tag:blogger.com,1999:blog-19755682799199429142024-03-19T23:48:07.147-07:00Autism On A BudgetAutismOnABudgethttp://www.blogger.com/profile/09730569284478784181noreply@blogger.comBlogger220125tag:blogger.com,1999:blog-1975568279919942914.post-60234236575585851972020-02-21T06:00:00.000-08:002020-02-21T06:00:01.077-08:00The Words<div style="text-align: center;">
The Words</div>
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Telling her something directly doesn't work. It never did. As soon as it comes out of my mouth it is wrong. Now let there be a third person in the room to talk to and she listens. It is like we need a third person to buffer the words.<br />
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I am not even sure if that is the right use of the word buffer. It seems like buffer was an old word that was used when trying to listen to something on the internet.<br />
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Communication. The words, it is always about the words. Trying to say what needs to be said without triggering an episode.<br />
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Thoughts for today.<br />
Mylinda<br />
<br />Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-76330521206397675662020-02-17T05:12:00.001-08:002020-02-17T05:12:26.502-08:00Repeaters<div class="separator" style="clear: both; text-align: center;">
Repeaters</div>
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Both of the boys have autism but they are as different as night and day. They are also the same too. Both boys will repeat whatever they hear. Unfortunately it is usually cussing. We figure they ge it from the other students at school.<br />
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The latest ones though... The youngest one gets mad and says 'you spoiled little brat'. That might be another child. He also came home with 'rude, rude, rude'. That isn't a word we use. I wonder where that one came from?<br />
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At least he is using words. When he started school he only had about 10 words. And last but not least when he is talking he isn't hitting.<br />
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Life in a world with autism.<br />
Mylinda<br />
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<br />Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-33791663584624782062020-02-11T18:00:00.000-08:002020-02-11T18:00:01.323-08:00What Is Advocacy?<div style="text-align: center;">
What Is Advocacy?</div>
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As some of you know I work at my dream job. I get paid to help families with a member with a disability. I have gotten paid to do this for 25 years. I have used my skills with my own children and now grandchildren for 32 years. I get every question under the sun about disability which is good.</div>
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People call me saying they need an advocate. After talking to them for a few minutes it becomes apparent they want someone to make calls and go to meetings for them. I try to explain to the people who call me that it is not good for them or their children if I do that. They get angry - at first. </div>
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I explain how everyone will start reacting to me and not them. I explain how my doing it for them robs them of the experience and sense of accomplishment of doing it themselves. They still don't believe me until they do what I am coaching them to do. </div>
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Then the excitement!! They know what is like and they own the skill! It would be so easy for me to make the calls or go to the meeting for them. I like being the savior for them. It is like mainlining adrenaline. It probably isn't good for me AND it isn't fair to them.</div>
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Just my two cents, </div>
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Mylinda</div>
Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-78114629314127106772020-01-17T18:53:00.000-08:002020-01-17T18:53:13.986-08:00Letter To My Son<div style="text-align: center;">
Letter To My Son</div>
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Hey Son I want to talk to you about what do you do next. You got the medical evaluation that your child has Autism. Somewhere in the report it gives you recommendations. You may or may not have investigated these places already. If you have, call those places again. If you are on a waiting list tell them you are checking. If you are not on a list and they have one get on the list. Make sure they take your medicaid Managed Care Organization (MCO) insurance company. Then call them to touch base with them every two weeks. Put it on your calendar to do it.</div>
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If it was recommended you get speech therapy or Occupational Therapy for your child you look on the back of his MCO insurance card (not the medicaid one the other one). There is a phone number. Tell them the doctor's recommendation and you need a local Speech Therapist, Occupational Therapist, Physical Therapist, or ABA provider in your network. If that does not work tell the people at your MCO you need a special needs case manager. Then tell that person what his and your needs are. </div>
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Get a notebook for your child. Put his evaluation and other papers in it. Write down the name of who you speak to, the date, the phone number, and what you spoke about. You will need it to try and 'catch' your child up and keep him up with his peers. I have seen people do it. I know one guy with autism who last I heard had a batchelors degree, a job, a wife, a house, and was working on a masters to move up at work. I know others. Your goal is to raise a happy healthy human being on whatever level. It is possible but complicated.</div>
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As always if someone tells you something that does not makes sense or is just plain stupid call someone. Call several someones. Call me. </div>
