Tuesday, June 23, 2015

10 Things That Make Me Awesome - From a Special Needs Mom



I am having a bit of a hard day week month, so I decided that I would post about all the things that make me awesome. Think of this as less of an ego post, and more of affirmation of what I really do.

1. I Gave Up My Birthday and Mother's Day - This one is a bit selfish. I really hate having to spend these days with non stop fits. I did not succeed on Mother's Day. It was maybe the worst one yet, but I worked the two weeks between Mother's Day and my Birthday convincing my kids that we were NOT under any circumstances celebrating my Birthday. They actually forgot it was my Birthday until right before bed, so it was a success. One day. . . I will have an epic party to make up for the decades of uncelebrated birthdays.

2. I Feed My Kids - After loosing our CSA - because they decided to pull out of our city the same time we lost our house, L's care provider, and L's school - we have been shopping exclusively at Costco. Really bad idea. We cannot go in there and not blow our entire month's food budget. By the end of the month there was no food in our house. I found a way to extend our food budget (and am trying out Amazon Fresh - seriously where was this when S was getting banned from grocery stores?). After work, in which S is come with me this week, cooking dinner, getting yelled at by my sister (yep I really needed that one), and taking everyone to Takeqondo I still managed to make them pudding from avocados and prep the beef stew for dinner tomorrow.

3. I Can Easily Handle Two Meltdowns at One Time - I Can Handle Three Most of the Time - This is less easy when one of the people having a meltdown is an adult instead of one of my children. However, even then, I averted a full blown blowup from L. Meltdowns are like dominos at our house. One person starts and sets off the other two.

4. I Can Press Down My Emotions So My Kids Cannot Tell Anything is Wrong - If I have a bad day, they will have a worse one. I must be calm and level headed at all times. I do not always succeed - but I do more then not. After my kids go to bed I may cry, or come write a blog post (or both), but I manage to keep it all buried while they are awake.

5. I Manage Child Care, IEP Meetings, Household Care, Cooking, and My Job - I think that pretty much says it all. I would love a day to just sit on the couch - but then the kids will make me play Minecraft with them.

6. I Play Minecraft With My Kids - This is perhaps my least favorite thing to do. It is their favorite. So I get on and play with them at least one a week. We even have our own family world.

7. I Am a Therapy Mom - Some kids have soccer or softball. My children have therapy. L is currently in six hours a week. Then add in family therapy, medication appointments, and we are working on more individual therapy for J and S. That alone is like having a second job - it is also as expensive as soccer or softball. Although, in many ways the three hours a week of Taekwondo is still the most effective.

8. I Make the Abnormal Look Normal - We have family contingency plans for zombie apocalypses or sider attacks (both are S's triggers). I can handle a mini meltdown (enough to free most people out) from L without even having to stop what I am doing. When there is a big one my older two know what to do then. We have plans for when S is not maintaining control, or when J is being too bossy and not focusing enough. My children will watch out for each other using their own strengths - helping to counterbalance their areas of weakness. Even if they do like making each other mad. We do this EVERY SINGLE DAY, to the point that it is our normal. It takes an outsider joining in for me to realize that everyone does not live this way.

9. I Took a Nap - I really did take a nap once last month. It was on a Sunday after church. S was asleep. J was reading. L was on her Kindle Fire right by my room. I feel asleep for a whole hour and a half. Now every time my family calls and I do not answer they think I am taking a nap since I was able to have one once.

10. We Make it Through Every Day - No matter what is thrown at us we get back up the next day. In the last six months alone the kids have had to deal with loosing our house, being homeless, being continually turned down for new places to live, and finally having our own house (a beautiful mobile home). This also means changes in routine, a new church, new friends, and a lot of moving and cleaning. Someone saw my family on a good day and couldn't handle it. It made me realize how much we do to stay a functioning family. Despite it all we do function, my kids are great kids. When everything is going as planned my kids are the best behaved children around.

Bonus - 11. I Stay Up Way Past My Bedtime to Destress From a Really Bad Day - and I will still do every thing I need to do tomorrow.

Good Night All!

Wednesday, June 3, 2015

What is Autism & What is Asperger's - How I Explained it to My Daughter With Asperger's



Some of the most interesting conversations that our family has is in the car driving to work/school in the morning.

This morning's discussion started when L described one of her old YMCA friends as being "Special Needs".

I asked her if she went to a special education classroom. She answered "yes". I asked her if that also made her "Special Needs". She answered "I guess". Then I asked her if she would like it if people called her "Special Needs". She stammered about how she did not mean to be rude.

