"They" have never laid eyes on him.....

But yet "they" can say no to the IEP that was written.  "They" can say that he can't have that much aide time.  "They" can say that he may not even need that much OT.  But "they" have never see Dylan anywhere but on paper.

"They" make me really mad.

I got a call this morning from one of the people on the team that did Dylan's evaluations and she said that "they" wouldn't approve his IEP as it was written.  Sigh.  She had talked with the principal at our school and he had also gotten a call regarding Dylan's IEP.  "They" strongly feel that Dylan doesn't need the services that we wrote in his IEP.  The principal still feels that he does.  He is concerned about the safety concerns....,not something to be taken lightly.  

But ultimately the truth is that we don't know how Dylan will do when he starts kindergarten in the fall.  Maybe he WILL surprise us and do better than we expect.....but what if he doesn't?  What if our concerns are right on track?  What if he does try to run and he doesn't have someone there to stop him?  That is a "what if" that I cannot and will not take lightly.  I will not just "wait and see."  Fortunately, the principal feels the same way but that will only get us so far.  "They" do have final say.

What is our compromise that we hope "they" will approve?  And that we hope "they" will see as a compromise.......

Leave his IEP as it is written for the 1st quarter (November sometimes), meet and re-evaluate to see what everyones thoughts are then.

I wish so bad that "they" could see this from where I sit, as his mom.  It sure feels like they don't have Dylan's best interest at heart.  It sure feels like "they" are more concerned about the $$$.  It sure feels like "they" are looking at her academics and saying that there is no problem there (at this time).  

Nothing would make me happier than for him to start school and do worlds better than we anticipate.

I am "just" a mom who needs, not wants, NEEDS to know that when I leave my 6 year old on the first day of school he will be  safe.  I am not a mom who is looking for services that her child really doesn't need because, you know, having kids with special needs was exactly what I had dreamed of when I thought about having kids.  I just NEED to know that when I have to let go a little more than I am really ready to do, that Dylan will be okay.  That Dylan will have his needs met, whatever they may be.

I am "just" a mom who loves her little boy, challenges and all, more than life itself.  I am "just" a mom who knows that "they" don't know him.

What "they" may not know is that I'm "just" a mom who will fight to be sure that Dylan is safe, happy and secure where ever he is and that I won't just sit back and say okay to what "they" think is best.  I am his mom and I know him best.

"They" will know my name and face if needed because I am ready to fight.

FINALLY!!

I had Dylan's meeting with the school district on Friday.  I will be honest, going in, I was scared.  I was really worried that I would have a surprise and they would decide that he wasn't going to qualify for services.......well, luckily, he qualifies for services.  Whew and double whew.

His amazing 4K teacher had taken the time to fill out some paperwork for the evaluation and I had filled some out as well.  I was AMAZING how close we were when they scored it in almost every area.  They couple that we were a little further off still weren't far and they were areas that they expected that.

I was impressed with the principal and how seriously he took our concerns that Dylan is a runner when he gets upset.  His comment was that "he needs to have someone stuck to him like glue on the playground" until we know exactly how he is going to react to situations while at school.  When we got to the last section of the IEP where we talked about what services he would be getting, his principal said that he wanted him put down for 33.5 hours with an aide available in his classroom.  I have a feeling that HE may have to fight for that one a bit but he was pretty firm that he felt strongly that's how it needed to be put down for D.  I'll be curious to see how it's exactly worded when I get the IEP or if I get a call about that one in the next week.  He will also be getting 90 minutes of OT time each week....about 60 minutes of that will be in the classroom and used for transitioning back into the classroom after his 30 minutes of pull out therapy.

Several people have asked what kinds of goals we set for him and how that is going to work since we're basically writing an IEP for next fall only "guessing" how he's going to react to certain situations.  Honestly, I can't remember what they all were right now since, if you've been to an IEP meeting you know that we talked about A LOT of stuff in that 2 hours.  I know there is a goal for OT, safety, calming himself, behavior and ????  I will do a post with more details about all of that when I have the IEP in hand.

I also found out that the kindergarten teacher who was at the meeting is also going to be his teacher next year and honestly, I could have cried when I found out.  Kira had her for the 2nd half of the year and I just loved her.  She has a very structured classroom and already uses a lot of visual aides for her students which D really does well with.  He'll also have the same OT that Kira has had since she was 3...he knows who she is and really likes her.

Overall I feel REALLY good about the plan that have in place.  It's very possible that once he gets into the classroom and the year is underway that we could find that this IEP or the goals just aren't appropriate.  If that happens we'll have to meet and re-do things.

But just having a plan in place and them being aware of our concerns makes me feel a lot better.

20 Facts about Asperger's......

Children with Asperger's Syndrome often struggle to fit in at school and other social settings. While there is no cure for their condition, they can be trained to cope.

Understanding the implication of Asperger’s Syndrome can bring a greater level of tolerance and acceptance for those with the condition. Here are some traits and behavior patterns commonly seen in the syndrome.

• Most people with Asperger’s Syndrome are of average or above average intelligence.
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• They have excellent thinking skills where things are concerned but are extremely poor at interpreting human relationships.
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  • Intense preoccupations often centre on certain toys or areas of interest. Common obsessions are dinosaurs and forms of transport and how they work.
  
  
  • They will often seek out other people to talk to about their interests. The conversation is usually one-sided – more like a lecture where they talk about their knowledge and aren't interested in feedback.

  
  

  • Older children may enjoy a club that is focused on their interest – for example, coin or stamp collecting.