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**This is just a scenario for Louisiana. There maybe other steps depending on where you are located.</div>
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Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-25900276616035361752020-01-06T15:30:00.000-08:002020-01-06T15:30:07.933-08:00Melt Down<div style="text-align: center;">
<b>Melt Downs in Adults</b></div>
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Melt downs in adults with autism is really not a lot different than melt downs in children with autism. They seem to happen at random. They usually seem to have very little to do with what is actually going on. It is further complicated when you have an adult that is fairly verbal because he or she can make a fairly good argument about what is going on. At least until you recognize the argument is ridiculous..</div>
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We are going through a lot of changes including a possible move. I can feel the melt down just below the surface. I can hear it in the tone of voice. Thankfully there is some distraction in that we want to go through our things and get rid of stuff that no longer serves us. Organizing things is a great distraction. We will see how long it lasts. </div>
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I keep trying to deflect the melt downs with varying degrees of success. I don't believe ignoring it will help the upset from the changes during a move even though we all want to move. </div>
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Till next time, </div>
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Mylinda</div>
Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-36229088863756050082019-12-10T16:33:00.000-08:002019-12-10T16:33:43.419-08:00Applying For Services<div style="text-align: center;">
Applying For Services</div>
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Applying for services for a child with autism is no fun. I mean who wants to ask for help and tell someone all their problems to justify they need a little help. What makes it worse is the attitude of workers who are generally nice and pleasant.<br />
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The things people will tell you... I attended a meeting with a very nice worker who obviously wanted to help the mother. While talking about waiver services the worker said a person could help with baths, light cleaning, light cooking, and such. Then the worker said 'but only if you can't do those things, you still have to be the parent'.<br />
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This was a very good mother that did without to take care of her children. It is hard enough to ask for the help your child needs or may need without your parenting being questioned. Then of course many times by the time a parent of a child with autism gets help they are exhausted from years of 'close supervision' and no sleep.<br />
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Attitudes like that appear to be ingrained into people that without even realizing it believe your child is they way they are because of the parent. Of course if or when the parent reacts then it must really be because of them. It is a perpetual Catch 22. In reality parents should be seen as part of the solution not part of the problem.<br />
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Till next time,<br />
MylindaMylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-11368717268979848342019-12-03T18:00:00.000-08:002019-12-03T18:00:02.950-08:00Grandma Advocate<div style="text-align: center;">
Grandma Advocate</div>
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One of the things I do for a living is work as a disabilty advocate. A lot of time it is in the educational system but not all the time. I help parents identify choices. I also help them identify the pros and cons of those choices.</div>
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Then I tell them the steps that will bring them closer to the options they choose. I have been doing this for my children for over 31 years and professionally for 25 years. That is if you don't count the year and a half I volunteered. </div>
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At this point it is in my blood. I recently went to an IEP meeting for one of my grandsons who has autism. I was vastly amused when the vice principal asked me if I was there as an advocate or as a grandma. I told her yes both. She rolled her eyes and looked at another vice principal at the meeting. </div>
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I wondered several things. Do principals stop being teachers when they become principals? Do teachers stop being teachers when they leave the school? Although I understand separation of roles I am not sure how you stop using the information in your head. </div>
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Anyway, my amusement for the week,</div>
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Mylinda</div>
Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-42244449133592670042019-11-26T18:30:00.000-08:002019-11-27T00:36:25.317-08:00Autism Doesn't Go Away<div style="text-align: center;">
Autism Doesn't Go Away<br />
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It really doesn't. People with Autism Spectrum Disorders may learn to cope better as an adult. Maybe. Or differently. No not really. I even hear adults with autism agree. Autism doesn't go away. Then there is the fact that there is less supports to further complicate things. </div>
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Many children and adults with autism, or at least the ones I know, seem to be emotionally and socially delayed. It may be a lot delayed or it may be a little delayed. I feel like saying it is the relationship silly... From a parent, my own, point of view it is like dealing with a teenager all the time. I am sure I have said this before. </div>