The child that she had previously been referring to was autistic. I mentioned that he probably had Asperger's like she has. Which lead to the question of what is Asperger's and how does it differ from Autism.

Here was my explanation to her. It is an explanation based upon my experience of being an Aspie, raising two Aspies, and working and interacting with other children on the Spectrum.

                                                                                                                                                    

Autism is like a language. You are born into one language. For us this is English. You know English without having to try it. Should you try speaking Spanish to your friends this would be very difficult for you.

Your primary language is Autism.

This comes naturally to you, just like it comes naturally to children with Classic Autism.

Children with Classic Autism get to stay with their native language.

Children with Asperger's have one side in their native language and their other side in their not native language. I call this the Neurotypical world. It can also be called the mainstream world.

You can learn the skills to navigate the Neurotypical world.

You learn social skills. You learn to use your words. You learn when it is not appropriate to flick your fingers in front of your eyes, or flap your hands.

Are these things easy for your? (No) No, you have to work hard to do all of these things, but you can do them.

Living in this other world is exhausting. It takes skills that you have to work at all the time. This is why when you come home you go back to your native language of Autism.

This language has it's own body language, it has different rules, and it is a world that you instinctively understand.

Most of my friends have children who are on the Autism Spectrum. If Autism is not their native language they may have a hard time understanding what their children say. Since Autism is my native language I usually understand their kids just fine.

Once when you were younger we were at the park with some friends. Taylor, my friend's son, climbed on top of some playground equipment and got stuck. His Autism language screamed that he was stuck and needed help. However, to his mom he was just stimming.

When I worked with kids on the Autism Spectrum, I was often able to understand when kids were not learning what the other therapist thought that they were learning. There was one boy that was learning about different objects. The objects were on cards that had borders around them. I was able to tell the other therapists that he was not learning the objects. Instead he was matching the boarders. When we took the boarders off the cards, he was able to start learning about the objects.

I can see things like this easily, because my native language is the same. However, in order to take care of you and to keep a job I have to stay in the mainstream world most of the time. Even I have to escape into my own Autism world. I do this mainly by reading. If I do not read I could not function like I do.

______________________________________________________________________________

This is how I explained Classic Autism and Asperger's to my daughter.

Tuesday, May 12, 2015

Review - FiLIP - Watch, Phone, and Tracking Divice



I have been waiting a while to write this review. I wanted to make sure the review was as accurate as possible. Based on our lack of success previously, I wanted to make sure that I actually thought that this product would work. For our previous failure you can read my review of AngleSense (I think it is a great product, but it did not work for my high functioning daughter).

I looked at a lot of websites before purchasing another product. I talked with my daughter through it all also. The reality is that she was perfectly capable of destroying anything that I purchased - so I might as well not bother if she is going to do another toilet flush.

 

It is a PHONE!

When I came across the FiLIP phone I was ecstatic. My first thought is that this is one product that I can sell to my daughter. She had a cell phone, but at ten she often left it in her backpack, and then complained because she did not have it when she needed to call me. My daughter has random bits of separation anxiety that seems to come and goes. A cell phone has been a way we have been dealing with that for a while now.
It also had the parental controls that I had on her other cell phone. If anything this phone is even more locked down. You can choose up to five numbers that can call the phone, and that the phone can also call back. Only those numbers have access - no one can slip through.
The names are stored in the phone. The child can select the name they want to call and it dials. It took my daughter all of four seconds to figure out the two buttons and what they did.
The phone only works on speaker phone. Everyone around can hear the conversation. The volume is not overly loud, so if we are in public it is not concerning. It is great if your daughter calls you because the bus showed up in front of the house 30 minutes early, and you just left work. The bus driver can hear you as you explain where you are and how soon you will be there (yep that happened this week).
I read about complains in hearing the child speak. I do not have any complaints. As long as she holds the watch up near her mouth I hear her just fine. We have tested it (a lot) with grandma (who has problems hearing everyone) and it worked just fine - so it passed with flying colors. 

It is a WATCH!

