Doing my "Business"

Okay moms, we have all been here right? You have to go to the bathroom and do your "business" but who will watch the little kids. When they were babies, you could just leave them in their crib or bouncy. Toddlers, toddlers are a whole different ballgame. The climb, they run and they get into things.

Just when you think they're distracted enough, you hurry to the bathroom, close it, lock it, so you can start your "business" in peace. As you find your calm, there's a sudden knock at the door, a little voice on the other side asking to come in. You quickly respond "NO!" and they seem to go away. You gather yourself so that you can proceed. Two seconds later, you see the door handle jiggling. Ha ha on them, you locked it. Screaming starts. Frustrated they walk away. Now you are fooled into thinking you can have a quiet moment to relax and finish your "business" Or in my case, start.

A another few seconds pass, another jiggle at the door knob, "Dear God he is in!" And this is what happened next…

Doing my "Business"

Seriously, this is my life. I can't even go to the bathroom alone because my son has managed to figure out how to open every single door in the house. Yet somehow, he knows not to ever open the door when daddy is going to the bathroom. Seems I'm just the lucky one. To top that, when they are in the bathroom doing their "business" they kick me out, asking for "Privacy." Can you imagine that, privacy?! They have zero problem violating my bathroom time but here I am giving them privacy.

It's now gotten to the point that I have to schedule my bathroom "business" in the hours between my kids not being home or asleep. I'm sure somewhere there's a doctor who would tell me that that's bad for me. Oh well, that's life or at least that's my life.

With Love and dedication, anything is possible!

A one sided game of Hide'n Go Seek

With three kids that go to school and two that come home on the bus 10 minutes apart, the afternoon is the most simplified part of my day. After E gets off bus, we walk in for snacks. He and his sister have a snack and watch TV, I stand outside on steps awaiting the second bus to drop off my eldest. As soon as I hear bus at the corner, I walk across street to retrieve my son. For a brief moment, the bus blocks my view of the house directly across the street.

Joyfully I walk in with my eldest son, asking about his day and notice my daughter sitting alone where I had left them. E is not with her. I call out for him, no response. I ask her where is he hiding, she tells me she doesn't know. I don't have a huge house, 1,100 SqF. to be exact all on one level.  Everything either has a lock on it or an alarm to notify us if E is trying to get out.  I figure he is hiding on me. He loves to do that despite my telling him he shouldn't. I keep calling his name as I check rooms and bathrooms. All doors are closed but I open and check anyway. No answer, no E!

Panic begins to build up, I begin screaming for him.  Hoping my yelling will snap him out of whatever daze he may possibly be in. Pleading with him to please come out from hiding.  My other two kids screaming for him as well. I search the rooms and bathrooms again still screaming for him. I run outside now panicked. Perhaps I missed him slip out as the bus blocked my view of the house for about a minute. One of my biggest fears is that he gets out of the house and wanders away. He doesn't respond to his name often or on the regular. I was sick with fear at this point, as I live near a large pond, neighbor with a pool and three blocks from a very busy road.

Quickly, I gather 2/3 of my kids, run back in the house for one last run through thinking of spots I hadn't checked. I check all rooms quickly and this time under beds and in closets. One last door, my closet in my bedroom but that has an outside lock and door is closed. It was quiet.  There he was hidden behind my guitar case. "Surprise!" he shouts.  I fall to my knees in relief and tears. My oldest son, grabs him and says "You scared the jeepers out of me! You are supposed to answer us when we call you." He said what I wanted but was to upset to say at that moment. Seeing me distressed, E grabs my face and says "No mama, No." I imagine he meant for me to stop crying. He had no understanding of what his one sided game of Hide'n Go Seek had just put me through.

The idea of your kid getting out of the house and wandering off is pretty terrifying for any parent. Having a child like E who doesn't always respond to you, that is unaware of danger and can not say his entire name or address is even scarier. I can be in the same room as him and he doesn't acknowledge us right away or at all. All though he is improving in areas, he is not there yet.

"In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number."

-According to the National Autism  Association

That is why we have alarms and locks on all the doors. If he would have gotten out, it could have been a very bad situation.