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The effects of autism are like a perpetual cycle of rebellion. Even when your child, now adult, is a competent major it is complicated. Even though they have a disability when they are a competent major they have the right to do what they please. They should have that right just like everyone else.</div>
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What is harder is the teenage-ish tendency to just not agree for no other reason than you are their parent. Even when they repeatedly come to you for help they don't want to use your suggestions. My typical children did finally get to the point they took my help and my advice or they figured something else out. </div>
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Maybe as my daughters get well into their 30's they will mature to the point they get it. Maybe I will have to figure out a different strategy. What do you do? Do you have any strategies that might help? Share in the comments. </div>
Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com1tag:blogger.com,1999:blog-1975568279919942914.post-61239132735338090812019-11-23T14:05:00.000-08:002019-11-23T14:05:55.112-08:00Is It Autism Or Something Else?<div style="text-align: center;">
Is It Autism or Something Else?</div>
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(She loves to take selfies </div>
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and send them to me.)</div>
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Autism doesn't go away or just get better. Maybe it is different but Autism is still there. That said I am still amused at some of the things the girls, now adults, tell me.<br />
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DD#1 has state funded services. One of those services is Direct Support Personnel (DSP). These workers help her in her own appartment. They are supposed to HELP her do all the things you need to do to maintain your household. (They are also trained to help with Autism behavior issues too.)</div>
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So recently DD#2 called me:<br />
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DD#2: What are you doing?<br />
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M: Taking a nap. Who is your person today? (Standard question between us.)<br />
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DD#1: Ms. T, she is hanging up my clothes for me.<br />
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M: DD#1 you know how to hang up clothes. Why aren't you helping her?<br />
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DD#1: Because she is doing it for me.<br />
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M: DD#2 that's not how this works you are supposed to be helping her.<br />
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DD#2: Mom go back to sleep. Finish your nap.<br />
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😯😶<br />
Granted people with Autism are extremely honest but really? Then again maybe this is just a young adult asserting their independence. That is good. But then again maybe the DSP is just spoiling her.... What do you think?<br />
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Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-69083504904609167602019-07-06T10:36:00.000-07:002019-07-06T10:36:28.414-07:00He Licked It<div class="separator" style="clear: both; text-align: center;">
He Licked It</div>
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One of my daughter's has Aspergers. She has two son's with Autism. They all live with me which is good. The youngest of the boys is 4 years old. He and his brother have always licked things but his brother who is 5 years old has grown out of that, for the most part, thankfully.</div>
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The 4 year old has not. We have to watch him when we are in different places to be careful what he might lick. I got a new recliner. It is red cloth. When my son and son in law brought it to my house the boys started climbing on it and sitting in it. Then it happened...the four year old licked it. After the surprise we laughed. I guess licking it was his way of baptising it into the family. </div>
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Do you have a licker at your house? Let me know in the comments. We don't know any others. </div>
<br />Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-68007678548507816282019-06-04T12:50:00.000-07:002019-06-04T12:51:11.468-07:00Four Ways to Qualify For Medicaid<br />
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I routinely get calls about families with children with autism
and other disabilities needing more therapy or to see specialists that their
insurance doesn’t cover.<span style="mso-spacerun: yes;"> </span>It could be
speech therapy, occupational therapy, ABA, etc.<span style="mso-spacerun: yes;">
</span><o:p></o:p></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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At some point the conversation works its way around to if
their child had Medicaid it might help with some of the things the child needs
that the family cannot afford above and beyond insurance.<span style="mso-spacerun: yes;"> </span>Many families are surprised to learn there is
more than one way to qualify for Medicaid.<span style="mso-spacerun: yes;">
</span>You have four ways you might be able to qualify for Medicaid if you have
a child with a disability that I know about.<o:p></o:p></div>
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The first way is to apply for Medicaid.<span style="mso-spacerun: yes;"> </span>This sounds strange but many times parents
are told by friends and professionals that they will not qualify when they
do.<span style="mso-spacerun: yes;"> </span>Medicaid takes strange things into
account when you apply.<span style="mso-spacerun: yes;"> </span>For instance
they take into consideration all those medical bill you are paying out of
pocket right now.<span style="mso-spacerun: yes;"> </span>My experience with
