Archive for Evaluations

Our Son Had Asperger’s Syndrome…

June 4, 2012 Asperger's syndrome, Autism, Behavior, Evaluations No comments

And now, apparently, he doesn’t. We had the unofficial diagnosis from the school district for about 6 months before the developmental pediatrician told us he doesn’t meet the criteria. The school still uses the diagnosis as a basis for his services, but they have voiced their uncertainty to us as well. He’s three years old, so we don’t really know if any label will eventually stick.

Having the ASD diagnosis was scary and uncharted territory for us, but having the diagnosis taken away six months later makes the territory even less charted! Our son still presents with many of the signs of Asperger’s. He’s getting OT, sees a social worker, and will begin a speech group as soon as we can afford it. His behavior at home is troubling, frustrating, and we don’t know how to deal with it. We don’t even know if there is a “cause” for it – such as Asperger’s (or something else).

I know that labels don’t mean anything and that my son is complex (as every person is) and can’t be completely described by a single word like Asperger’s. But in some ways, labels do matter. Labels get you more services. And labels get you acceptance into a group. I don’t fully fit in with the “typical” moms; the issues we deal with are not the ones they deal with. But I kind of feel like we’re on the fringe of the ASD community – are we in that group? Do we need to be? Does it matter?

Who knows. All I know is that my son has struggles. And we are going to help him with those struggles however we can and for however long it takes because we love him and we know how much potential he has. And I guess that’s what really matters in the end.

 

Evaluation by the Developmental Pediatrician: Not on the Spectrum…For Now

April 20, 2012 Evaluations No comments

Buki having fun with a photo app

Back in February, we went to a developmental pediatrician to have Buki evaluated for Asperger’s. That’s what the school told us was going on, so we decided to do an official eval.

I wasn’t super impressed with the pediatrician, but she came highly recommended. She did a test with a book and then played with Buki. I know she has to stay a little removed to see what his reactions would be, but the play session was painful to watch because of her, not my son. She made no attempt to make him feel comfortable, and as a result, he just stared at her when she attempted to engage him. I remember thinking that it seems like she’s never spent any time around kids, which can’t be true, as she does this for a living.

At the end of the assessment, she told us that her initial feeling is that Buki is not on the spectrum, but she wanted to do a more thorough evaluation with the help of a psychologist. So we made an appointment to come back.

Our second appointment was more of the same. More testing, more awkward playing. This time a psychologist did a test. I liked her even less than I liked the pediatrician. She made no attempt to make my son feel comfortable. She wasn’t all that friendly. And then after the test was over she tells us that our son has anxiety. Well … that may be true, but part of it was her demeanor toward him.

After everything was over, they told us that he is not on the spectrum. They see several behaviors and symptoms of Asperger’s, but not enough to call it Asperger’s. He’s close to the line, but apparently not on the spectrum. Though it’s a close enough call that they want to see him again in six months.

I should have been happy about it, but I wasn’t. I thought they were wrong. They don’t spend time with him day in and day out. I thought he had Asperger’s and that they were wrong.

Now? I just don’t know. He may or may not be on the spectrum, and we may not have a definitive answer for several years. But the important thing is to treat the symptoms and get him help, and the pediatrician agreed. We now have prescriptions for occupational therapy and speech therapy. Choosing a therapist is another story, but at least we’re moving forward.

Early Symptoms of Autism: What You Need to Know

February 10, 2012 Asperger's syndrome, Autism, Evaluations, SPD No comments

Photo by hepingting, Flickr

This topic is near and dear to my heart, as we have been struggling for nearly three years to discover if our 3-year-old has autism or not. It’s been a long journey that isn’t over yet (we still don’t have answers), but because we knew some of the early symptoms of autism (and didn’t take no for an answer), we were able to get early intervention help for Buki that made a big difference for him.

If you are a parent wondering if your child has autism: welcome. You are among friends. It can be scary and daunting to think about the possibility, but your child will remain your amazing wonderful child, whether there’s a label like “autism” attached or not. But the thing about autism is that the earlier it is treated, the better it is for your child. So it’s best to know and do something about it as soon as you can.

I’m going to first list the more “obvious” early signs of autism that you might find on any website. But then I’m going to share some of the more subtle signs we saw in my boy that clued us in that something was going on. I hope it helps!