Some may say, why don't you take them with you outside? One reason I don't take them out with me is because the bus is literally across from my house. I have a glass screen door that I lock just before I cross to prevent them from getting out but that I can still see them and visa versa.  The other reason is that when I do take the twins with me, as I wait they each want to run off in two different directions. Guess I will be popping them both back in the stroller again and deal with the screaming.

I started to think, what if E had gotten out or away from me? Since I can't microchip my kids, yet, I looked into other options for tracking & safety. First thing I did was sign him up for MedicAlert Found for Autism program  bracelet and shoe strap. It is free. This way if he did run off it would have his immediate contact info for  local law-enforcement, hospital  or who ever finds him can immediately call us or MedicAlert to gather medical and contact information.

Programs recommended by Autism Society for child safety

Autism Society

Take Me Home program - Database program

Smart911 - Law enforcement database for Special Needs

MedicAlert Found for Autism program  - Contact band that can be worn on shoe laces and wrist.

There are watches that you can buy that have a phone connection that allow you to track and even speak to your child. These are great but if your child doesn't like things on their wrist, I don't see how it will last. We are thinking of purchasing one and trying it out on our oldest son. I would love to hear from parents if they have tried this for their child.

Trackers - Here are some that we are thinking of purchasing. Since we are not affiliated with any of these companies we don't have first hand knowledge on how well they function. These are just some chosen by features and ease of use. 

AngelSense - Currently the only tracker designed for special needs children, especially those with Autism.

AmbyGear - This smart watch doesn't just track your child, they can track you as well. And as a bonus, you can set up calendar reminders and alarms to help them stay on task through out the day.

Weenact - Along with safety zone set up, a panic button, and two-way calling capabilities, this device covers all the must-haves that a kid needs to feel safe. It also comes with a long battery life—up to seven days—so you won’t have to worry about the device dying while your kid is away. $75. + monthly service

KigoWatch - $170 + $9 monthly service WORLDWIDE Great for people that travel a great deal. Not sure how well it works in US but really like the concept of this watch.

All that is left is to do is more research, check reviews and purchase one that offers what we need. Though I wish I could test them all out, financially that isn't feasible. If anyone reading this has purchase one of these or another type of GPS tracker for their child(ren), I would love for you to share your experience with it.


With Love and dedication, anything is possible!

Outbursts can be a learning moment

Watching my son have therapy some days is a delight. He seems to be on point and his behavior is calm and attentive. Often, E will be laughing and giggling with his therapist. But when he is out of sync with himself and therapist, it becomes far from a delight and more of a tense and painful situation to watch. 

Today E was receiving his speech therapy and I really thought it would be easy sailing for this session and it was, eventually. When he wants what he wants and is unwilling to transition and return to therapy, rejecting to sit is when things become challenging. Refusing to cooperate isn't uncommon for even a “typical” kid. For an autistic child, it can easily be a trigger into a long uncontrollable tantrum. In our case, it is currently dealing with fighting, screaming, head butting, hair pulling and the occasional biting. They can range from one minute to twenty minutes. Sometimes, we have no idea what has triggered him off and it can happen anywhere and at any given time. 

When you see your child behaving this way there is a level of embarrassment but also desperation to help them gain control of themselves. I want to scoop him up and soothe him but I would be doing him an injustice. He needs to learn how to calm down, to control his thoughts and body in order to get himself to hear what others are asking of him. Examples of what I say are “E, look at me” or “E, calm please, calm.”

For me, I find that “E, look at me.” is a great starting point to get him to calm himself. I whisper it so he focuses more on my voice, then I follow up with the request. Once I have his attention, I say it again followed by “calm please”.  Sometimes it works right away, other times it takes what feels like an eternity making me feel like an epic failure. While he is working on calming, my internal volcano is reaching its eruption point. 

Ironically, we must incorporate the same rules for ourselves. My husband and I will tag in or tag out like wrestlers when we see that one's frustration level or tolerance has maxed out and take a breather. This is the thing about parenting, that if you're fortunate enough to have someone to tag in it's helpful. If not, I give all you single parents big props because it's not easy. Each moment with our kids is a teaching moment from us but also for us. If we show them how to stay calm they learn. And of course, when I erupt like Mount Tambora, they are watching and absorbing mamas’ actions. 