parents and Medicaid workers is the Medicaid worker will try to ask you about
things you might not of thought about or might not know about as best they can
if you explain your situation.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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The second way is what in our state is called the Family
Opportunity Act.<span style="mso-spacerun: yes;"> </span>It might be called
something different in other states.<span style="mso-spacerun: yes;">
</span>Louisiana has a program at the Medicaid office for families to be able
to ‘buy in’ to Medicaid if they have a child with a disability.<span style="mso-spacerun: yes;"> </span>There are other qualifications too.<span style="mso-spacerun: yes;"> </span>If the person who answers the phone does not
know about this specific program ask for a supervisor as this is a small
program.<span style="mso-spacerun: yes;"> </span>From what I understand from
other parents the fee is very nominal especially compared to what they are or
could be paying out of pocket.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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The third way to get Medicaid is if your child can get
SSI.<span style="mso-spacerun: yes;"> </span>In our state and some other states part
of getting SSI is also getting the Medicaid card.<span style="mso-spacerun: yes;"> </span>Parents are told from the beginning that
income is a consideration and it is, but they should apply anyway. <span style="mso-spacerun: yes;"> </span>The child also has to have a severe enough
disability. Think about it like this.<span style="mso-spacerun: yes;"> </span>If
a child qualifies for even $5.00 of SSI they get a Medicaid card.<span style="mso-spacerun: yes;"> </span>The cash assistance may not be encouraging to
you but the Medicaid may be a big help.<o:p></o:p></div>
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The final way I know of to get a Medicaid card is though the
state’s Community and Family Support Services.<span style="mso-spacerun: yes;">
</span>These services are at your area Human Service Authority if you are in
Louisiana.<span style="mso-spacerun: yes;"> </span>If you are in another state
ask at your state’s Office or Department of MR/DD.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>If
your child’s disability is severe enough your child could qualify for what is
commonly called a Waiver.<span style="mso-spacerun: yes;"> </span>One of the
services you get as part of the Waiver is a Medicaid card.<span style="mso-spacerun: yes;"> </span>The important part here is that if your child
qualifies for the Waiver it is regardless of your income.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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<span style="mso-spacerun: yes;"><br /></span></div>
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I am sure there are other ways to qualify for a Medicaid
card.<span style="mso-spacerun: yes;"> </span>These are just the ones I know
about for a child with a disability.<span style="mso-spacerun: yes;">
</span>Some of these include adults with disabilities.<span style="mso-spacerun: yes;"> </span>You have to ask though.<span style="mso-spacerun: yes;"> </span>Do you know any other ways to qualify for
Medicaid?<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<br />Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-87513452963679291262019-06-04T12:48:00.004-07:002019-06-04T12:48:54.328-07:00It has been awhile..It has been awhile. I guess I ran out of things I wanted to write about. Though occasionally I come across issues that I want to share. Check out my next post. Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com1tag:blogger.com,1999:blog-1975568279919942914.post-13885236799840510682017-05-25T08:00:00.000-07:002017-05-25T08:00:00.892-07:00Second GrandsonWe did go to the appointment for the second grandson. He did get the same diagnosis of autism. His autism is vastly different than his brother's autism. <br />
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His mother did agree to try another medication. He is so aggressive. She doesn't like medications. She took medication for help with her Aspergers. I tried then and tried now to explain it was just a tool to help with the aggression. I think she is just at the point she is willing to try anything. He beats on her pretty bad. She cries. Then I am upset. <br />
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Then she just called me. She said the younger one's score was 69 and the older's ones score was 62 on the scoring tool the doctor use. Then she asked me if that meant they both have autism. I told her yes. <br />
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She missed it. I just don't know what to say or think....AutismOnABudgethttp://www.blogger.com/profile/09730569284478784181noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-28522250271424572792017-05-24T08:00:00.000-07:002017-05-24T08:00:07.079-07:00The Joys of Grandchildren with AutismI know it has been a really long time since I posted. I just sort of ran out of things I wanted to say. Ran out of things to say about the issues my daughters were and do face... Ran out of things I wanted to say about adults with autism and aspergers.<br />
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As life has a way of doing though, things change and remain the same. I live with the daughter with aspergers. Well if you want to get technical it depends which one of us you are talking to about who lives with who. I could maintain the house hold if they left and had this house before she and her family moved it so I stand on that. :-) <br />
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Anyway, she moved in with the boyfriend and one child. With in a few months we found out she was pregnant. Within a week she delivered son number 2. (That is a WHOLE nother story. How do you not know until you are in the last week you are pregnant for a second child...)<br />