If you see some of these signs in your child or you have worries about your child’s development, please take action! If your child is under 3-years-old, contact the Early Intervention program in your state (if you don’t know what yours is, this Early Intervention Contacts page should help). If your child is over three, contact your school district. These two resources will test your child free of charge and then help you treat your child if it is warranted.

Here are some of the main symptoms of autism in toddlers and babies:

  • Not smiling or happy expressions by age 6 months
  • No interaction back and forth with caregivers by sharing smiles, sounds, or facial expressions by 9 months
  • Not responding to his/her name by 12 months
  • Not speaking words by age 16 months
  • Not using two-word phrases by 24 months (repeating words back to you doesn’t count – it must be a meaningful interaction)
  • Doesn’t make eye contact with you
  • Doesn’t point at objects or wave goodbye
  • Doesn’t try to get your attention or respond to your attention
  • Doesn’t imitate your facial expression
  • Has a loss of speech or social skills

 

So those are some of the big indicators. But here’s the thing. My son, did most of those things listed above. He was, in fact, hitting milestones early. He was talking up a storm by the time he was 15 months old. And he did interact with us and smile and make eye contact with us. But we still knew that something was off. Here are some of the things we did notice about our boy that clued us in to the possibility of autism:

  • He did eventually learn how to wave bye bye, but we had to work with him pretty strongly on it, and it didn’t seem to come naturally to him.
  • He ignored us a lot. He did respond to his name, but only after calling it several times.
  • At around age 1, he stopped smiling. Before then, he was the smiliest baby in the world. But at age 1, he became serious and austere.
  • He had some “sensory” issues: He was deathly afraid of anything that made noise – the vacuum, the blow drier, the blender. This lasted LONG after most kids get over it (as in, he’s 3 now and still runs from the room when I pull out the vacuum). He also had to touch anything that looked like it had a texture. He climbed all over us and banged into us, so much so that I could tell he needed to do it.
  • He could speak a lot of words (by 18 months he was saying over 150 words), but we noticed that he wasn’t really interacting with us verbally very much. We would ask him a simple question and he would totally ignore us.
  • We also noticed that he was memorizing books and cartoons. At around 20 months, he could repeat back verbatim a Sesame Street skit he saw a few days ago.
  • Also around 20-22 months, we noticed that he had memorized the entire alphabet and could not only recognize each letter, but also knew some of the sounds they made. We never taught him or coached him on this.
  • His obsession with numbers and letters became…all-encompassing. At about 24 months, I would take him to a grocery store, and he pointed out every single number and letter he saw.

 

These are some of the main autism symptoms in toddlers that we saw in our boy. We weren’t at all sure that these things meant autism, but we didn’t want to take any chances. Early Intervention came and evaluated him at age 2, and although they didn’t diagnose him, they provided us with speech therapy, occupational therapy, and a lot of support. We saw many improvements in his speech and development that year, and we’re very thankful we called the Early Intervention team – despite what my doctor said, “He’s fine.”

Don’t listen to friends, family, or even the pediatrician if you suspect a developmental delay in your child. Listen to yourself. Nobody knows your child like you do. And the earlier you seek intervention, the higher chance you have of making a huge difference for your child. If you suspect your child may be showing some of the early symptoms of autism, seek help immediately. Call the Early Intervention program in your state for under 3 years old, and call your school district for 3 and up.

Evaluation by the Developmental Pediatrician

February 1, 2012 Asperger's syndrome, Autism, Evaluations No comments

We are taking Buki to the developmental pediatrician this week to finally get his formal diagnosis. I have so many different emotions right now.

First, it’s a relief to finally get this done. We’ve been waiting for months for this to happen, and we’re seeing the best doctors Chicago has to offer. That is comforting. It’s also great to know that we can finally get therapy started.

But also, it’s daunting and scary. I still hold onto that far-fetched hope that the school was mistaken and that a doctor will tell us it’s not autism at all. I know, it’s a long shot, and deep down I’m pretty sure it is. But I can’t deny that feeling is there.

With all of it comes worry as well. How will we afford to pay for all this therapy he desperately needs? How do I ignore all my fears about what the future holds and just focus on one day at a time? I love my son so much. He is one of the sweetest, brightest, and funniest kids I know. I just want the world to see that too.

The evaluation takes place Thursday morning. So if you’re a praying person or want to send positive vibes our way, it would be appreciated. Here we go.

