Mr. Anxiety

Recently, my eldest son was complaining of throat pain. So we needed to take him to the doctors but that also meant we needed to prepare ourselves mentally and emotionally for what would be an anxiety inducing visit from Mr. Anxiety. 

N became fixated on the fact that he had to have a tongue depressor used on him. He hates the taste and the feeling of gagging. The entire trip to the doctors he kept asking “Do they have to use that stick in my mouth Mama?” Where I repeatedly responded “they will need to look at your throat if your throat hurts you.” Later adding “what do you think they are going to do if your throat hurts?” I was needing him to stop asking over and over again for my own sanity but I knew full well that this would not be the case.

When we arrived at the office it was clear he was stressing out. Hands curling into fists, sweaty hands constantly being wiped on his legs. Getting up and down from his seat while still asking me the same questions about the tongue depressor “Are they going to use the stick?”

When we entered towards the patient room, he started on the nurse. Asking the same questions and stating his dislike about the entire process while she just tried to get his height and weight. 

Once in the room, he fought the nurse and wouldn’t allow her to swab his throat. Moving his face away or swatting her hand. Impossible and clearly frustrated, the nurse left the room hoping the doctor would have better luck. I can understand how frustrating it is for someone who is trying to do their job but I wish others would try to be more empathetic to his state. 

While we waited for the doctor it just added to his anxiety. As he sat there, he came up with alternatives “Maybe I can just stay sick.” Or “I’m feeling much better, let’s just go home.” His legs shaking, tears in his eyes “I just can’t take this anymore!” Panic now in the room. I remind him to breathe and recall his “Peace Out” podcast that sometimes helps him calm down and work through his anxiety. I passed him my phone to try and get him to find his calm.

Enters the doctor and “Anxiety” completely takes over. He bursts into tears and panic. His arms go into protective mode, swatting the doctors hands away. Enters “Fight or Flight”. The doctor works slowly and patiently with him, then comes N’s dreaded moment, the cotton swab. The doctor says “I’m not going to use the tongue depressor. Just this swab.” N interrupted him “it’s still a stick! WAIT! I don’t want a stick!” Moving his hand away.

Then I gently take his hands and tell him to take a breathe. I urge him to listen to the doctor who is only trying to help him. The doctor tilts his head back and asked him to open his mouth. A small struggle and done. Tears running down his face, N is upset but when he realizes it’s over I see his shoulders relax, he gains control of his breathing and anxiety slowly leaves the room. He returns to his usual happy self. 

All that build up anxiety, as the thought grew bigger and bigger in his head spiraling him out of control. He would get calm only to work himself up again. For me, it seemed so simple to get the throat culture. For him, it was as if someone was going to wound him. The mere thought of the taste of the tongue depressor was enough to send him into a frenzy, snowballing out of control. 

People often look at my son always surprised to later hear of his diagnosis of Autism. I often hear “He doesn’t look Autistic.” This frustrates me. What are they expecting? Should he be rocking in a corner somewhere staring into the void or spouting out random gibberish? What they don’t realize is that Autism presents differently for each child. For N, a huge part of it is Anxiety. He can become fixated on ideas, thoughts on how things are meant to be, the way things function until his fears become paralyzing. In this case it was how the tongue depressor made him feel. I know comments like this aren’t really judgements but ignorance on their part. They don’t know him, his diagnosis is not a star upon his chest and we don’t willingly promote it to everyone we meet. 

It is important to find healthcare providers who understand the function of Autism and it’s many ever changing variations. NEVER assume that because they are pediatricians that they fully understand the scope of Autism or any other disability. It’s important to discuss these things prior with doctors. Though the nurse didn’t handle this the way I would have preferred, thankfully, we have a pediatrician who is patient and educated enough in the matter to not rush the process. So glad we did go to doctors because it turns out that N did have Strep throat and had I given in to Mr. Anxiety and forgone the check up, it could potentially have gotten worse. 

Since we can’t change the world to adjust to him, I can only teach him how to adjust to the world. There will be days like this where any advice I give him doesn’t help. Where his tools fail him. Where anxiety is the driving force. We will have to just keep up the repetition, practice the situations with the hope that each time will get easier for him. 

