP.  I know how lucky we are to live in an area where special education services are provided at this level. 

but. . . . . I met with the special education director of the district in which I work.  We discussed Sam's (lack of) progress and behavioral issues.  SHe told me that if he were in her district she would most definitely look for a private school program for him.  She helped me clearly articulate why his current program is not the most appropriate option for him.  She confirmed one of my big concerns - Sam's current program keeps kids through age 14.  After that is is assumed they will go to life skill or job training programs.  Sam is not on that path.  Unless he has major congnitive gains, he will not fit into a program like that.  At 14 he is likely to be 6 feet tall and very strong.  The chances that we will be able to get him into a good private school program at that point will be very slim.  THe chances are better while he is younger.  She also told me that around here, it isn't much cheaper to send kids like Sam to public programs.  SHe urged me to push for it now.

so. . .  I left a message for my case manager last night (you know, just to make sure she has a great holiday weekend).  I will follow up with a letter today. 

Let the games begin.

Wednesday, May 23, 2012

Maya is 4

SO instead of feeling sorry for myself (and Maya) for not knowing anyone to invite to her party I decided to just send invitations home with all the girls in her class.  I figured there are only about 6 of them and so even if they all said yes it wouldn't bee too big of a gathering.  Four girls came plus two others we know from outside school.  Maya had a blast and Sam managed to only steal a few water bottles and throw them over the fence. 

Friday, April 27, 2012

Seven!

Yesterday Sam turned seven!  I can't believe I have been a mother for seven years.  It was a regular day - everyone had school/work.  I gave Sam a musical toy as his gift.  He likes these Baby Einstein toys which look like stuffed animals with pictures of instruments on their paws. You press the paws and it plays a tune.  Hannah got the turtle for Christmas but Sam quickly claimed it and began holding in right up to his ear and playing it again and again and again. .  I found out they make the same toy in different animals so I got him the Panda (and actually the lion a few weeks back as well) to be extra.  We had ice cream cake after dinner and called it a day. 

It was, as his birthdays always are, bittersweet.  I am happy that we are in a better phase with him. He is happier so fewer tantrums, and we have a decent therapy schedule for him.  The fact that he is getting older is hard because chances of his gaining clear communication and cognition are getting slimmer and slimmer.  

But we keep trying!

Sunday, April 15, 2012

Billing

Something about this doesn't sit right with me.

Earlier this year I found an in-network provider of ABA hours through my health insurance. The BCBA running the program used to work in my son's first school so she knew him. We met and discussed her program. She said she like to get the kids out of the house doing community experiences, social skills classes, swimming, etc. I stopped her right there and said I was not in position to shell out for a bunch of classes if that was going to be necessary. She told me that the classes were covered because they were part of the therapy. We got started and it seemed to be going well. Then. a few weeks into the program, I got an email telling me that she wanted to bill me extra to cover "expenses" not covered by insurance like the swimming and incidental expenses when they go out in the community. She wanted to double my co-pays (an extra 120 a month). I told her that I already provided a few dollars for each community outing and that I could not budget to double my co-pays. I pointed out that I had specifically asked about the cost of the class before we started. SHe dropped the issue.

A few months later I got a bill for double my co-pay amount. I emailed and asked what was going on. SHe replied "We talked about this - it is for extra expenses". I reminded her that we DID talk about it and that I had said that was not ok. As an in-network provider it is illegal for her to bill me beyond the co-pay. Since then she has started dropping all his acitivties. SHe only wants to send a therapist to work alone with him in his room. She doesn't even want him going otu for community experience. SHe has told me that she either wants me to pay out for swimming or to get disabilty to pay for it. Here is the kicker - she wants me to cover the cost of swimming so she can have her therapist dribve him there and she can bill the time as ABA. Does that sound like fraud to you? My husband took Sam to the swimming class once because the therapist was sick. There was nothing for him to do but sit and watch and then get Sam changed after. If there therapist were in the water with him I could understand calling it ABA but if there therapist just takes him there and I am paying for the class, how is that ABA? If she has to cut the class because she can't run her business that way then that is fine but she shouldn't ask me to pay for something that she then wants to bill as one of her services.

I understand she has to run her business and be able to make a living but it feels likes dropping everything that involves taking him out of the house is just mean spirited. Sam loves to go out and they know that. Sam already get "at the table" ABA all day at school and we have a home program from the school. The whole point of signing up with this provider was to add something different to his schedule. It was also to get a little respite for the rest of the family members. I used his Wednesday outing to take a shower - it was the only time possible. I used his other outing to take Maya out. If they are in his room every time then that is all out the window. Going on a community outing doesn't cost her any extra. I send a rather critical email to the group last night so now I am waiting to get kicked out of the program.