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I had noticed some odd things about the first child. I quickly was able to zero in on some behaviors as child number two grew. I kept thinking no. But yes...<br />
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We have the diagnosis of autism for the second son because it was easier to identify the characteristics. We go to the appointment for the first child which I fully expect to be the same diagnosis for as well.<br />
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We have gotten EarlySteps for the first child and now services from the school system. The second child is in EarlySteps now. I am using everything I learned. We are even going to try some new things with the boys. Particularly since the first grandson is so aggressive. <br />
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Who knows? Maybe I will start blogging again regularly too. Any grandparents working with adult children and grandchildren with autism spectrum disorders out there? AutismOnABudgethttp://www.blogger.com/profile/09730569284478784181noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-40996909054837549592016-03-23T00:00:00.000-07:002017-04-21T20:30:31.610-07:00How To Teach Children With AutismThis started out with how to teach my typical child some things he had to learn for school. It has turned into a pattern if you will to teach my children with Autism Spectrum Disorders. I keep tweaking it but figured I better get it down while I can. <br />
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1. Talk about it. What are they supposed to know? Where is the information? Did they read it or look at it? Can they repeat any and all parts of what they know?<br />
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2. Take turns. Let them be the teacher and ask you questions. You be the teacher and ask them. If it is a story role play the important parts. Act out the things you learn in history. <br />
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3. Tie it to things they know. Where and when would you use those math facts? Is there a scene in a movie like what you are learning about in history? Is there a movie version of a book they are reading in English? Is it the same or different? Is there a movie of what they are learning in history? Is it true or made up? Which parts?<br />
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4. Is there a visual reminder of some type? Famous paintings or music that you can attach to the subject? If it is a social skill can you come up with visual reminders? Can you write your own story about it? <br />
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5. Is there a game you can use those math skills? A sport? How about trivia for science or other subjects? The ,Are You Smarter than a Third Grader' game? (Or is it 5th grader?)<br />
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6. Read a book about it. On a lower grade level if you are reading for information for a school subject. On a youth level if you are trying to teach a young adult about social skills. <br />
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7. Model behaviors your self. Later talk to your child about how you did that. <br />
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Then do it all again. <br />
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<br />Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com3tag:blogger.com,1999:blog-1975568279919942914.post-88219849949199358142016-03-13T00:00:00.000-08:002016-03-13T00:00:26.946-08:00Autism AcceptanceI guess I am having a bad day. I wonder at the emails I am getting about Light it up blue for Autism Awareness. If someone has not heard about autism and had the opportunity to look it up I would be amazed. <br />
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Autism has been on every major television station I know of at least once and usually multiple times. Then articles in newspapers and magazines too. Student's with autism are in every school I know about. <br />
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I would like to see a month or a day for Autism Acceptance. That is a lot harder. It is not that people do not know about it. People do not know what to do our how to act around someone with Autism. Then again maybe they do not want to. <br />
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No I refuse to believe that. I believe most people are basically good. We as advocates, parents, and individuals with Autism need to help them figure out what to do. Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com4tag:blogger.com,1999:blog-1975568279919942914.post-86250439562290215332015-07-16T07:55:00.000-07:002015-07-16T07:55:00.590-07:00Routines<div dir="ltr" style="text-align: left;" trbidi="on">
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I am trying to get Dominoe into a routine. Many routines if I can. She used to be in a routine at home. Now that she lives on her own not so much. One of the routines is to get up, take her medicine, get dressed, wash her face, fix your hair, and clean her nails,<br />
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Routines also help her use independent living skills she has learned and needs to learn. Today we had a discussion about leaving her house and<br />
putting on her make up, fixing her hair, putting on a piece of jewelry, and putting on perfume. <br />
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She did have eye make up on. I wonder where all of her jewelry went though. I told her I wanted to start seeing some at church before I gave her any more. <br />
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Anyway over the years I have noticed routines help with her behavior. We need to work on that. I have learned routines are important with people who have Autism. I need to work harder at remembering. </div>
Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com3tag:blogger.com,1999:blog-1975568279919942914.post-18099534256453322482015-07-16T07:41:00.000-07:002015-07-16T07:41:00.113-07:00Fair Share of Services<div dir="ltr" style="text-align: left;" trbidi="on">
