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Tuesday, October 21, 2014
Thursday, October 16, 2014
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and also check this video:
Wednesday, October 15, 2014
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Recently we had to do a blood draw and needed a social story. The first time we went in it was a failure. We had just finished up with our well checkup and the doctor needed Sensi to give some blood to check her levels for iron and vitamin D.
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We went down to the lab, signed in, drank some water and waited. I explained to the phlebotomists that day that Sensi has autism and they need to explain everything to her so she understands what they are doing so she doesn't feel afraid. They had trouble finding a vein to use and then after prodding and tapping her arms for about 5 minutes they called in another technician. The new tech was irritated that Sensi had taken off the rubber band while we waited for her. She also instructed yet another technician to hold Sensi's other arm. She put the needle in without any warning aside from all the instructions to the other techs, and Sensi pulled away from the pain. She said very irately "She backed off the needle!" I just replied that we are done for the day and we'll come back another time, and asked if Sensi could get her lolly. They were surprised and I think a little relieved to not have to hold down a kid to get a blood draw. We left before there were any bad situations to undo and gave it another try another day.
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I googled social story blood draw and came up with this: oneplaceforspecialneeds.com/main/library_blood_test It has lots of information about the environment and interesting pictures.
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But upon discussing it with Sensi's speech therapist we decided that there were too many steps and too much information to address the issue at hand. She reduced the process down to 8 short steps, and practiced with her the day before the next try. We practiced again that night, and I reminded her and showed her the steps before we went into the clinic.
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Blood Draw Short List Social Story
1.Sit in chair with hot pack on arm
2.Rubber band will squeeze around my arm
3.Put arm flat
4.The Nurse will tap,tap,tap, flick, poke.
5.They will stick the needle in, hold still. It will hurt a little bit.
6.(Pop sound effect) they will pull the syringe out
7.(Pop sound effect) they will pull the needle out
8.(Smack sound effect) Put a band-aid on.
The nurse has the blood, I am all done helping the doctor.
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The most important thing I learned this time around is to be prepared with a social story for the medical staff. When we arrived I showed the short list social story to the phlebotomists, and explained that Sensi has autism and we worked out a story with her teachers. They all read the list and followed the script closely. I saw they made sure to check it a couple of times.
Since Sensi knew the steps and the medical staff knew the script everyone was comfortable with what was going on and it made everything go smoothly and quickly. I was relieved it went so well, and I think everyone else was too.
Sarah H, SPL
Tuesday, October 14, 2014
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Thursday, October 9, 2014
Tuesday, October 7, 2014
Thursday, October 2, 2014
Tuesday, September 30, 2014
Thursday, September 18, 2014
Wednesday, September 17, 2014
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Sitting in the waiting room at one of my kids' therapy appointments, I met a mom who is just starting her special education journey. Our conversation made me realize that being a special education parent you evolve a certain skill set. With practice you get good at some things that may not come naturally to you and are not taught. Most of us learn this by trial and error.
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Communication - Once you are a special needs parent it is important to communicate what your child needs and to advocate for them. You are going to have to communicate with lots of different professionals. Make sure you understand what they are telling you and ask lots of questions. Also make sure they understand what you are telling them. I send a getting to know you letter to my children's educators every year. This year I also discovered it was helpful to share that information with the transportation staff too.
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Ask for what you need - If your child needs something, the sad truth is you are going to have to ask for it. There may be offers for help here and there but if your child or family needs something from a school district, or the local government you most certainly have to ask. The honest truth is that's how they keep their costs down. They sometimes can't help you UNTIL you ask, so ask.
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Hold the professionals accountable- If you don't understand what is going on with your child at school ask for some explanation. Once your child is labeled and designated special needs you get either an IEP or a 504. As a parent of a child with an IEP you can call a meeting to discuss their services at any time of year. If the school district withholds information or services, remind them of your rights. Wrightslaw.com is a great resource for what you can legally advocate for and what you should expect from the professionals serving your child.
Persistence - Sometimes you will have to ask more than once, or someone will have a bad attitude when you deal with them, and you need to devise a work around. You will have to continue to advocate for your child even in the face of an adversarial attitude and ignorance. Keep trying and keep looking for a solution or resolution. Resources are limited and sometimes they count on you giving up. Don't give up.
Problem solving- I have been a noodler since I was a kid, so problems solving and puzzling out solutions is a natural state for me. Sometimes the problems are bigger than your abilities or experience. Look for solutions in other places if you are not getting what you need from your local school district. Ask for help from local advocacy agencies like your local autism society or your local version of PACER. I home schooled my son with K-12.com last year when his transition to middle school failed. I also pulled my daughter from the school district when they targeted her autism program for elimination. Even though her school placement last year was far from ideal, it positioned us to be one of the first families to attend the new autism school in the special education district that serves the northern suburbs of our area.
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Pick your battles/Know when to cut your losses-If the school district has decided that all special education students belong in the general student population no matter what their needs, there isn't much you can do about it besides a lawsuit. That takes time, (which you don't have since your child's development is at stake,) and money. You may be able to win a legal battle, but sometimes its just best to look for your solution somewhere else. I am not saying not to go through the steps of advocacy. Talk to your school board, the special education department, even your local newspaper. But sometimes you cannot change the tide and you need to devote your energies elsewhere.
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Networking - Look for other parents either online or in your school district. Having a special needs child can be isolating. There usually aren't enough of us concentrated into our neighborhoods and with enough free time to form a local support group. You may be lucky and get someone from the school district to host a monthly support meeting. You should look to see if there is a special education advisory council in your school district and join. This is where you will get the information of what the school district plans are for special education in the coming months or years.
The online special needs community is there for you 24/7 or at least as often as some of us can get to a computer. There are Facebook pages and groups, as well as lots of blogs to follow (Snagglebox has been one of my favorites.) You may be overwhelmed by all the information available about your child's diagnosis at first, but with time you will find your trusted information sources. The Thinking Person's Guide to Autism, Autism with a side of Fries, and Shut Up About Your Perfect Kid are some examples of my favorite special needs communities online.