A perspective on the world of disability from a mother and an educator. Follow my blog!

Thursday, 24 January 2013

The ABCs of IEPs.

So, the school year hasn't even started and we've already had our first IEP meeting. As far as IEP meetings go, it wasn't too bad. But it could have been a lot better too. I'm fortunate to sit directly on the fence and it's not nearly as uncomfortable as you'd think! Yes, it can be tricky to balance some times but it's getting better. 

The reason I am so fortunate is that I'm not just a parent of a child with a disability, but I'm a special education professional. I consider myself to be an advocate, a loud one at that. I have insider knowledge. Sometimes (most times) more than the educational professionals I am working with. I want to share what I know for one sole purpose - so that those who don't have a voice, a clear voice, can still be heard. I desire to educate educators and to empower parents.

Difficulties arise when the fence I'm sitting on changes. Some times it's like a nice wide wooden handrail. almost comfortable to sit on. It's easy to go from the parent side to the professional side. When the relationship is like barbed wire, it's not such a comfortable place to sit. I hope your fence isn't like barbed wire, regardless of whether you sit on it like me, or are firmly planted on either the educator or parent side.

Before you start your school year, here are some tips and insider knowledge about IEPs. I hope it helps.

1. The whole IEP process is a collaborative one. It's not a matter of the school telling the parents what's going to happen. The idea is to get consistency between home and school (and if you're anything like us, multiple therapy providers as well!). There is no hierarchy of people who have degrees above parents. As a professional, I've always considered the parents as the most valuable source of information. No one know their child like they do, no one else coordinates services like they do. If you don't feel consulted, speak up. Your voice is an important one.

2. IEPs are directly linked to funding accountability. If it's in the IEP a school can justify spending money on it. As such they need to be written in a particular way. Goals MUST be measurable. The acronym we use is:

 S  specific

  M   measurable

  A  attainable

  R  relevant

  time bound

The measurable element is one of the most important.  Saying they 'have difficulty with', 'will improve', 'will use appropriate language' or ' will understand' is vague and unhelpful. Also, make sure the goal is specific. 'Tommy will improve in maths' doesn't tell you anything. 

Giangreco, M. (1998).  Ants in His Pants: Absurdities and Realities of Special Education

3. The goals need to relate specifically to the impairment category.  If it's an intellectual impairment you can expect to see some curriculum goals. If it's ASD then social or communication goals would be appropriate. Any participation goal should be linked directly back to the impairment.

4. If there are any specialists or therapists helping out, then their reports should be consulted when writing the IEP. Better yet, can they attend an IEP meeting or speak directly to the classroom teacher or SE teacher before they review the IEP? If your child is attending more than one facility or service, there is still only 1 IEP. Consistency is the key.

5. An IEP does not replace the national curriculum (which in fact supports our kids very well, but that's another blog!). It's not like a Bill of Rights in that what is written into it is exhaustive and final. It is an opportunity to focus efforts. There should be no more than 5 or 6 goals, sometimes as little as 2.  Again - these should be specific to the impairment category. 

6. It's the frequency and intensity of adjustments that determines the funding, and these must be an accurate reflection of what happens in the classroom. Ask what level of funding your child receives.   It will be either level 2, 3 or 4 with the highest level of funding going to level 4, and this is usually for children with multiple impairments or a completely alternate education program. Level 4 gets about $10, 000 and let's face it, that doesn't pay for a quarter of a full time teacher aide. (This is correct in Qld, funding may differ in other states, but you are entitled to ask how much, and how is it spent).

I hope that all this helps some. If you want to know something specific, just ask. Ask me, ask your school, ask your therapy providers, ask other parents. What matters is that we give those who need it a voice. Speak up. I always tell the parents I work with that 'the squeaky wheel gets the grease'. You are entitled to be heard, and given the input or answers you need. 

In reality, there should be no fence to sit on. There shouldn't be a 'parent' or an 'educator' side of the fence. Aren't we all working towards the same thing?  

Good luck with your first school day of 2013! 

Thursday, 10 January 2013

More support, less judging.

Okay, so I came across this news article yesterday about a 6 year old girl in the US who was disruptive at school, the police were called, she was handcuffed and taken to the station. It's an old story from April of last year so I'm not too sure why there was a fresh link to it from the new.com.au website, but it was still an interesting read.  In a nutshell, the girl was having a tantrum, damaged school property, and tried to run away several times.

Following the white rabbit of url links I then came across this story about a 5 year old boy with autism who was also removed from school by police. I think what makes me upset about both of these stories is the lack of understanding and support given to the families. No diagnosis is mentioned for the 6 year old girl, but any 6 year old who reacts with such violence is in need of help. Whether it is a medical diagnosis or she is at risk due to social and economic reasons, why is there no mention of the support given to the family to help resolve the issue. Either there was none, or good news doesn't sell enough newspapers.