About this same time my daughter was insistent about wearing a watch. If your child hates watches. . . this may not work. Ultimately it is a watch.
No one needs to know that this is a cell phone. My daughter wears it to school with zero problems. That being said the teachers probably found out it was a cell phone is less then 30 seconds, knew it was to replace the device she flushed down the toilet at school (ie - if she runs at school this will help them also), and she is currently not in a mainstream classroom. Still, it really would not be hard for this to pass as just a watch.
The clock face is really cool. There are different options for displaying the time. You have your traditional number format, and you have the time written out in words. My daughter prefers the words. Her watch will say Nine Seventeen instead of 9:17. If there are other displays I never see them. My daughter keeps it on the words consistently now.
The watch is big. Some people may not like this. I love it. It makes it easy to find when she puts it down. She takes it off all the time - she does everything - and fidgets with it. Sometimes it just put down, sometimes it gets put back on. I developed a rule before she got it - she had to have it on anytime she is out of the house. She took it off a lot at first. She kept it off for most of the time at therapy at first. Now it is on almost all the time. She even forgets to take it off for Taekwondo class - so if she can get used to it. . . besides big is in - and I really like that it is hard to loose.
If you do loose it - you can also call it - BONUS!

You can send MESSAGES!

L currently has therapy three times a week. It is a group program. Most of the time I tag team drop off and pick up with Grandma (family is great). When I arrive to pick her up I open my app and text her that I am there. She gets a simple notification that tells her to look at her phone.
Text messaging is one way. At first this drove L nuts - she was used to using her phone to text me. Now she just calls me back if she needs to. Adding a way for the watch to text back would be pretty impractical with the design. Besides, L's text messages were always interesting anyway, I prefer a phone call.
The phone only has one option for services. It goes through AT&T. We are a Sprint family so it is the only phone on a different network, but I am pretty ok with it. The service is only ten dollars a month and includes unlimited calling and unlimited data. The truth is that this phone is not made for your child to call you a ton, and it really does not eat up data since that is only used for the GPS. However, it is nice not having to worry about it at all.

 

Will it HELP?


FiLIP uses GPS to track your child. My daughter does not know this. She thinks it is just a phone - and it is, but it does more. with the FiLIP app you can set the frequency of location updates. The most frequent update period is 15 minutes. This is what I have L's watch set to. In addition you can do a manual refresh in the app when you are looking at the map. There is also an option to do a flash refresh, where it refreshes every three minutes for 15 minutes.
Ultimately, the GPS is the one thing that I could see being improved on. I would love a five minute automatic update - but I think it would kill the battery of the phone, so they do not offer it. If L runs I would not get very detailed information of where she is - I would get general location. While I do see this as a downside, it is not a deal killer in my opinion. This device has enough other options that I still feel that it is keeping my daughter safe.
The bottom line is my daughter wears this device. She would not wear a tracking device that would give more minute GPS details.




Safe Zones
You can set up to five Safe Zone's. When the GPS updates that the watch has left or entered one of these zones you will get a push notification through the app. The notification will only come when the GPS refreshes. So, the notification could be delayed by 15 minutes (or more if you have it delayed more). This has not been a problem with me at all. Just now I got a notification that L has left school, it was probably delayed by about ten minutes, but now I know she is on her bus (I can see where she is on the map to make sure she is on her bus, and not running from the school). The biggest downside about Safe Zones is there is a limit of five. I mean really? School, Home, Church, Therapy, Grandma's House - boom there is five, and I didn't even get to add in our Taekwondo Dojo. I wonder why they have it limited.

Emergency Calling
This is hands down my favorite feature - and is why I am ok with the not perfect GPS ability of the phone. By holding down the red button for five seconds (L has NEVER accidentally dialed this - but I did once) the phone will automatically contact the primary person on the watch. If the primary person does not pick up it goes down the list of contacts ONLY if they are selected for emergency phone calls in the app. So you can add in that you child can contact their best friend on their phone - but not have their best friend be called in case of an emergency.

When the phone calls for an emergency it will still show that your child is calling, however before it connects a computer voice lets you know that it is an emergency call. The phone will keep dialing until it connects to someone. The phone will stay connected until the adult's phone (and only the adult's phone) disconnects. My daughter cannot do an emergency call and then hang up on me!

Here is the best part. . . I can go into the app on my phone and make her phone do an emergency call.

Yes, I can make her phone connect to mine, and she can not hang up on me. She can throw her phone into a dumpster and run away. . . so it is not fool proof (and no that one has not happened). The bottom line is she likes her phone and wants to keep it. But, if she runs, I can make her phone call mine and I can listen into where she is. If I think she can be reasonable (since she is running we will go with not happening) I can also attempt to talk to her.

