Wandering is Scary for Autistic Families

For the last few years we've discussed the possibility of getting a family / service dog for the boys. Mostly to help keep track of Daniel, to keep him from wandering - help keep him close - or to find him if he does happen to slip away. We've researched many of the service dog programs, and to be honest, we couldn't afford most of them. There are many programs where you "fund raise" for 1/2 of the money, and the other 1/2 is donated, but it can still be as much as $13,000 or more.

We've gone back and forth on the topic of what's best for our family and when. We've tried a GPS monitor, but kept having different types of problems. We've gotten a handicap placard for when we go to a store, so we can park closer to the store - in hopes that if Daniel bolts, he won't run through the parking lot traffic if he bolts. We agreed that at some point we would most likely need to get him a service dog. Especially since he will bolt without a  second thought, and he is fast.

Like many autistic kiddos, he has no fear. No fear of traffic, no fear of something that draws his attention (which could be a shimmer on water), and no fear of people. He can't read facial or social cues, so he doesn't know that there may be someone out there who would have less than good intentions toward him. He may look at you after you call his name 5 or 10 times, but it doesn't mean that he'll come to you when you call. If you run after him because he's heading for a dangerous situation, he may think you're playing and start running too... away from you. These are just a few of the problems we parents of: wanderers, runners, or children with a "flight risk" - face every day.

As parents of children with autism spectrum disorder (ASD), we've learned that you not only pick your battles with your kids (and your friends and family too), but you really have to weigh out what will get attention and when. For example, our boys have ADHD (attention deficit hyperactivity disorder) and we are always being "updated" on the different programs that are happening, like soccer, gymnastics, etc. As much as I would love to put our little guys in these programs, there aren't enough hours in the day. They go to school for 29 hours a week, come home and have ABA (Applied Behavior Analysis) therapy for 11-1/2 hours a week. That's more than some people work in a week. At this point and time school and ABA win - hands down.

Recently there have been many young children with autism that have "gone missing" in the News. Some cases have happy endings, unfortunately many do not (one is too many to me). One case in particular has brought our attention back to the "dog" conversation and changed our minds about waiting. Avonte Oquendo - a 14 year old autistic boy, non-verbal, known to run. According to the news reports Avonte went missing on October 4, 2013 when he left his high school - unattended. Late January 2014 we learned he went home to Heaven, not to his parents. Many, many, many things went wrong that led to the death of this beautiful young man.

http://nypost.com/tag/avonte-oquendo/

We have agreed to get a dog and have it trained for our special needs and then have him licensed. After that we will again look into the GPS. As every parent knows, safety is of major importance in this day and age, no matter where you live. I'll keep you posted on how these things go.

From a mother's heart - having children on the spectrum makes you appreciate everything that your child learns and they remember. I pray that no child would ever go missing, and short of that - more people would become involved and help out the special needs members of their community to keep them safe.
God Bless!

A Dose of Reality

Over the last few months we've been dealing with issues of "reality" and preparation. My mother is 80 years old and has been battling breast cancer for several years now, had to be admitted to the hospital between Christmas and New Years.  She was very sick, and I admit, we thought it might be the end. (She's alright now, getting stronger every day). She was in the hospital for about a week, then moved to a rehab facility to help her get strong enough to go back home. She's very independent and won't hear of an assisted living facility (not to mention how she'd afford it).

This brought up all kinds of issues for my brother, my sister and I. None of us are in a position to be able to bring her into our homes and care for her. It made me think of how to, or if I even should, tell the boys if something had indeed happened to her. They know who she is - Nanny. They seem to be happy when they first see her. They'll "check her out" and then be on their way to whatever they were doing before she came in. Being autistic, I realize that they don't see her very often, would they understand "passing on"? I'm not so sure.

I began thinking about the possibility of something happening to my husband and/or myself. Who will take care of the boys? Where will they live? Do we have the right amount of life insurance? Savings? Will the boys needs be met? So many questions. I realized that for the last few years we had been talking about wills, trusts, guardianship, etc. Still unsure of everything we need, but we hadn't put anything on paper yet. So now reality had come our way... it's time to get a move on it.

