ARD results, part 1

I never updated about the ARD we had a week ago.  Mainly because I was very emotional and unhappy after the ARD.  There wasn’t any new information.  “A” qualified as PPD-NOS and with a speech need.  “B” qualified with a speech need.  “A’s” ARD drug on FOREVER.  Everything was fine until the very end when they recommended services.  The services themselves were fine, 5 days a week, 3 hours a day of PPCD with a very nice and capable teacher.  That teacher has a morning class and and afternoon class.  The morning class is more structured and for lower functioning children with autism.  The afternoon, which mostly has older children (4 year olds) is for higher functioning kids, some on the spectrum, some not.  “A” was recommended for that afternoon class.  In theory that is exactly what we want.  We want him to be in the higher functioning class with good peer role models.  The afternoon class is from noon until 3pm.

That is exactly nap time.  Neither one of the boys are anywhere close to dropping their afternoon nap.  The boys get up every day sometime between 6am and 7am.  They take a nap around 12:30-2:30pm.  Then they go to bed at 7:00pm each night.  We very rarely deviate from this schedule, only on really special occasions.  The boys are not the kind of kids who, if they go to bed late one night, will sleep in extra long the next morning.  In fact they might be up earlier than normal when they have a late bedtime.  They have been that way their entire lives.  If they were laying awake for a couple hours each night, unable to go to sleep because of the nap, I would agree it is time to start dropping a nap or two a week.  But that isn’t our case.

And I know “A”.  If he is sleep deprived he regresses.  He has many more “autistic” tendencies if he is tired.  So what good would a class that makes him miss a nap be for him?  I feel like either way we lose.  If we do the PPCD class he will lose a nap and the class will be a waste of time because he won’t be able to focus or learn at all.  If we refuse the PPCD class because he needs the nap he is missing out on the opportunity to be with a teacher trained to help him.

It is an extremely difficult place to be.

I spent much of Wednesday after the ARD in tears and feeling sick about the whole thing.  Thursday was much the same.  By Friday last week I at least felt like I wasn’t going to burst into tears at any moment.

There is much more to “A’s” story and I haven’t even touched on “B’s” ARD.  So I will do this in parts.  Plus I have work to do right now!


ARD Day

Today we are having the boys’ ARDs for the school district.  We will review the testing and evaluations that were conducted with each of the boys and then hear what the district recommendations for services are for each of them.  Then we will make decisions about those services.

Monday night, I received a call from the head of the autism assessment team for “A”.  She wanted to email the report to look over before the ARD and discuss a few things.  She said that “A” does qualify for services as PDD-NOS.  They are recommending a 5 day-a-week program that is 3 hours each day.  The teacher is trained in many autism methods.  The class if for high functioning children like “A” and will also have some non-spectrum kids in it as well.  I am very excited about this and can’t wait to discuss it more today at the meeting.

In fact, for the first time in 2011, I felt so very uplifted and positive about the situation with “A”.  So much is unknown about his future and exactly what we are dealing with.  He is barely 3.  In February I expected a diagnosis of PDD-NOS from the developmental pediatrician and not full blown Autism.  I was pleased with this diagnosis for a couple of big reasons.  First, it shows just how far “A” has come since February.  When I think of him in February and I think of him now…he is a completely different child in so many ways.  We have worked so hard and so tirelessly with him and on Monday night I felt like we had hit the payoff.  It was an amazing feeling.  Second, it is nice that other people see how much potential he has and are excited about his prospects.  I always worry that as “mom” I sometimes don’t see the situation for what it is.  I love my children and no matter what I see the good and the potential in them.  Sometimes I worry that I might be blinded by my love for them.  But other people really are seeing what I am seeing and that is so very reassuring!

We don’t know yet what “B” will qualify for.  We should have received reports for both of the boys on their speech testing.  But, they were having some confidentiality issues with mailing reports out in the summer.  While frustrating, I do understand.  I could have demanded the reports because it is our parental right to review them prior to ARD.  But I decided that we pretty much know what they are going to say in regards to ability anyway.  We have been working with ECI and I am knowledgeable in these things so it didn’t feel overly pressing.

As for today, I am ready for the ARD.  I am ready to find out what we will be doing in a month.  I am ready to make plans.  I am ready to move on and forward.  I am ready to KNOW what the situation is and quit fretting over it all.