Battery Life
I have read horrible reviews about the battery life. Since this is a device that uses GPS, the life of the battery is dependent upon the refreshing of the GPS. We charge the phone every night. I give it to L to put on before she is even dressed. She wares it until about eight at night. Her watch is set to update ever 15 minutes. I typically do between five to ten manual updates a day. In addition she calls me from 5-7 minutes three or four times a week. When we get home at night the battery is low, but it is not dead. It makes it through everything that we needed it to.

I have read a tip that if you go into the app and turn off the phone that it will make sure that the phone is completely charged. I have updates disabled after 7, so it does not continue to update at night (she is not wearing it anyway, and thankfully with her meds she sleeps at night). I do not have a problem with it charging completely before morning, and doing what I need it to do the next day.

Customer Service
I have heard complaints about the FiLIP customer Service. We have had the phone for several months now. During this time the phone stopped sending notifications out. I sent a message to customer service through my app. It took several days before they responded, they waited until after they had fixed the problem to respond. They did fix the problem also. I started to receive notifications, and then about 12 hours later I received a reply from customer service. Unfortunately the update affected the phone so that it didn't connect to service. The watch was dying about noon everyday, and the GPS never updated. I replied back to my first email chain, and the problem was fixed within 24 hours. I received a reply about 72 hours later.

The communication is not quick. However, the response time is. I personally care more about response time. If I am going to invest in this product I want it to work. Emails back to me saying they are going to fix it is not as important as them actually fixing it. However, I could see that this could be a downside for other people - so I did want to include the feedback.

Overall I really love this product. I am glad that I invested in it. I hope that they expand on the product to make it more marketable to teenagers. It will not last with my daughter beyond two years, and I could totally see a teenage market for this product. For now I am just glad it is here to help me make it through the next two years.


Thursday, April 23, 2015

Dating with Special Needs Kids: Is it Worth it?


Some months back I began dating someone. He lived a couple hours drive away and did not have the same days off as I did. It really worked out perfectly. I would take a day off work and we would spend all day together before I went to pick up the kids. It got serious. I fell in love.

I was upfront about my children from the beginning. When I first met him we were just friends talking. I had told him about the autism, and about some of my youngest daughter's struggles before we ever entered into a relationship.

I guess the truth is that you can never prep someone for what we go through everyday as a parent of special needs children. I forget that something that I do each and every day is weird to someone else.

When he asked to meet my kids I explained to him how big of a deal that was. I was extremely hesitant. I tried to let him know that it was not because of him, but because once I introduce someone to my daughter's life she expects that person to stay around. It is tricky with any kids. It is trickier with special needs kids. He insisted that this is what he wanted.

We met at a park. It was familiar territory for my kids and they played like they normally would.

I had made a picnic lunch.

They kicked around a soccer ball, played twister, and ran around crazy. Normal kid stuff.

At one point L had a mini meltdown about having to share my attention. It lasted less then ten minutes and did not involve screaming, kicking, or running. By my standards the day was a success.

He was nervous. Who wouldn't be? I thought everything was good beyond him being nervous.

The truth is that I do not read people well.

We texted when he went home (calling with kids around does not work out well). He brushed me off the next day. I let him. I figured he just needed time to process. A few days later he told me everything was fine. I find it ironic that that was the last time he communicated with me.

I haven't heard from him in months.

I learned that you can never truly have someone understand your everyday normal until they see it. I also learned that I would much rather have someone tell me they were done rather then just walk away. It is a bit cowardly in my opinion.

The truth is that I do not blame him for walking away. There are days that I wish I could do the same. I understand and respect his decision. The last thing I would want is someone around who couldn't handle or appreciate my world. I am sad that he could not even say goodbye.

If he couldn't handle a mini meltdown at the park there is no way he would have survived the epic chaos that happened since then. The meltdowns that resulted in L changing schools, loosing her afterschool care, loosing our apartment, and a five day ER stay because no one would admit her to inpatient care.

A large part of me knows all of this would have happened anyway. I mean it happened before, so it happening again is not a big surprise. We were leading up to it anyway. Yet, I feel guilty that letting her met this guy, someone she saw as a future dad (not that I ever put it that way) and wonder if having him walk so easily out of her life was the trigger for everything that happened after.

So how do we balance it? Do we just not date? Do we date with no possibility of it moving forward? Or do we move on hoping that eventually we will find a person that will understand our everyday crazy and hope that we do not screw our kids up too much in the process.

I suppose I should note that I have been divorced for over five years now. During that time I have dated a little, but not a lot by anyone's standards. During that time this is the only time I have introduced my children to someone.