Here's what I've found (so far) that parents should have in case the worst (GOD forbid) should happen (from the special needs parents point of view anyway):

1. A basic will - (free online at the following link):          http://www.rocketlawyer.com/
2. Apply for supplemental security income (SSI) for your child at:                      http://www.ssa.gov/applyfordisability/child.htm
3. Information for social security benefits for children:                                         http://www.ssa.gov/pubs/EN-05-10085.pdf
4. Information on social security survivor benefits:                                              http://www.ssa.gov/pubs/EN-05-10084.pdf
5. Temporary Guardianship papers:                                                    https://www.rocketlawyer.com/secure/interview/questions.aspx?document=34510908#q1      [so the person who assumes guardianship of you child has what's needed until the will is formalized]
6. Medical history & medical permission forms:          http://www.acep.org/medicalforms/
7. Child's Information:          Schedules, Routines, Medicines, Doctor's information, Legal Documents, agencies numbers and case worker names, school information, favorite toys, list of things that comfort, what stims are used & why (if you know), anything else that would be most helpful for your kiddos

This is just the beginning. You don't want anything left to chance - if you can help it. I think I'm going to start a notebook with dividers and simply add information to it as I go. That way, not only will it serve as a reminder for us, but make it easy to add things to it as we learn about them.

From a mother's heart - GOD willing nothing happens to us before our boys are grown and on their path (whatever that may be). Preparing them for everything we can possibly think of is just another way of helping them.
God Bless

Meltdowns...

The phone rings and it's the school's number - during the school day, and your kiddos are there... What's up? As the mom my mind automatically goes in a hundred directions before I even say, "Hello?". As a mom of autistic twins it goes to places I never would have even thought of before. I answered the phone the week before last to find out that Daniel was having a major meltdown. Nothing like anything he has previously had in his current classroom. He had been escalating for the past hour. Nothing that would usually help to calm him down had worked.

It was almost the end of the day already, so I asked my sister to go with me to pick up the boys. Since they are in the same classroom, I knew that if Daniel was "going off" that intensely, Anthony would be a mess. We went to the office, signed them out and headed for the classroom.

When we got there, the teacher, two instructional aids, the program psychologist and the principal were with there. The other instructional aids were with the other kiddos. Anthony's aid had taken him for a walk because he began reacting to Daniel. Daniel had become highly agitated and before he could "regulate" himself, his meltdown had escalated. It was almost an hour long meltdown. He had become extremely aggressive and was trying to bite, scratch, pinch, etc. anyone he could, including himself. He had never been self-injurious before, it had always been directed outward, to others that were within his boundaries.

One benefit to having your kiddos in a special needs classroom that's designed specifically for them (in our case autism) helps tremendously. Every kiddo and parent with autism knows that meltdowns can be a regular part of their life. Children in autistic classrooms have the benefit of the teachers and aids knowing a meltdown can happen at any time and usually does. They are trained to be able to help re-direct a child so that the meltdown doesn't escalate.

It had been years since Daniel had a meltdown that lasted more than 10-15 minutes. I think it's been more than a year since he's had a meltdown that couldn't be re-directed. Once a meltdown has really begun, all you can do is wait it out. For our kiddos there are three things that will usually start a meltdown: frustration over not being understood; over tired; or not feeling well.

Once we got home both boys fell asleep - exhausted. We did figure out that Daniel had been getting more aggressive in general since he began a new medicine. As he was increased on the medicine, he had difficulty going to the bathroom. Once we stopped the medicine, his demeanor changed for the better. Once he began going to the bathroom regularly again (which was just a day later) - he was back to his old self.

Letting his doctor know what had happened confused the doctor. Why? Because he had never heard of that reaction before. But we know that the only thing that really changed was removing the medication. So, he no longer takes that medicine. Everything is much better now, still looking for a replacement medicine, but not at the expense of our little guy feeling badly.

From a mother's heart - always remember that you are your child's best advocate. I don't care if the medicine doesn't list something as a "side effect", we're convinced it was the cause. Go with your instincts, especially for your kiddos. ASD,
God Bless

Faith - My Safe Place

No matter what happens on any given day I know that I am loved and that somehow everything is going to be alright. How? I have Faith.

I'm a woman, a sister, a daughter and friend, but more important I'm a child of the living GOD. I know that I, like many, many others have been chosen to be the parent of special needs children. For us... twin boys that are:

Amazingly Unusual Thoughtful Ingenious Simple Tremendously Inspiring & Cherished

They have autism spectrum disorder (ASD), and they are both so much more than a diagnosis. They are Daniel and Anthony.