But I am also not ready.  I am not ready to be the parent in an ARD.  I am not ready to take this one last step…the step that clearly sets my children in a special education program.  They need it and I will never deny them what they need.  And while I know where my childrens’ challenges and needs lie it is always hard to admit that they really do require special education.  It will be so different to sit on the parent side of the table instead of the teacher side of the table.  I am no stranger to the world of ARDs…but I am in unfamiliar territory.


An observation

I am always observing the boys.  I am looking for progress and signs that things are moving forward.  But I am also looking for warning signals.  Something that says I need to intervene because “B” is about to bite “A”.  Or that “A” is overstimulated and we need a break.  I am always watching…always vigilant.

In the last few days I have made a strange observation.  For awhile now I have thought that “B” has so many strange little quirks.  Those quirks don’t really add up to anything in particular but they do say that there is something more going on in him.  He has sensory issues, but not ones that are extremely severe.  He has random, intense and strange fears.  He like things a certain way.  He has an amazing memory and expects us to do things that way every time and he gets upset when it isn’t that way.

Basically, “B” has all those random quirks that most people associate with autism.  But “B” doesn’t have autism…”A” does.  But “A” doesn’t have all those classic markers of autism.  They ask us about them and I say no to every one of them…except for the social part.  The social interactions, the main reason that autism is diagnosed, is where “A” struggles.

It’s almost like God…or the universe…or fate…or whatever is in control of everything decided to split the autism into both boys.  “A” got the part that gives him a diagnosis and “B” got all the random quirks that usually go with the diagnosis.  If you put them together then you would see a child who fits the more classic definition of Autism.

It is a strange observation.  There is no proof of this…just my observation and my knowledge of things.

Maybe, this was the way the universe decided to sort it out this time.  Each boy has some struggles but neither has struggles that completely disrupt his life.  Maybe my fraternal boys are more tied to each other than we can know.  Sometimes there are no answers.  We can never know “why” sometimes.

Not that any of this changes anything or makes a difference.

It is simply an observation….


An update

Once again I haven’t been posting here much…or really anywhere.  We will say that summer is causing my lack of words and pulling me in other directions.

We don’t have any results from our speech testing with the school district and I have no idea when to expect any.  It is the middle of the summer and this is the time when most school districts shut down and everyone goes on vacation.  They haven’t even finished “A’s” autism assessment yet.  The head of the autism team will be evaluating him at preschool this coming Wednesday and then they will look at everything and make determinations.

All I know is that we have to have their ARDs before they turn three at the end of August.  So we have plenty of time.  Mostly I don’t think about it because it would drive me crazy!

Preschool is going well.  We have starting to have more interest and even some success on the whole potty training front.

This last week I might with the social worker again regarding “B”.  His tantrums have diminished some since he has had some success on the potty and because his vocabulary is increasing a little.  That makes me believe that the really bad tantrums were more about frustration than anything else.  But we have been watching a different problem develop and grow pretty quickly.  “B” has trouble letting things go and moving on.  For example, one day with our play therapist we had the lap top out to download some video she took of the boys at school.  “B” was excited about that.  Several days later when the speech therapist was here “B” wanted to get the lap top but we didn’t need it.  He was very unhappy about it and we could not redirect him very well.  Every 5 minutes or so he would return to the topic of the lap top until the speech therapist left.  It doesn’t seem like much, but when it happens every day and sometimes several times a day it becomes a problem.  Usually he is so upset that we need a complete “reset” like a nap or bedtime.  But occasionally that doesn’t even help or he wakes up the next morning and the first thing he says or does pertains to whatever he couldn’t let go of the day before.

The social worker says she has seen this before.  There are two possibilities, it could be behavioral or emotional.  If it is behavioral, then we have at some point inadvertently reinforced this behavior at some point.  But behaviors can be fixed.  If it is emotional then we are dealing with a completely different issue and there is no quick or even not so quick fix.  I think it is a little bit of both.  Sometimes, when it is because he cannot have something he wants and I have said no I think he is just mad and it is more of a behavioral thing.  But other times…it has nothing to do with his behavior and everything to do about emotional distress.  So we are working on some behavioral strategies the next couple of weeks to see what happens.

Either way, it is heartbreaking to see him when he is so distraught over something and I cannot fix it.  I have never worried as much as “B” as I have “A”.  But right now I am very worried about “B”.  Not a fun place to be.