Friday, April 13, 2012

This is one of those posts that sounds a little pathetic and is full of self pity. Sorry in advance.

When I moved in with my husband I was finishing up graduate school and working full time. I didn’t really have time to make a lot of friends. I was commuting from New Jersey to New York City. Then I had Sam and between working full time and spending time with him, I didn’ t have time to make a lot of friends. I stared to – I got to know a few more people around the neighborhood and we spent some weekends with friends of my husband. I changed jobs and was working closer to home. I thought I was getting into a routine that would allow me to meet other young parents and build a social network. Then Sam started to show his symptoms. My life became all about therapy, research, and work- as it should have in that situation. As it became more and more difficult to take Sam places I just stopped going anywhere but therapy appointments, work and the grocery store. I have people I talk to at work but there are limits to that. When a friendship doesn’t extend beyond the walls of a particular building it doesn’t fully develop. The financial problems don’t help. On exam or professional development days when we have more than the usual 25 minutes for lunch most of my coworkers go out to eat. Because I worry about splurging on a restaurant meal, I often opt to sit in my room with whatever I packed to eat that morning. No one really calls anymore. I understand why – you can only hear no so many times before you just stop asking.

I am a relatively introverted person. All my life I have needed a certain amount of time to myself so I think I handle the isolation better than many might. There are days and even weeks when I don’t notice or mind at all. But then there are times when it is just lonely.

But even the occasional bought of loneliness would be manageable for me. I might feel down about it from time to time but I would work through that. What is really making me upset right now is that it is starting to affect Maya. You see, her birthday is coming up and I can’t give her a party like she wants – because I have no one to invite. Maya went to a “real” birthday party last summer and ever since she has been dreaming about having a party –with friends- when she turns 4. I assumed that would be possible. I assumed that once she started pre-school she would start getting play date invitations and birthday invitations. So far, she has only had a play date with a girl she knew before school started (don’t misunderstand – this girl and her family are lovely - Maya would play with her every day if she could). She has not been invited to a single birthday party this school year. I don’t know if it is just the age, the particular culture of this school, that fact that I work and so none of the other parents know me? I tried to put her in a Sunday school program to make more friends (and since I would be at church I would meet the parents) but I haven’t found a place that has any kids her age in my religion. Do I have to convert???

I realized how quickly Sam’s and Maya’s birthdays were approaching a couple of nights ago. I started to realize that even if I wanted to plan a simple “kid” party, I don’t have anyone to invite. I don’t have other parent friends with kids who could come, I don’t know any of her classmates’ parents, and our extended family is very limited. We WILL have family over to celebrate but that will be her grandmother, and her great aunt and uncle who are in their 80s and maybe her 2 year old cousin. We love to have them over and it will certainly be a fun time but it is not a get together with friends which is what she keeps asking for and hoping to have in addition. (I am not minimizing the importance of a family celebration here - please don’t misunderstand)

I realize that at her age this is not the biggest deal. She probably will have no memory of not having a birthday party at this age but what I keep thinking about it that I have no way to change this. There is no chance I will ever be able to quit my job. My hours will never allow me to drop her off/pick her up at school so I will never know her classmates or their parents well. Sam is not likely to improve to the point where we can start reconnecting with past acquaintances. At age 5,6, 7 she will notice if other kids have birthday parties and she does not.

So what do other parents of special needs kids, who also have typical childre,n do to give their typical kids a chance to socialize?

Tuesday, April 10, 2012

Roll Tape

I finally got a video of Sam's mouth movement. I emailed it to the neurologist today. Have any of you seen this before?
video

Thursday, March 29, 2012

Seizures

We have wondered whether or not Sam is having seizures ever since his "abnormal" EEG. The report says the abnormal activity could be partial complex seizures. To get more conclusive information we would have to do an inpatient EEG with video. Since Sam would likely tear off his own flesh to remove the wires, we haven't done that yet.

A while back, when Sam went through a phase during which he flipped otu if I wasn't in his bed, I noticed some strange mouth movements when he was sleeping. When he started coming into our room in the middle of the night we saw these movements again. It is kind of like a sucking/chewing/lipsmacking motion that happens repeatedly throughout the night. I mentioned it to the various neurologists and they said the only way to know if it was seizure related was to do that inpatient EEG but neither of them seemed in a rush to do that.