How do you handle a nervous child? I would love to hear your experiences and what worked for you. Until next time...


We are blessed for sure!

With love and dedication anything is possible!

News Story - Airlines grounds crew

I wanted to share this news story about a family who was traveling and denied travel arrangements because of what seemed like discrimination or just pure ignorance on the part of the airline crew members. Something as easy as switching a seat for a special needs person could not be accommodated for whatever reason is disheartening. It still amazes me how people are still so ignorant and how call ace they can be. 

Read the story and see what you think. I for one, was taken back. 

https://apple.news/AKynpk2p4T8yDrQr_b50Cwg

Back to School already?!

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The start of the morning was the same as it has been all summer, kids crawling into our bed, wanting extra cuddles and trying to get a bit more sleep. My daughter and my oldest boy starting looking for a way around going to school. As if there was a way out of it. With all the energy I could muster at 5:45 am I said “OH NO! It’s first day of school and we are not starting the year off wrong. Happy faces and lets get going.” My youngest son however, ignored the siren alarms of his clocks. When I walked in, he went and turned off his light and said “It’s too early and I too tired. I going back to sleep.” Eventually, I was able to evict him from his room and get the day started.

Even with a daily chart that lists EVERYTHING he is supposed to do, N just couldn’t get going or didn’t want to. He wanted to have a debate on what he wanted to now wear and a discussion on how the girls were going to love him this year. LOL! To which my response was “Ummm, NO!” And I moved him along to the bathroom to complete his am routine. He cracks me up. We took our first day of school pictures.  I couldn’t fit it in but in addition to his wanting to be a veterinarian, he wants to be a paleontologist. I reminded him that school was the way to get there. After breakfast, he danced and hopped in the car to make a start for a brand new year but not until he blew me a kiss and said “Make good changes in the world.” Oh my heart loves him so.

My daughter, who is almost always the first to be dressed was ready to go and looked dazzling this am. There was a bit of whinnying but she slowly started to show her joy about the start of the school year. She looked so cute,  wearing her frilly skirt and laced top. Ready to take on the school and show them what she’s got. She couldn’t be happier.  I asked her what she wanted to be when she grew up and she said to no surprise “Artist and MARINE” That last part was a surprise but I think her father coached her into saying it, so I didn’t add it to the board. We had breakfast, did our morning group dance and off we went for drop off. I love dancing with them all in the morning but she looked so happy it was contagious.

Dad would take care of drop off for my daughter and oldest son, while I got E ready for his drop off. He didn’t want to eat breakfast so that would be a meal he would have in the car. He happily allowed me to take a picture and insisted on how to take the group shot. He is an awesome little boy. Then he fought a bit about what sneakers he would wear but he surrendered once we told him that the old sneakers were dirty. We danced to his favorite song from Bon Jovi “You Give Love a Bad Name” and off we went.

On the way there, E asked me “Mama, Am i going to Mr. M?” I assured him he was not going back to that old school and would never see Mr. M again. I could sense his fear as we drove to school. He asked again “Mama, Am i going to my old school?” I again assured him that he was going with the “Nice teacher, Mrs. Lewis” As we approached the road to his school, he said “I think I remember this school” and I just did my best to keep reassuring him that he was going to be okay. That I would NEVER let him go back to that school. We drove up to the drop off and he refused to get out even with me at the door.  As the teacher walked over, I told the teacher that he needed to see her and what he was experiencing. When he saw her, he allowed the door to stay unlocked, I opened the door and he let out a sigh of relief and said “High five Mrs. Lewis?” She gave him that high five and told him he would be okay. With all the things he forgets, this wasn’t an experience easily forgotten. I wanted to cry. Even as I write this I want to cry. What he must have suffered to still fear that place and that man. And when think I played a part in it, it just tears at me. He put his book bag on, walked over to give me a kiss and said “Bye Mama” smiled his big smile and disappeared behind the door. My sweet ‘possum.