So, this is where we are.  Vocabularies are increasing.  Social skills are improving.  Life is moving forward at an alarming place.  But we just keep going.  Through the tears and tantrums and giggles and celebrations we move forward.  And forward is the only way to go…


The next step

I haven’t posted on here in awhile. Things are pretty much them same as the last time I wrote. Our therapies are the same and we are moving forward. There have been plenty of changes as far as skills and growth that I need to write about. I just haven’t taken the time to do it.

But we are hitting a new step. At the end of August the boys turn 3 and we age out of ECI. I am so sad about aging out because I will miss our therapists terribly. But because we are getting close to aging out it is time to start the transition with the school district.  Next week they will both have speech evaluations.  “A” will also have an autism evaluation.  Most likely he will not qualify for services based on his autism because he is so high functioning.

We do think that both boys will qualify for speech services.  But we will see what happens with the evaluations and then what the recommendations will be.

We have a parent interview for the first part of the autism assessment this Friday.  Then there will be observations at home, school, and in a public place.

Before they turn 3 at the end of August we will have their ARD (admission, review, dismissal) meeting to formally determine their services.  (For those who didn’t click the link, ARDs are the special education meetings in Texas.  At those meetings services are determined, testing/evaluations are suggested or reviewed, goals are discussed and set.)  I sat in many ARDs as a general education teacher.  At the school level a general education teacher and special education teacher as well as the case manager and parents are present.  Science is one of the classes that is completely mainstreamed, meaning there are no special ed pull-out classes for children who have very specific needs.  I am sure some districts offer “special ed science” but that was never my experience.

This time I will be sitting in the ARD as the parent not the teacher.  I am not sure how I feel about that yet.  You would think I would have accepted it and moved on.  I have known it was coming for a very long time now.  But…it is still a change.  This time I am on the other side of the table making sure my children are receiving the very best the district has to offer.  And while I sat in ARDs where no parents were present, you can be certain that will never be the case for my boys!


Proof

Today our play therapist brought me something that was priceless.

She brought me video proof that we made the right decision in starting preschool.

Last Friday, during her school visit she video taped “A” and their interactions. She only showed me a few sections of the video but she is burning me a DVD. The things I saw in those few sections almost brought me to tears.

I saw “A” following complex directions and responding to his name the first time it was called. I saw him holding the hand of another student as that child invited him to play on the slide. “A” is not big on hand holding…although he will do it if asked by me or another trusted adult. I saw him enjoy pretend play with the bristle blocks. I saw him willingly wash his hands after snack without prompt.

In short…I saw my little boy thriving in a preschool setting. It is everything that I want for him. Sure, we still have lots of things to work on and he has a ways to go…but he has adapted to the new situation. He needs some extra prompts but he is watching and learning from the other children.

I feel certain that preschool has increased his response to his name. I know he is watching the other kids because suddenly he wants to copy what “B” does when they are at home. I can tell he is working out social communication with “B” first where he feels safe. It is a first step that is so important. I was so scared about preschool. But we searched for the right place and we found a great one. I think part of it was good research and part of it was pure luck.

There was also a little bit of “B” in the video and I am proud of him as well. “B” is certainly going to be my one who tests the rules. (Case in point, he climbed the small fence between the little kids play area and the bigger kids play area and had one leg over the top before a teacher could get to him. He is freaking fast and that is totally NOT the teacher’s fault!)

I feel like I took a parenting leap in the last month. I was nervous about preschool and after the first two weeks of 2-day full-day didn’t work I was even more worried. But now we have had two full weeks of 3-day half-day and it is going much better. I feel like I won this round of the parenting game. And I am so glad that I did. Preschool provides “A” with something I can’t give him at home…the social experience away from me. He can’t rely on me to make it work for him. He has to reach out and do it himself. We can support him in doing that but he is doing so much of it on his own. It is hard to let go sometimes, but seeing this video reassures me that he is stronger and more capable than I think (even if he is only 2 and 9 months).

I just want to yell to the world how proud I am of my “A”. I want everyone to know what he is overcoming and how perfectly amazing his is! I love you “A”…GO! GO! GO!


Overwhelmed

Sometimes, I feel guilty that “A” only has mild autism when I know so many people who’s children have so much more than mild.