Our first school IEP

November 2, 2011 Autism, Evaluations, IEP, School System 4 comments

We recently had our 3-year-old son Buki evaluated by the school system here in Chicago. (Actually we’re in a suburb and we purposely chose it for the quality of its school district, and I’m thankful we did.) Last Friday we met with the school district for the IEP meeting. I was so worried that they were going to deny him services and that we would have to fight them.

My husband and I arrived for the meeting and there were at least 8 other people there. It was intimidating, but I was glad that they were willing to have so many people meet with us about our son. They quickly went over the results from the evaluation (including the fact that they believe he has Asperger’s Syndrome).  At the end of that, they talked about the things that qualified him for services. At that moment I felt so relieved. They agreed with us!

Then they talked about placement. There’s a bigger Pre-K that they were thinking of putting him in, but it would be 20 students and two or three teachers and aids. I originally thought I would want him to be with his typical peers, but after hearing the description, they just didn’t sound like the right fit for him. He needs more attention and direction than that.

Their Early Childhood preschool has 5 other students in it. There is a teacher and two aids. In our meeting, the teacher said, “We can help him. I’m already thinking of ideas for him!” I almost started crying – these people actually care and want to help my son. I could feel it, and it just warmed my heart. We all came to the conclusion that for right now, Buki needs the Early Childhood preschool.

In addition to preschool, he’ll be getting some OT and speech therapy each week as well. They are offering him everything I had hoped  they would and then some. And the fact that I feel how much they care about Buki…my eyes started welling up with grateful tears during the meeting. I don’t know if they can possibly understand how amazing it is and how different from our experience with the school district in Georgia. I am very thankful to be here in Chicago where we can get my boy the services he needs.

School Evaluation in Chicago

October 9, 2011 Autism, Evaluations, School System, SPD No comments

My son, Buki, turned three in August, so he aged out of the Early Intervention program. Back in February, the school district in Georgia evaluated him. The results were not acceptable : They told us he didn’t qualify for services. We tried to fight them, but we moved to Chicago in August, so we eventually gave up the fight in Georgia.

Here in Chicago, we finally had his school evaluation through the district on Friday. It was an overwhelming, interesting, and good experience. The evaluation was very thorough. We had filled out a very detailed questionnaire before arriving, and they asked many clarifying questions about it. They spent an hour and ½ observing my boy, and they even brought another little boy in to observe how he did with a peer.

On the parent questionnaire, I had mentioned that autism was a potential concern. That word has been in my thoughts off and on since Buki turned 18 months, but we’ve never had a definitive yes or no. In fact, most people lately had given us the idea that autism was off the table – we knew that SPD was probably a diagnosis (though we didn’t even know that for sure), but autism seemed unlikely.

The evaluators gave us a detailed checklist for Asperger’s. And to my surprise, almost every answer was, “Yes.” At the end of the checklist and after observing our boy, the psychologist stated, “He falls somewhere on the spectrum.”

I was shocked, to say the least. I wasn’t prepared to hear it. Even though I’d been wondering for almost 2 years if it was the case. Even though back in the summer of 2010, I cried and cried for days because I was sure my son had autism. It still didn’t make it easy to hear it out loud from a psychologist.

But the silver lining is that the school sees the same concerns we do, and I’m hoping they will offer some good services and interventions.  He really needs the help. I’ve already turned into my obsessed mom mode and have gotten tons of books and videos from the library to help me learn as much as possible.

And now that a couple of days have passed since the evaluation, I’m still feeling so many emotions. I feel validated, finally, that my concerns for the past two years weren’t just me being a helicopter mom who freaks out about issues that aren’t really there.

I feel sad and worried about my boy’s future. Will he make friends? Will other kids make fun of him? My school experience was horrible enough without a disability (well, unless you include social anxiety disorder as a disability, which should be one!), so I just can’t imagine what it’s all going to be like. I’m a worrier.

My husband, on the other hand, was great. After the eval, he just said calmly to me, “We already came to terms with the fact that our boy is different. So this doesn’t change anything.” Which is technically true. But hearing the label…just kind of shocks you.

We do wonder who we should tell about this, though. Do we keep it to ourselves? Do we tell the people who may benefit from knowing (babysitters, parents of his friends, etc.)? I just don’t know.

Anyway, in two weeks we’ll have a full report on their evaluation and what services they recommend. I’m praying for good news.