Just as I don't expect my children to be perfect, they know and see that their parents aren't either. I take blame and show that I am remorseful. After all, we are trying to raise caring human beings. So after my son has his outburst or tantrum, he almost always says “I sorry mama.” If not, we explain him what he has done and ask him to say sorry. 

A few days ago, my son had a really big outburst because I wouldn't let him run into the street. He tossed himself onto the ground in tantrum mode. As I tried to block him from crawling to the street, he bit my leg, mad dog style. It was awful. Not because he was biting me, all though that was painful. It was because part of me thought, “My God, what must the neighbors think?” He was out of control and my frustration and embarrassment grew. I grabbed him and caught myself. I was worried about the wrong thing. I needed to refocus on E and not care about neighbors. 

After I pried him off of my leg. I told him “No E, you hurt me. No biting. Calm please, calm.” And after several tries, he responded, “Calm, okay.” When we entered the house, I checked my wound to find my leg bleeding. I show him and repeated what I had told him outside. He looked at me said “Kiss?” Gave me a kiss and rubbed my leg “All better. Sorry mama.” And I am reminded that he is still not always in control of himself but learning. 

By no means am I claiming to be a great mom or that my experience will fit someone else's. I am merely sharing how things work or don't work for us, at the moment. I would love to hear from other parents on how they deal with outburst. What have you found to be successful with your child? What has been a teaching moment for you both or as a family?

With love and dedication anything is possible!

Master juggler at the circus of life

All parents are the wearers of many hats. As a parent with a special needs child,  you become the master juggler at the circus of life.

Currently, I am desperate for my youngest to get into Occupational Therapy (OT) and Autism Behavior Analysis (ABA) which has helped him a great deal in the past. It also provided me some tools to work with him on my own as I was able to see the therapists at work. Since his OT resigned in July, we have not been able to find him a new therapist. Double whammy, his ABA line and coordinator both left around the same time his OT did. He receives some therapy at school but it is not enough and I do not partake in that. The state where we live has a tremendous shortage of OT's and the demand for them is so high that he is on a waiting list 3 to 4 months out. There are plenty ABA providers but there's also a waiting list and difficult to find one with a clinic. The place I'm dealing with seems to have lots to staffing issues.

Frustration levels can often hit a serious high when you are making all the calls, doing all the research and trying to find someone that has a slot that fits his/their schedules. With two other kids schedules to consider, it can get overwhelmingly frustrating to schedule things. It doesn't help that because E is still so young he is still easily distracted and needs to be in a place that is separate from others.  Distractions of "fun" equipment need to be minimized. By fun, I mean all the swings, beams, slides, etc that the OT gyms tend to have.

Currently, I'm in a battle with local ABA provider that has a clinic. Their lack of concern for my son is well, concerning. It's been since July that he has not received services despite the fact that I made sure all the paperwork was in place. Now I really shouldn't call it a battle since no one actually responds to me. The only effort is from my end. The Early Autism Project has failed my son for the past 5 1/2 months. Allowing him to slip through the cracks and not get the services he requires. I've done just about everything except send smoke signals to them demanding that he receive services. Not until you threaten to call the state and file major complaint, people start to respond. That's my least favorite hat to wear because I understand that with complaints comes the risk of people losing their jobs. I don't want to be that person but it's my son, so I do what I can for him. Then, when they come with all the services you need, you're not sure you want to deal with them because they have not handled things professionally. But you know you have to cave because what other choice do you have, minimal. 

At the end of the day, we are not just parents. We are different kinds of therapists, a secretary, record keeper, Accounts receivable and payable, insurance coordinator, nutritionist, mediator, litigator, transporter, mind reader, translator,  master healer of boo boos amongst many more titles. The most important is warrior parent. Fight for the right of your child(ren), make sure they get all the services they need in the time in which they need them. It makes all the difference.

Would I change my life? I'm not going to lie, there are days where I just feel like checking out. When everything seems to be just a little bit too much at once and it feels like there's no relief insight. That if one more thing is piled on I just might drop all the balls I'm juggling. That to many sleepless nights have added up and you're just exhausted. Then my son will come up to me and say "Mama, Huggies" with his perfect brown eyes.  I remember how last year he couldn't even say mama and how he would refuse my hugs. This makes it all worth it. So I go on. 