My daughter had asked me if I was going to be happy with them going back to school and though I joke with them, I told her “Mama likes when you go to school because I know you are learning and able to play with friends but Mama will also miss you because I love having you near too.”  It isn’t easy leaving them in the hands of others. Especially after the year E had last school year. He isn’t the only one that has to learn to trust again. I just keep praying for a better outcome while vigantly doing my best to keep them all safe.

Here is to hoping and praying that they have a safe and happy school year.

We are blessed for sure.

With love and dedication anything is possible!

Enter the World of Meds

Not to long ago, we succumb to the idea that our son may need a little more help when it came to self control and impulsivity. We had done so much with Behavioral Therapy in hopes that it would help curve some of his maladaptive behaviors but then Early Autism Project just dropped him. The same therapy that is meant to work with and improve those behaviors, used his behavior as their excuse. It was repulsive really but while we were in search of a new ABA provider, we knew something needed to be done to keep him and others safe. Enter the world of Meds.

We met with his Behavior Pediatrician and discussed our  medication options. You may recall me discussing this in one of my other posts. I had genuine concerns about how the medication/s would affect him. My worry is that he could get worse, that the medications could mess around with his young developing mind or that it could be lethal. All reasonable thoughts and concerns. These medications are all stimulants and he is only five years old my feelings were legitimate.

The key for us is that he has a wonderful Behavioral Pediatrician who heard my concerns and understood E’s situation. She knew he was a very bright boy with a vivid imagination who often had sensory and major impulsivity issues that presented poor choice making and sometimes extreme aggression. I wanted to help my son before he hurt himself or someone else. He is super strong and I knew it was only a matter of time. So we agreed to try a drug that was a Non-stimulant first, Guinifance (Tenex). There were some risks involved as it had never been tested on a boy his age but they outweighed the other stimulant side effects so we started him on it right away. To start the dose would be very small, that would increase slowly but not exceed 5mls a day.

We slowly worked him up to 3.5 mls in the am which lasted 12 hours and a second dose of 2 mls once at home. He was showing signs that the medications were working. He was listening to instruction better and was taking naps right after school. However, problems started to present themselves in different ways. He now was falling asleep in class despite having a good nights rest and his blood pressure was a bit low at times. After meeting with doctor again, she decided it would be best to lower his meds. We then went from 3.5 mls in am and then no medication upon arrival home. Then a few weeks went by and he was still showing the same issues but then things managed to get way worse. The school nurse called me stating that he was cold outside but it was 90 degrees out. When they brought him in, he fell asleep and when she took his BP it was dangerously low. The school RN hydrated him, called the doctor and sent him home. The doctor immediately called me and told us to stop the medication all together. At this point, I had already decided this as well. I rather be dealing with the impulsivity and hyperactivity then risking his health or worse his life.

Now he is taking nothing prescribed but is doing a few things differently suggested by the Behavioral Pediatrician. He drinks a small bit of coffee with milk as it has a reverse affect on his hyperactivity. I am sure plenty of parents would be against this idea but I was fine with it. Culturally,  I grew up with a grandmother that gave us coffee and milk as small children so I see no harm in it.  The only issue is that I can’t give him that at school. So I will cross that bridge when we come to it.

We also tried Chamomile drops but it gave him a severe rash. Strangely, he doesn’t have the same reaction when he drinks the brewed tea. He took Genius Drops for focus and attention but that ironically made him more hyper. I have also started giving him vitamins with Omega’s to boost his neurological development. Normally, he refuses all vitamins especially the gummy type ones but he takes this liquid just fine. It is strawberry banana flavored and he and his siblings love it too. The entire family loves Barlean’s Omega-3, and it is highly recommended by our family. For everything else, the search goes on.


We are blessed for sure.

With love and dedication anything is possible!

Divine Intervention

This afternoon I was feeling really low, after I was told my son would not be able to stay in his current Occupational Therapy sessions unless I signed a Safety Agreement. The agreement is to protect the staff and patients from him. Ultimately it says, they would kick him out if he showed any aggressive behavior and or possibly call the police, if warranted.