My second daughter is an adult with Aspergers. She does not qualify for Developmental Disability Services. Well she might if I really pushed the situation. She would just barely qualify. So over the years we have gotten her services from the Mental Health system or MHRS. <div>
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She has a case worker that can see her up to 3 hours a week to work on independent living skills and a counselor that sees her one hour every two weeks. Oh and a psychiatrist that she sees once every 3 or 6 months. It works for her. </div>
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One of the things I pay particular attention to is if the case worker and the counselor actually see her. They complain that she does not cooperate. I keep saying if she was cooperative she would not need the help. And it goes on. </div>
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This is the same daughter who has a son who receives early intervention from EarlySteps. He is 20 months. She and I have talked about making sure he gets to see the 'teacher' his one hour every week. He qualifies for that help and he deserves it is my explanation. </div>
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Well imagine my surprise when she text me last week because she had not seen her worker in a while. What is more she had called the main office. She had been told the case worker had a visit with my daughter on her time sheet. My daughter was hot. Well in the end, it was a mistake. </div>
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I am more interested in the fact she was worried about getting her fair share of services. You never know when they are listening. </div>
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Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com4tag:blogger.com,1999:blog-1975568279919942914.post-44391350281532933192015-07-13T07:22:00.000-07:002015-07-13T07:22:00.433-07:00Honey Moon Is Over<div dir="ltr" style="text-align: left;" trbidi="on">
Here maybe 8 months ago we changed providers. The former provider had changed supervisors. Dominoe was unhappy and I was definitely unhappy. The new provider was working very well. I just kept telling everyone she was honey mooning. <br />
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Of course I was the meddling mother, the never happy mother, and the advocating mother. But I try not to rock the boat. So just recently one of the DSWs claims Dominoe hates her job and will not cooperate. When every my self or the counselor asks her Dominoe loves her job. <br />
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I do not live with Dominoe. She has supports 24/7. There is no telling what was really going on. Unfortunately, one day after work the same DSW and Dominoe went by the office. They were running errands and the DSW stopped to get gas. Dominoe proceeded to hit the DSW.<br />
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When the DSW called the provider office, they told her to bring Dominoe back to them. Dominoe says the DSW hit her. In all honesty there is no telling if that is true or not. Dominoe has learned to lie at 26 years old. I guess she has also learned that she does not have to do what I tell her too.<br />
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Dominoe seems fine with that DSW gone. I really thought Dominoe liked that one. I am embarrassed and upset that she hit someone. Again. There will have to be an investigation by Adult Protective services again too. <br />
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I really do not know how to feel about the whole situation. Dominoe sees the counselor from the Community (Behavior) Support Team. I just do not know. </div>
Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com7tag:blogger.com,1999:blog-1975568279919942914.post-50929870832961602992015-05-28T07:12:00.000-07:002015-05-28T07:12:00.359-07:00The Next Generation<div dir="ltr" style="text-align: left;" trbidi="on">
One of my daughter's, the one with Aspergers, has two sons. The oldest one seems to have some problems. He does not really make a lot of sounds. I have been working with her and going to doctor appointments with her for a couple months. <br />
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She really does a good job meeting her boys needs and making sure they go to the doctor when they need to and when they are supposed to go. She just did not really seem to be getting any where with the primary doctor after I sent her with questions several times. Maybe she was not communicating the concerns clearly. That would be typical of Aspergers. </div>
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So I went. We got a referral to an orthopedist for his foot and his leg. There are twists where there should not be. We also got a referral to and audiologist for a hearing test. That is the first thing to check for speech problems. I am hoping and praying there is not any thing major going on. I am glad the doctor so readily was willing to give us what we wanted. </div>
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Well I am also not sure why it was not working before. Maybe because her son is still young? He was only 17 months when we started this. Then again it may be because I am not as willing to take 'no' or 'let's wait' for an answer. <br />
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Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com8tag:blogger.com,1999:blog-1975568279919942914.post-43442693927982076932015-05-22T08:32:00.000-07:002015-05-22T08:32:00.279-07:00Initial Steps for Parents of Children with Autism Having Problems in Special Education ServicesI work with parents of children with disabilities on a regular basis. Many of those parents are parents of children with autism. At the point parents find me they are usually in some type of crisis with the school system.<br />
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After doing this for many years I have noticed some patterns that I hope to capture and write about.