They are our children. They are: smart, funny, loving, happy, and many many other adjectives I could fill page after page with. But, more importantly, they are loved. Loved by me, my husband, my family and many, many others. And most importantly, they are loved by GOD.

We don't have a lot of money or a lot of things, but I know we have what we need, and we are grateful for that. Whether it's because we are older parents, or we didn't have an easy road for having our little ones, I think it's helped us realize that it's not about us at all. It's all about our boys.

Like any parent, we want what's best for our children. We have learned that whether we want to or not, our life is like a chess game. A game of looking three steps ahead in order to make sure we are going in the right direction. We can't wait until the end of one school year to see if they'll graduate to the next grade. We have to constantly be setting up goals and making sure they are being met. In school, at home, in the world.

Our kiddos are the first thing we think about when we get up and the last thing we think about before going to bed. Many parents like us, with spectrum kiddos or other special needs, are more concerned with whether they'll be taken care of after we've passed on. College, apartments, spouses... these are luxuries we can't spend time wondering if our kiddos will have. If they do... AWESOME! If not, it's ok - as long as they are taken care of and can live a fulfilling and happy life.

It would be easy to focus on what they can't do (yet) and what they don't have, those thoughts depress me, which is why I wanted to write about it today. I'm not here to push religion or judge anyone. I'm here simply to tell you how I get through the day, whether it's a good day or a bad day. The same thing keeps me going regardless... my faith in GOD. It helps me stay focused on what matters to me and reminds me that there is only so much I can do. So, if I do my best, I can rest knowing that God will do the rest. He will make a way for us. I will trust in Him.

From a mother's heart - whether you believe in GOD or not, You are special and blessed and loved beyond measure. You have precious children placed in your care (or to help someone else care for). My faith is my safe place, what's yours?
God Bless!

Medication Adjustment....

For the last week we've been trying the "adjust" "correct" the boys' medications. The ever-so favorite and fun part of having non-verbal autistic kiddos (NOT). I feel so bad that my babes need to have medication for their ailments on a daily basis just to function in an acceptable way. Talking to the doctor at Daniel's ADHD (Attention Deficit Hyperactivity Disorder) follow-up appointment made me wonder "what does Daniel think about all this". I wonder what he's feeling, what he's thinking about, are we right about our observations and interpretations about what he's going through?

When a kiddo has ASD (Autism Spectrum Disorder) and SPD (Sensory Processing Disorder) and ADHD - it's hard to figure out which medication is going to work best. Since everyone is an individual with a different make-up, there is no one medication that works best for everyone. Having identical twins with the same disorders, they currently take the same medications, but we're finding out that even they have different medication needs. It doesn't help that they're non-verbal and can't tell us what's happening on the inside.

We took a long time to decide to medicate, like many parents with special needs kiddos. Once we decided to try any medications, we started with the most "extreme" behaviors first. For both boys it was "autism aggression" that first needed attention. Just out of the blue, he would lash out uncontrollably. Hitting, scratching, slapping, pinching - to the point that it had to be addressed for him to be in school. We also knew that it wasn't Daniel. The next thing to be addressed was sadness, the first medicine worked great - except, the side effect was like depression. Once that was addressed and taken care of Daniel was like our little boy again - so to speak. He seemed to be in balance and happy.

Daniel and Anthony both have ADHD, and aside from being driven by a motor that doesn't seem to stop, we hoped they'd "settle down" a bit when they went to school longer. (Oh how silly we were.) For those who don't already know, ADD (Attention Deficit Disorder) and ADHD are treated with stimulants. I still wasn't fully convinced how they'd work, but the first one we tried - did. We always try new medications on the weekend, so we can watch how they are reacting to it. About 25 minutes after we gave the boys the stimulant, they were out cold - they slept for about 2 hours and seemed more rested than they'd been in a while. I couldn't believe it.

In the same way that the stimulant worked from day 1, it quit working about 6 months later. We've tried no medication, a new medication that didn't work, and are in the process on trying a new medication now. Anthony is going through the same thing too, and next week is his turn with the doctor. We are hoping and praying for the right medication that will help both of them to be able to absorb all they can in order to help them communicate with us.

From a mother's heart - I keep reminding myself that when I'm dealing with my babes, it's all about them. Not what I may or may not want, but what they need.
God Bless