  
  

  • Eye contact is not understood or made use of.

  
  

  • The child may appear cold and uncaring but it is not deliberate. He does not think about others and cannot understand the social graces that keep society functioning.

  
  

  • It is possible to teach social skills but it is a long slow process and often requires parental intervention to repair social damage when they act inappropriately.

  
  

  
  

  • Short stories can be useful in teaching social skills. Use one page visual aids that teach about listening to others and keeping quiet and still while they talk.

  
  

  • Children with Asperger’s Syndrome prefer routine and structure and can become irritable and distressed if the unexpected happens.

  
  

  • Gross and fine motor skills are often underdeveloped, causing problems in sports and balance.

  
  

  • Asperger’s Syndrome is often detected when a child starts preschool. He will generally interact better with his teacher than his peers and may display silly, loud, aggressive or socially withdrawn behavior.

  
  

  • Things are interpreted very literally, meaning that sarcasm, playful teasing and figures of speech are not understood.

  
  

  • Rules are very important and a child may become angry if a game is not played fairly or his peers break school rules.

  
  

  • On a positive note, this aversion to rule-breaking means the Asperger’s Syndrome child is less likely to experiment with smoking, drinking, drugs, and sex as he matures.

  
  

  • Many children are perfectionists and struggle if they fail to produce perfect schoolwork. Encourage them to move on, and create distractions if necessary to get them to continue working.

  
  

  • They find it hard to generalize. If taught that they shouldn’t hit a child at school, they do not automatically make the connection that they shouldn’t hit a child in the mall.

  
  

  • Children with Asperger’s Syndrome express their feelings in unpredictable ways. Sometimes they may seem emotionless and other times they may display extreme emotion that is not appropriate to the situation.

  
  

  • Interrupting conversations is a common problem as the child does not understand the social signals that allow conversation to move from one to another.

  
  

  • A child can be helped if parents consistently work with him and highlight his strengths and work consistently on his weaknesses

  
  

  
  

  There is hope for children who have Asperger’s Syndrome and with training and support from their family and health professionals, they can live meaningful, productive lives.

  
  

  (By Debbie Roome)

Some frustration, some positive and some sweet....

Last night was D's last night of the med that we were trying........and while I am glad that we are done with that medication, I am also realizing that even with all the "bad" that came along with it, there clearly was some positive.  Not nearly enough for us to even think about putting him back on it but to say that the last few days have been challenging would be an understatement.  I feel like he has no control what-so-ever right now and it's testing my patience to no end.  Add to that me not feeling well and today has not been a great day....for either one of us.

I am trying so incredibly hard to keep my cool because I know that me losing my cool is NOT going to help one bit and will ultimately only make things worse but it.is.hard.  He seems to know what buttons to push and just how hard he can push.

A positive though.....

This weekend while we were in Iowa, I was able to figure out a couple more "signs" that he is getting over stimulated and needs a break.  Believe me, it takes awhile to get him back on track but I think that as we figure things out a bit more it will be a good thing for him and also for us.

What did I figure out?

Well, as he's getting closer and closer to the max of what he can handle with noise, commotion, disruption of his routines, his ears and cheeks get redder and redder and he starts pacing........reminded me of a caged animal to be honest.  One of the times it happened, J took him downstairs where it was quiet and another time I took him back to a bedroom and we snuggled for a bit.  It was rather amazing to me to be able to really watch him while we were out of the commotion.....his whole body changed.  I could just see him relaxing and his mood changed before my eyes.

These are things that are taking awhile but we are slowly figuring out his cues, even when he can't.

One very sweet moment this weekend with him was during the Easter Egg Hunt that he was soooo excited about doing, I might add.  Whenever he found a pink egg, he would run to wherever Eva was and give it to her.  When I asked him why he was giving her the eggs, he said, "Mommy, pink is her favorite color don't you know!"

Man, I just love my boy!!!

I wanted a longer fuse.....

I wanted just a little more time to intervene.  I wanted just a little more warning before a meltdown started.  I wanted time to use some different strategies to prevent a meltdown.

I didn't want a Zombie.  I didn't want meltdowns that are getting more physical from my Dylan.  I didn't want a boy who doesn't want to go do martial arts because he's too tired.  

Needless to say this first medication we tried is a no go.  We are one the process of weaning him OFF it now.  He'll be done with this one on Sunday.  

His psych has encouraged was to try another med and we will.  We are hoping to start it Monday so that when we see his psych in 2 weeks we'll (hopefully) have some idea of if it's working or not.

I know how effective medications CAN be.  We've had great luck with Kira's anxiety being manageable because of the medications that she is on....but we had trial and error to get to where we are with her.

Please understand that I understand that there are some people who don't agree with trying medications with kids.  And in all honesty, I used to feel that way.....that's the biggest reason we waiting so long to start Kira on medication for her anxiety but I know for a fact that Kira would NOT be able to function in school without medication.  I just wouldn't be possible.  Please understand that this is not an easy decision for a parent.  NO parent WANTS their child to need medications just to get through the day.  I know that medications can help and we owe that to Dylan.  He is not a happy child so much of the time.  His world is not a happy place and I know that he doesn't want to be feeling the struggles that he does. He struggles to figure out so many things each and if we can help him find a calm, we will.  I want him to NOT feel stressed and anxious each day.  I want to have the time to talk to him before he explodes.  I know that he doesn't enjoy it and neither do I.

We need to find a calm first and foremost for him......but also for our family.