My son has autism. There's no changing that. He isn't broken, he is just different.  I am stronger each and every day for having him in my life. We count our blessings. 

With Love and dedication, anything is possible!

Coping with no sleep PART 2

I have mentioned in the past about how lack of sleep was really getting to us. How we were seeking out solutions to try and help our three year old get to sleep and sleep through the night. If the lack of sleep was affecting the adults, we know it was having an effect on E too. Well I think we have found a solution that for the past 5 weeks has been working for majority of the nights.

Not to long ago, I read a medical journal on children with Autism and sleep disorders.  Here is the link to the article on Autism and sleep disorders that I shared recently on my Google+. E took about an hour or more to fall asleep so we started giving him melatonin. Which absolutely helped him get to sleep fast but he was waking up nightly at 1 pm and staying up until about 4 or 5 am. It was weighing on us all. We just couldn't get him back to sleep. We went from giving him 1mg, 3mg then 5 mg. After that, we stopped increasing because despite it being natural supplement, we didn't want to over medicate since he is only 3 years old.

In the article linked above, I read something that raised an alarm bell. "60% reported improved sleep, 13% continued to have sleep as a major problem, 1% had worsened sleep after initiating melatonin, and 1% could not determine the response."  He was falling asleep fast but  we did continue to have sleep issues. And in some days it was worse then ever. So I asked myself, could my son be the 1%? 

I resisted the article where it the talked about bedtime routines and sleep training, as well as listing some other items and tasks that can be taken to improve an ASD childs sleep (image to left).

The first thing we did was stop the melatonin and naps. We were stressed out at even the thought of this but we needed to try this. Parenting is work and looking for the easy way out isn't always an option. With a child with both ASD and SPD, we know we have to put in the extra time and effort for all our sakes. We make sure he has some sensory play shortly after dinner usually high impact like trampoline.  A warm shower and bath always seems to help after. We set an alarm so he knows that it is time to get out of bath. He responds well to that.

Then we get him ready for bed while constantly telling him it is bedtime. We let him wonder his room a bit, clean up and close closet and bedroom doors. Then he tucks in for a digital or storybook. He likes to snuggle on the floor on top of pillows we have spread out for him on the floor. This is were it gets tricky for us.  We have a car seat in room incase he is to wound up. We use it as an alternative for compression to calm his nerves. But when offered the alternative, he usually opts for laying down and getting a massage. When he says car seat, we know even he is aware of how out of control he is. The massage helps and a gentle vibration or rocking of his body.

Sleeper sack

In addition to pajamas, we place him in a zip up sleeper sack, zipper to back so he can't escape. This allows his legs limited mobility and his legs don't feel restless. Also, slows him down from moving about. They are inexpensive and we have one for summer and one for winter. He loved it as an infant so we thought we would try it again.

Compression seems to work for him as well. I made him a weighted blanket and he is not a fan. The alternative were these types of sheets that wrap the blanket and you can slip in like a letter in a envelope. I didn't want to buy one and it not work, so I made one with an old fleece blanket. Once he is asleep on the floor, we transfer him to his bed. Tuck him in making sure he is snug but night to tight. We want him to be able to move comfortable in his bed while still receive the compression he needs.

So did it work?

With all of these items and efforts, I can happily say E is sleeping through the night the majority of the time for the past month. He is definitely doing better with attention and seems over all happier, as are we. It's a lot of work and getting him to sleep is still the hardest part but it pays off. We start bedtime every night at 6:30 pm and he is usually asleep by 7-7:30 pm and doesn't wake up until 6 am the next morning. It's awesome. We are always so happy when he falls asleep with in an hour and that he has a successful nights sleep. Happy dance!!

This is our experience. Maybe you have tried this and had a different experience with your child. Every child with ASD is different, unique. Down the road these efforts may need to be tweaked a bit or may not work at all and we will have to find new ways to help him. Don't let the frustration and lack of sleep get to you as I felt it was getting to us. Your child is relying on you to help them figure things out.  Work with them. Observe what they like through out the day, recall what they use to prefer and see how it could be implemented in helping you get your child a better nights rest.

With Love and dedication, anything is possible!