"The" meeting....and our weekend.

Yesterday I had "the" meeting with the school district about Dylan's IEP.  I was very relieved that I had a parent advocate with me from WI Facets.  I couldn't believe how nervous I was going into this meeting.

We weren't asking for major changes to his IEP.  We were not comfortable with the way that parts of the IEP were written.  At his meeting on April 20th, the team determined that Dylan have an aide available 33.5 hours a week (which is basically "Bell to Bell") was appropriate.  When who ever looks over the IEP's downtown wasn't willing to approve that, we talked about them leaving the IEP as it was but adding in that there would be a review of services at the end of the 1st quarter (November).  We were perfectly fine with all of that.

What we weren't feeling good about was the fact that it was written in the IEP that on November 8th (1st day of the 2nd quarter), Dylan's aide services were to be cut in half.  We never agreed to that.

As the meeting go started yesterday, I made it clear that we had no issues with meeting to review his services in November but we needed come up with a better way to write the parts about after the 1st quarter. We also wanted something added that would make it clear that we would review all 3 areas of aide service: in the classroom, in specials and transitions/recess.  There is also the possibility that not all areas will have the same amount of service after the 1st quarter......we wanted it to be clear that just because we could determine that there is one area that we decide to change services in but others need to stay the same.  It was a lengthy discussion and I felt like we went in some circles before everyone was on the same page.

I am not waiting to get the "final draft" of his IEP to look over before it's officially final.  I was not going to sign anything yesterday until 1) I can show it to Jason and 2) I can be sure that all the changes we talked about are made and 3) the advocate can also look it over.  I'm pretty sure the team wasn't real happy that I wouldn't sign yesterday but one thing is for sure, this whole "thing" with D's IEP has opened my eyes.  Kira's IEP's have always been fairly straight forward....his, not-so-much.

In other news... :-)

We were in Iowa over the weekend and went to a family picnic on Saturday.  I was absolutely SHOCKED at how well Dylan did.  He was interacting with people APPROPRIATELY and really enjoyed himself.  I have no doubt that his meds are really working and we are seeing some very positive results!  YEAH!

I know this is how it goes.....

But I cannot even put into words how frustrating I am finding things lately.

Just when I dare think that things are "evening out" and getting easier, we have a couple of days like we have had yesterday and today and it's a smack back to reality.

I really thought that things were getting easier with Dylan and we were seeing a more consistent, positive behavior pattern.  I know that this isn't a sprint.....it's more like a long distant journey with hills and valleys.  I get that but it's so frustrating.

Dylan has been very defiant the last couple of days and very in everyone's space and face.  It's been challenging at home and it's been challenging at home.  I feel very much at a loss right now as to what to do.

I feel like I am in a constant state of trying to figure out what triggers what behaviors and right now, I feel like that's looking for a needle in a haystack.

Don't get me wrong.....we have seen some great changes since starting the Risperdal with him and I am so very thankful for that.

Tomorrow is a new day.

Autism in Reverse

I absolutely LOVE this!!

Patience is not always my strong point....

I'll just admit that up front.

I am trying my hardest to be patient as I wait yet again to hear anything....something....about Dylan's IEP. I feel like I shouldn't really be shocked that we hit this blib in the road but sometimes it does just shock me.  But with my next breath, it doesn't shock me one bit.

I have made it very clear that I will NOT under any circumstances agree to ANYTHING verbally...NOTHING.  I don't think that made some people very happy but it's not my job to make them happy.  It's my job to make sure that Dylan has services in place when school starts in the fall.  I have also made it clear that I am aware that I am more than in my rights to not send him to school until we have an IEP in place.  Again, I don't think that made some people very happy but it's the truth and I will NOT be sending him without a very clear IEP in place, officially.

What has been proposed to "them" is that we leave Dylan's IEP written the way that it is through the 1st quarter of school and then meet to re-evaluate if he needs the services that we wrote for at his IEP meeting 3 weeks ago. 

I am fine with this.  I don't like the fact that there will have to be an extra meeting, both for me and for the school staff involved who are already busy, but if it's what we need to do, we'll do it.

Stay tuned.....more to come, I'm sure! :-)

"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)