That word “only” feels silly in that sentence. Autism is autism and every child is different. Each child and family have their own struggles. But I still feel guilty when I am having a hard time or I am crazy with fears and worry. It could be worse, and I know that, and I feel like I should spend my time being grateful that our struggles aren’t too severe.

But just because “A’s” symptoms aren’t severe doesn’t equate to “no struggles”.

Ever since the incident with “A” and the forklift I have been in a very down place. My worry has increased. My fear has increased. I am second guessing every single thing we do. And I feel like every day autism kicks me in the face and laughs.

But it just isn’t “A’s” struggles. “B” also has struggles, they are just completely different. I have two children, they are 2 years 8 months (almost), and they both have special needs. My whole day revolves around therapies and making sure I am working with each of the boys on his specific goals. At the end of the day I feel like I have never done enough. I see that invisible window that the therapists and doctors all talk about. I see it in my mind and it is closing and I have to hurry and do as much as I can before it shuts. Early intervention is the key! Push Push Push! I am assured that the window of opportunity is much bigger than I think it is and that it isn’t closing any time soon. But I can’t let up.

I see “A” struggle to connect. I see “B” frustrated because he can’t make himself understood. The tantrums are getting worse and I know part of it is because they are 2 years 8 months old. But I know part of it is frustration at the world. “A” is frustrated because “B” messes up his lines. He is frustrated when we change up the expectations because it is time to take it a step further. He is frustrated because I am not doing it right. Only…I don’t know how to do it right because his little mind sees things differently than my mind. “B” is frustrated because I say no. He is frustrated because he is trying to tell me something and I am desperately trying to decode his gestures and sounds and figure out what it is he saying. He is frustrated because I can’t and he gets angry and gives up.

Our speech therapist assures me that my worry over not doing enough means that I am a concerned and involved parent. That I want the best for the boys and that I am trying so very hard to do all the various things for each of them that need to be accomplished.

Mostly I feel like no matter how much I do it will never be enough. I can’t make the autism go away. I can’t fix the connections inside of “B’s” head so that all those words inside can finally get out.

I am teetering on the edge of the cliff and I feel like I might fall at any moment. I have two little boys who are quickly closing in on 3 years old and neither one of them can hold a preschool conversation with me. Sure we communicate with the few words we have, with gestures, with pictures and signs. And I am pretty good at anticipating their needs since we live on a pretty inflexible schedule. But I really wish they could talk to me like other almost-3-year-olds. Yesterday or the day before “A” was upset and I asked if he was mad. I knew he was mad but we label everything and encourage them to understand. Through his tears he said “Yes….mad”. I have no idea if he was just mimicking my words or if he was finally able to have a word to express himself. Very few of “A’s” words are spontaneous words. Usually they come from a prompt, like when I ask if he wants an apple or pear and he looks them over and says “bapble”. Or when he drive through every single intersection and the light is green and he sees the green light and says green. All labels. No requests. No expression of opinion. Not really anyway. And then there is sweet “B”. His preschool teachers swears he said trashcan (the word of the week at preschool). He struggles to say the word “bus”. I have to prompt him and then he can get out “bu” and “s”…but always with a pause in between because his motor planning won’t allow the sounds to flow together to actually form the word. I know he didn’t say trashcan. I don’t blame her. I think she just got him mixed up with another child. Our play therapist said she almost made that mistake on Thursday because there is another little boy in class who sounds very similar to him.

The thing is…special needs…whether severe or mild…are a roller coaster of emotions. The bad days are worse but the good days are more sweet. Sometimes it feels like a year ago that “A” was diagnosed. In reality it has only been two months.

I told the speech therapist that it is a bad time right now for me. I told her that I don’t think I have really dealt with the emotional part of everything because I have been so focused on helping the boys. The funny thing about emotions is that you can only push them aside for so long. One day you have to deal with it.

You know that cliff I mentioned. I know I won’t fall over the edge. Even as I stare out into the void I feel the strength of 4 little hands tugging me back…keeping me from falling. I will never fall because they are there…holding me steady. They are my strength. And even at the worst moments, when I feel the most lost and overwhelmed and scared…it only takes a hug and/or a kiss from one of my precious boys and everything is okay again. At least until the next time. But it is okay because you can’t run out of hugs and kisses.