Meeting with the School District

May 25, 2011 Evaluations No comments

We finally had our meeting with the school district since we disagreed with their initial evaluation of our son. They didn’t feel he qualifies for services. It didn’t go as planned. We intended to go in (my husband and me and Buki’s speech therapist) and request that the school pay for an outside evaluation.

First off, our speech therapist couldn’t make it, but we went ahead with it anyway, since time is really of the essence here (we’re moving in a few months.) It was a little daunting walking into the meeting, because there were about six school attendees and we were expecting only two.

And I was scared. I’m not a “speak up” type person, but I knew I needed to take the lead – my husband was there to be backup. So I boldly stated that we didn’t agree with their evaluation, the reasons we didn’t agree, and that we were asking for an outside evaluation. I felt awesome.

Of course, they shot us down immediately, stating that they can’t provide an outside eval until he turns three. The eval was the whole purpose of meeting with them, so I honestly stopped listening very hard after that. Blah, blah, blah, and then the meeting was over.

They gave us a few tips; things we can do to help our son. But the bottom line is that they do not care to do anything until he is three. And by then, we’ll hopefully be in a school district that actually cares and will help us. Barring that, we’ll at least have decent insurance, so we can finally get him tested on our own or get him private occupational therapy.

We’re moving to Chicago in August, when Buki turns three, so we’re now going to turn our energies toward figuring out services in Chicago. That’s going to be quite the adventure, I’m sure. I’m not looking forward to all the phone calls, but I am looking forward. We are ready to move on from our current city and ready for what comes next.

Disagreeing With the School Evaluation

May 9, 2011 Evaluations No comments

I decided to post an update, because it’s been a while. A while back, I posted about how our school evaluation showed that our son didn’t qualify for services from the schools. (Close, but not quite.) He’s going to turn three in August, so he ages out of the Babies Can’t Wait program. His speech therapist was shocked to hear that he doesn’t qualify for services.

After thinking about it and getting some advice and support from twitter friends Jillsmo, Jen, and bloggers  Jennie B. and  Thankful Momma, I decided to fight the school on this. So with the help of our Babies Can’t Wait advocate, we learned that we needed to make an appointment with the Special Education director, and then let her know that we do not agree with their assessment and would like them to pay for an outside evaluation. By law, they must either pay for the outside evaluation or prove in court why they should not have to.

We are meeting with them in about two weeks, and I’m terrified! I am not very good at standing up for myself. Our advocate says she wants us to be a broken record and just keep asking for the outside evaluation. I can see myself backing down, though, and I can’t do that. My husband is very similar. When door-to-door salespeople come to our house, it’s me who has to turn them away; otherwise, we’d be pushing around a $2,000 vacuum while watching religious video sets.

And it’s a complicated situation. My boy turns three at the beginning of August. We are moving out of the state very soon after that. The school knows this (we didn’t tell them, but somebody did.) I worry that they will claim that since he won’t be in their school system, then why should they pay for the evaluation. But we move to Chicago right after my boy turns three. So there won’t be much time to get him tested and situated before the school year starts there.

So I’m just a little bit nervous. It’s up to my husband and me to advocate for our son. He can’t do it. And he deserves to have whatever services he needs to help him grow and develop properly. I’m scared, but I know I have to do what it takes! Our little boy is so worth it!

The thing is, though, is that his issues are SO hard to see, and even harder (apparently) to test. He has a phenomenal vocabulary. He even gives appropriate answers a lot of the time. But something I’ve learned is that he has memorized tons of dialogue from his “shows” on tv. And he uses these lines instead of his own words a lot of the time. But how would an evaluator know that?

And even I have started to think that maybe he’s doing ok and there’s nothing to worry about. But what brings me back to reality is when I see what other kids his age can do or are willing to do. His rigid adherence to his own “rules” makes it so difficult to do fun things with him or take him places. Once he starts something, he doesn’t want to stop. Once he’s tried something one way, he will not deviate from it, even though I try so hard to get him to branch out. He won’t let me brush his teeth. He doesn’t want his diaper changed. He has no interest in potty training – he freaks out and fights me when I suggest using the toilet (even though he is very capable of it.)  He doesn’t want to get dressed for the day. He doesn’t want to get his pajamas on at night.

Maybe he’s just a willful kid who will grow out of these quirks. And that would be awesome. But maybe it’s something else. So I am praying and crossing my fingers that the school just agrees to an outside evaluation. You can add your positive vibes too, if you want.