Sometimes the child with autism has been suspended or expelled. Hopefully the parent has reached out before an actual expulsion.<br />
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I know the parents I work with would like me to talk to them or make some calls and do something about their child’s situation.
Fortunately I have learned that for long term results for the parents I should not and do not do that. If I do the school system personnel start interacting with me.<br />
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If I get the parents to call and ask for documents or ask questions, they may have to call me back several times BUT the school system personnel interact with them. That works better for their child and for them. It is part of the parent being and learning to be the expert about their child.<br />
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From the beginning I tell the parent we need to meet, just me and them. Then I give them a list of several documents I would like to see. If they do not already have those documents then they can go to or call the school and ask for them.<br />
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First to get a snapshot of what has or should have been going on this year I need the current IEP. Second I also need to see the last 3 year evaluation from the school system. Where I live there is a smaller evaluation if we are just agreeing that the child continues to need special education services. I want to see the evaluation where more in depth testing was done. Third I would like to see behavior plans, office referrals, Response to Intervention (RTI) reports, suspension reports, or anything else.
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All of those things are important before I am able to do something for a child with autism or any other disability. Ideally those are things the parent has readily on hand. Even if it is not the parent has some verbage to use with the school system to let them know they are learning how special education services work.
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Dominoe, my daughter 16 yearsMylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com6tag:blogger.com,1999:blog-1975568279919942914.post-29526882134413968712015-05-13T08:12:00.000-07:002015-05-13T08:12:00.435-07:00Home for Mother's DayDominoe came home for the day for Mother's Day. She just wanted to come for the day which was fine. I have noticed that when she comes to my house it is for less and less time. That may be due to her sister's babies. With a 19 month old and a 6 month old things are busy and loud.
My daughter does not like loud. It is a sensory thing.<br />
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Another thought has occurred to me though. Maybe she is just getting older and does not want to be at my house as much. At her apartment she is queen of her castle. My older children are like that. They like their own house. She has staff with her waiver services 24/7 so that helps. I am not sure what we will do if or when that level of support is gone.
I have a Plan B but it would be hard on her. I suppose we shall see. Mylindahttp://www.blogger.com/profile/09553285058362612892noreply@blogger.com5tag:blogger.com,1999:blog-1975568279919942914.post-50531883545816390262014-10-23T05:46:00.000-07:002014-10-23T05:46:00.853-07:00A Baby BoyWell exactly one week and one day after we found out my daughter was pregnant she delivered a baby boy. He's healthy and wonderful of course.<br />
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She and I on the other hand are not getting along well. I was able to keep my mouth shut while she was pregnant. My patience is gone now though. I did fuss long enough and loud enough that she has the shot before she left the hospital. <br />
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We won't have any time where she calls herself on the pill. I understand and agree she has the right to have children if she wants. I also know she doesn't understand the consequences of things. There has to be some way to balance the two.<br />
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I'm still concerned that she didn't know she was pregnant. I'm still wondering if it is the Aspergers. How can you not know? She is still a wonderful mother but two babies under two is rough. AutismOnABudgethttp://www.blogger.com/profile/09730569284478784181noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-87166901198685974442014-10-21T05:31:00.000-07:002014-10-21T05:31:00.366-07:00She Went To the Doctor for a Cough and Came Out 36 Weeks PregnantAs you may remember I have two daughters with Autism Spectrum Disorders. One of them has Autism and the other has Aspergers. Lots of things have been going on with both daughters. I just forget to write about them.<br />
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Well Rose, the daughter with Aspergers, has had this funky cough. At times it got bad, so I told her to make an appointment with the doctor. She went to the doctor on Thursday afternoon. By the time she was done she was 36 weeks pregnant.<br />
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Because she and I argue so much I have been letting her go to the doctor by herself since she was 18 years old. Particularly since EVERYONE tells me she is an adult and can not be forced to do things like take her medication or use a reasonable form of birth control or cooperate with her case worker.<br />