I received a Facebook message this week from a mum saying she likes to read 'inspirational' blog, particularly from parents of kids with a disability. (Find me on Facebook here). I don't consider myself inspirational. An advocate yes; a loud, noisy, squeaky wheel advocate. I certainly want to share some of the insider knowledge I have as a special ed teacher, but I'm doing the same jobs as many other parents out there.

I wonder why as parents we are either seen as inspirational or unable to parent properly. When others see us at the shops, dealing with a child in the middle of a meltdown there are always comments. There's the patronising - 'You're doing such a good job',  umm, you mean the same job as everyone else where I parent and love my child?  or 'Why can't you just discipline your child?' oh, you mean beat the child for not coping with the noise of the shops? Sometimes I feel like I can't win either way. Maybe that in itself falls into the 'we're the same as every other parent' category. It doesn't matter whether it's breastfeeding, toileting, private schooling, extra curricula activities, no extra curricula activities, we will always be judged for our parenting choices.

Perhaps instead of handcuffing the children for having tantrums at school, or judging the child or parent during a meltdown at the shops, we could step up and say, 'Can I do anything to help?' Novel idea really.

Can I suggest you check out this wonderful program I found on ABC iView this week?  Part of it looks at this incredible school in the US and part of it explores the lives of the families who attend the school.

Image for Autism
Image from http://www.bbc.co.uk/programmes/b01gk4xc

Note: I do know there is a difference between a tantrum and a meltdown and I hope I haven't offended any parents by using them interchangeably here.

Sunday, 6 January 2013

At last I've seen the light

The other day we took the family to the pool. Just one of those spur of the moment things 'We've got nothing else to do this afternoon, why not go to the pool?'. Of course, as I mentioned in my last post,  nothing is ever that simple. In the back of my head the thought that it was great physio for my big girl was floating about.

We arrived and the girls began splashing about, swimming, diving, enjoying the fountain, introducing themselves to random strangers and making friends. None of my three girls are the shy and retiring type. To our delight, one family they introduced themselves to wasn't a complete stranger, but a mother and her girls who also attend our school. 'Wonderful' hubby and I thought, someone for use to chat to while the kids play.

After catching up and talking small talk, the mum tells me about how her eldest was recently diagnosed with a bone condition. Nothing too severe but still needing regular check ups and monitoring. The thing that the mum said which stood out to me was 'In the scheme of things, its not that bad. Other people have it much worse.'

If we were to look at it on a comparative scale, maybe that is the case. We certainly have more Drs and specialist visits, long term medication, life long implication, no cure or recovery. But then others have it 'worse' than us. Even more Drs, even more appointments, serious financial hardship. Terminal diagnosis.

I have to admit I am certainly guilty of visiting with friends, friends who are close and dear to me, and comparing how their children are progressing and developing to my big girl. I love my friends dearly but I see how their child is achieving at school, how they interact with their peers and parents, how they don't get frustrated because they can't make their body do what they want it to. Let's be honest, it hurts like hell. I go home and cry.

After I've had my cry I remember that it's not better, or worse, it's different. The mum at the pool had just as much right to worry about her daughter as I did. She had every right to feel that fear in the pit of her stomach when the doctor gave her a diagnosis she didn't fully understand at the time. Why shouldn't she feel the room spin as she thought about how it was going to impact on her daughter's life?

I am glad that my daughter has taught me to see things in a new light. Not better than, not worse than. Different. Comparative studies don't do you any help. I am certain that before my daughter I looked at people with a disability and thanked God that it wasn't me. I looked at families who had a child with a diagnosis and prayed that wouldn't be me. I didn't want life to be hard. I didn't want my life 'worse' than others. I am glad that my daughter has shown me what 'different' really means.

On the drive home from the pool we had the Tangled soundtrack playing in the car (as we always seem to do. Where did my music go?). My middle daughter's favourite song came on "I see the light". It struck a chord. Lines like:
 'All at once everything looks different, now that I see you'.
'All that time never even knowing, just how blind I've been'
'All that time never truly seeing, things, the way they were'

From the moment I laid eyes on my daughter, everything looked different. Not worse, just different.

Picture from: http://www.imdb.com/media/rm727746304/tt0398286

PS: The practical thing that came from my conversation with the mum at the pool was I was able to tell her about the Enhanced Primary Carer's Fund - Read about it here.
Also the Patient Travel Subsidy Scheme for those living in regional  Qld areas and have to travel to see specialists. I'm sure other states would have something similar. Read about it here.

Why is it that this information is so hard to find? >:(  We need to share more as parents. We need to create our support networks.

Please feel free to comment or email me if I can be of any help. I'm hoping that this blog will become  interactive! Suggestions welcome!