You hear it and you get it, they have to protect themselves and the other patients. I even went in thinking they were going to ask him to leave. Instead, I get a generic boiler plate. The wording enraged me. He’s 5, he’s Autistic and he is impulsive, with current aggressive outbursts emanating from behavior extinctions. A well trained staff would know how to deal with this. Working with an Autistic child that has aggressive tendencies can be challenging but you expect the professionals to be prepared to deal with such issues prior to taking them on as clients/patients.  Trust me, if I could change that about him, I would. I know no one ever wants to be hit by someone else. Believe me you, we have tried to help him and continue to try each and every day. 

This place has been working with him for nearly two years now. He has a major meltdown and they just sit me down next visit and give me a letter. I sat there for as long as I could, then just got up as they talked, told them I would look it over, maintained politeness and just walked away. I was scared for him while he received therapy that hour. I was not going to sign this letter. I wasn't going to give anyone the right to threaten me or my son with arrest for behavioral issues. With all they said and with what the agreement said, I just felt as though I was failing him. I felt awful and frustrated. 

Along comes a staff member, who recently started working with my son and tells me that she loves working with my child. She said “I really give it to you, after last week, I realized it can’t be easy and you’re such a great mom with them. I just love your kids. They are such good kids. You are doing such a great job. I don’t think I could do the same.”

She may not realize how much I needed to hear that at that moment. All I could tell her was that I appreciated her saying so. She provided the boost I needed to shake it off and do what I needed to do for my son. As he was receiving therapy, I decided it would be his last there. As he was working, I got to work too. I found a place that was properly trained to deal with a child like mine.

These things are often hard to hear though you understand the rationale behind it. You just hear your child is not achieving the required goals. Your child isn’t behaving like the other kids. Your child is not accepted. It’s crushing. And yes, I know they may have never actually said that to me but that’s what it comes down to in the end. He just doesn’t follow along. So they refuse to work with him, they discard him.

I can't be alone. Can I? Has this ever happened to any of you parents out there with a young child with Autism?

We clearly have our challenging days but we get through them and move on. Sometimes with a little push of support from someone or maybe, just some divine intervention.  

We are blessed for sure.

With love and dedication, anything is possible!

Autism Island

I absolutely understand where dad, Shane, is coming from when he spoke out on Facebook about his sons forced isolation.  Isn't this just another form of bullying? Maybe, maybe not. Every kid certainly has the right to invite who they want to their own party. But...

My now almost 7 year old son was invited to only one party last year and before that none, other then family functions. No invites for him this year either. Does he think about it? Not really, until he hears the kids talking about a party coming up or one he missed. Then it's an hour long conversation about how there is nothing wrong with him, some kids just don't realize how special he is or that not everyone is meant to get along.  I have seen kids be treated badly because they are  "different". We can't put the blame on children alone, I know that the parents have a lot to do with this. I have seen parents give me looks or directly make comments about my youngest son and MY parenting skills. One woman told me not to bring my son to play dates anymore with his sister. She just felt it was "too much to deal with" for her and that it would be "calmer if he wasn't there". Needless to say, I deleted her number from my phone but only after telling her a few choice words.

Instead of passing judgment, parents should take these opportunities to teach their kids about something outside their own personal box. Different isn't a bad thing. Trust me, I know it is impossible to live in a world where we all get along. Personally, I know I am may not get along with all my neighbors but I am not going to treat them badly because we may see things differently. I will continue to be courteous.  I certainly would never exclude a neighbors child from one of our parties simply because I don't like the parent(s).  I'm not asking that parents force their child to be best friends with mine or have them over all the time. I'm not conducting a social experiment with my kid. It's just a small moment in their lives to show acceptance and understanding amongst their peers rather then being out casted to Autism Island.

Both my boys have the sweetest hearts and our unbelievably loyal, they just happen to have Autism. People that make the choice to exclude them are missing out on a teachable moment for their kids. For themselves as well. Yes, they have difficulty sitting still, they talk too much, too loud, or do not speak at all. Yes, they may not acknowledge you when you address them right away or at all but there are ways to help them participate. Leave it up to us the parents to navigate them through that social experience. They just need to be given the opportunity. You the parents of the "Typical" kids could teach your child kindness, patience and understanding.