Recently, Sam began to make foam in his mouth during this motion. We have twice seen a big gob of foam on his mouth in his sleep. I called and he has asked us to try to film it so he can get a look at it. I got a picture of the foam the other day but the motion had stopped by the time I got my Flip cam. So, we will keep watch and try to get it recorded. And I have a feeling we may have to do that inpatient EEG at some point in the near future.

Sunday, March 25, 2012

Read and respond

Read this story and then PLEASE send an email. What if your child were denied the right to use his legs in school? Or maybe forced to tie her arm behind her back? What if my son were not allowed to use his augmentation communication device (which would be like putting a gag on a typical child. )

http://www.lovethatmax.com/2012/03/school-bans-kid-with-cerebral-palsy.html

Thursday, March 8, 2012

Hannah was born a year ago tomorrow. She nearly came six weeks earlier when I broke my arm in three places and almost went into early labor. I exhaled when the doctor said, "It's a girl!" As you can see from the picture I still had a cast on my arm. Getting her in and out of the hospital bassinet was not always easy! She nursed right away without issue and she cried when they took her away from me to clean her up and check her out.












Here she is wearing the booties I knit her. They were the best!








She loves to watch her sister.




Big bright blue eyes.












Lucky for us there are 3 spots on the swingset!
The ipad is a big hit in our house. Sam is learning Proloquo2go, Maya loves games, and Hannah like to try to copy both of them. I think this would make a great poster for Apple.


Teething.



Big smile.



We still spend a lot of time like this. Early on we used the Moby wrap and now we use the Ergo carrier. She can't settle down to nap with the constant Sam noise so when she looks like she is fading, I put her in the carrier to nap.


Happy Birthday!









Sunday, March 4, 2012

Losing my Bed

We have learned some things over the last few months. I took Sam to a new neurologist because his ups and downs over the course of a day were so frustrating and he stopped sleeping again. We attempted a new EEG - BIG FAIL. Sam will have to be sedated if he ever has another one. And since he will also have to be sedated if he ever has his teeth properly cleaned I am hoping we can just make a list of all the things that need to be done and coordinate doctors and dentists for one big party in the hospital. WHat are the chances that will work???

We tried different meds. MASSIVE FAILURE. We also tried cutting meds which was also a failure. Sam's behaviors got to the point where the school had to send me restraint paperwork because his tantrums were so bad they were afraid he might get hurt as they tried to stop him from hurting others or breaking things. He caused some pretty major destruction in the home as well. I starting reading about residential placement - and then hated myself.

I got some ABA hours covered by insurance. They were already a covered service but there were no in-network providers when I first looked into it. Now there is someone local and he gets taken to art and music therapy as well as special needs swimming. Sam doesn't give a hoot about art but it gets him out and since he like ot be on the go, it helps.

We went back to the main med Sam was on before only in a different form (tablet instead of liquid) and a once a day dosage instead of twice. Sma is a much happier camper. He is no less hyper and he still causes damage with his constant dropping and throwing but the aggrssive tantrums are down quite a bit.

In this whole adventure I lost my bed. Sam has been fixated on sleeping a chunk of the night in our bed. For the last couple of years I have done the "right" thing and put him back in his room each time he tries. Usually this meant a few sleepless nights putting him back again and again until he got the idea. Then a few weeks later I would have to repeat the process. THis is the dirty secret of behaviorism - beating the behavior is only temporary. You may never win the battle. WHen Sam was really bad in the fall, he smashed his closet door, broke it and then threw it out the door at me. He is not the incredible hulk - it was one of thoose Ikea frestanding wardrobes (his room has not build in closet). But that was the end of putting him back in his room. He realized his strength and now he does try to kick through his real door (and I think he could if he wanted to). His school wants me to strip his room of everything but a mattress so he can be contained in there but that idea assumes that there is room somewhere else in the house to put everything and there is not. Also, when he is worked up I cannot transport him to his room so it is a silly idea. Now Sam comes to out bed sometime between 11:30 and 12:30 and I go to his with the baby. Unless he has wet the bed and then we get the couch downstairs.

We are very glad to have a happier Sam back but we are still at a loss as to what to do next. His behaviors, while not aggressive, are still very destructive and impossible to manage despite the help of a team of home therapists.

Saturday, January 14, 2012

The Value of a Life

Even those of us that have children who struggle to communicate KNOW that there is more going on in those heads than can be expressed. "Mentally Retarded" and "Intellectually Disabled" may be valid labels but they should not determine the worth of the child.

This raises some serious questions about who gets to determine the value of your child's life. I suggest you read it and pass it on/repost.

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/


If you feel moved to do something about it there are some suggestions here:

http://www.lovethatmax.com/2012/01/should-kids-with-disabilities-be-denied.html