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Then when she had her first son I still let her go to doctor appointments for her and her baby by herself. I've learned that I talk so much that she doesn't talk when I'm there. She's a very good mother. She watches her son like a hawk. I would only go with her to the doctor if there was a problem.<br />
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All of that to explain why I wasn't with her. The other thing about Rose is she loves her cell phone. She calls me or texts me most of the time she is in the doctor's office. She called me that Thursday. <br />
She said the doctor listened to her chest and felt her stomach. <br />
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He told her her stomach was 'distended'. She asked him 'What does that mean?' He told her her uterus was inflamed. She asked him 'What does that mean?' He told her she might be pregnant. She kept telling him no. Finally he got an old sonogram machine and gellied up her stomach and let her see and hear the heart beat. He tried to get her to look at the head but she wouldn't look.<br />
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I'm so upset. I knew she had gained weight but so had her boyfriend. They moved in about 5 months ago. We always have food. They don't have to walk a mile to and from the store. I figured that was why. I had been giving her the deprovera shot since March. It didn't even occur to me she was pregnant. She had taken a pregnancy test before she started the shot. She was probably pregnant since January...<br />
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And did I mention she has a son. She's been pregnant before. How can you not know you are pregnant? I wonder if it's the Aspergers. Maybe she is so unaware of her body? I know problems with realizing where your body is in relation to your environment is one of the problems with ASD. I really can't come up with another explanation? What do you think?<br />
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A baby is a good thing. A baby is a good thing. A baby is a good thing.AutismOnABudgethttp://www.blogger.com/profile/09730569284478784181noreply@blogger.com0tag:blogger.com,1999:blog-1975568279919942914.post-39084890054163355012014-09-09T06:45:00.000-07:002014-09-09T06:45:00.115-07:00Yes People with Disabilities Can be Unsavory CharactersMy daughter has a new boyfriend. I learn about him on a Wednesday. He showed up at her door, which was fine. I won't use his name for reasons which will become apparent shortly. The DSPs (Direct Support Personnel) are supposed to call me, which they did. They reported from the beginning that he had a disability. <br />
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I like to know when something different goes on because most of Dominoe's schedule and life is pretty structured. If you have a child with autism you know how important that structure is even if they are an adult. <br />
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I'm not sure if they saw each other the Thursday. I just don't remember. I know the Friday they did. There is going to be an election in a few months. One of the people running for something or the other threw a dance in the recreation room at the apartments where DD lives.<br />
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The next day, Saturday, we met at a restaurant for DD's birthday. She was 26 the next day. The new boyfriend wanted to attend so I said yes. He gave DD an iphone and activated it for her birthday. I'm aware he has a disability and asked lots of questions.<br />
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He was aware that the phone was expensive. He was sure he had the money. Even though he has a disability he does not have a service coordinator or a provider agency. He worked at the same place as DD but I'm not sure if it was competitive employment or not. <br />
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At some point the next evening he ended up with all of DD's gift cards. When I fussed and asked her about it, she told me they were hers. And...she's right so I didn't say a whole lot more.<br />
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The next evening she gave him her birthday money. Now I really fussed. She told me it was 'theirs'. Then I really fussed. There is no theirs with a guy you have been seeing five days. We continue to discuss this issue and when money 'might' be shared between a couple. <br />
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I continued fussing and one of the DSPs who has been with DD a long time. She had a long discussion with this young man about DD not understanding. The next day he brought back the cash but to this date we have never seen the gift cards. <br />
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I know this young man knows more than DD does because he drives and he can carry on a general conversation by text. Yes, DD texts but it's 'lovey lovey lovey' or 'mothery mothery mothery' or something similar. <br />
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At some point he stopped talking to DD. He also asked one of her DSPs to be his girlfriend. He told the DSP her would buy her a cell phone!!! He has been seeing DD less than two weeks. <br />
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I'm in the process of trying to get DD to understand that he isn't a good guy. <br />
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I'm also amused when I think of the people who say people with disabilities are little angels - NOT. lolol Do you have a similar story?<br />
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<br />AutismOnABudgethttp://www.blogger.com/profile/09730569284478784181noreply@blogger.com0