Shakespeare wrote "If we’re like you in everything else, we’ll resemble you in that respect." It is simply paraphrasing the Golden Rule but in the story, The Merchant of Venice,  it speaks of the negative aspect of treating others badly and its chain reaction. So I have found that connecting with other like minded parents works best for us. We may not all be best friends either, not all of them have kids with Autism but what they do have are kind and open hearts and their kids share those qualities with mine. Acceptance is a hard thing to find in this world but that falls on us.

In the end, isn't that what we want for all of our kids, to be kind and accepting of others, so that others may be kind and accepting of them, no matter how different they are?


We are blessed for sure.

With love and dedication, anything is possible!



To learn more about The Life of Reilly click the link.

Kudos to Reilly's mom, Christine and especially dad, Shane, for saying what so many of us often feel needs to be said. Keep up the great work in teaching us all.  And to Reilly, who unknowingly is teaching the world with out saying a word.

A question about Autism

My daughter came up to me today and asked me a question. I was kind of taken off guard when she asked me this question and honestly at the moment, I didn't know how to respond to her. I didn't imagine that at four years old she would be asking me this already. I thought maybe I had at least two years before we dove into this. She asked me "Mama, why does Ethan always have to have the autism?"

We have had her watch Sesame Street's introduction of the new character Julia,  that has Autism. So she does know that E and N have Autism. She seemed to understand it, asked some questions and she seemed content with my answers. So it seems now, she has more.  I took a deep breath, took a moment to think about my answer and came up with this.

"Well, you see Pudding Bear (nickname), that's just the way God made him. It's not a bad thing, it's just the way he is."

She then told me "but I want him to be just like me." Hearing this kind of made me sad. Sure things would be easier if E didn't have Autism but I wouldn't trade him for anything. To me, he is perfect.

Then I told her this, "Just because someone isn't like you, doesn't make it a bad thing. Being different is what makes us all special in our own ways. Why don't we treat E like he doesn't have Autism. Treat him like you would want any one else to treat you. When you see he's having a tough day and a hard time, show him kindness, care, patience and love. That's all anyone really needs baby." I watched her as she thought about my answer.

She sat there quietly for about a minute, which is a lot for her, shrugged her shoulders and said "okay mama."

Then she walked over to her brother, patted him gently on the head and asked him if he would like her to put a movie on for him. She gave him a kiss on the head, walked away to get the remote and called me over to put his show on. It was a precious moment.

I can't say I handled this expertly and maybe some of my answer didn't compute with her but I am happy with the results. She showed care and compassion to her brother. They don't always get along, most siblings have their days where they just don't get along and parents become referees. With E's temperament, it happens more often then not.  Which is why I think my daughter posed her question, out of exasperation. That said, they have really good days too. Where they tackle one another in hugs and cuddles. Those moments much like how this discussion with my daughter ended are awesome.

We are blessed for sure.

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!

Food Aversions or a.k.a. Picky Eaters

Toe so good

Moms always complain about how their kids are picky eaters, it can be so frustrating and concerning.  You want your child to eat and eat healthy choices but picky eaters have a different plan. A picky eater with Sensory Processing Disorder (SPD) and or Autism (ASD) can be even more troubling.

My son is probably the pickiest eater I have ever dealt with. Honestly, most days I think he would sooner eat his own toes then eat meatballs or mac and cheese. Seriously, I have seen him eat a crayon no problem but roasted chicken, no can do. In order for E to eat something, especially a new food, he has to allow all his senses to approve the food item before he eats it. Its a process that he takes time with.

Here are the steps E goes takes before eating something.

Step 1: Looks at food
He stares at it from a few different angles. At this point, if he doesn't like the way it looks, it's on the floor or he starts screaming. He use to freak out over diced carrots.

Step 2: Touches food
If we manage to get to step two, he gages feel, temperature and texture. E tends to like food that are either really hot or cold and in the white or beige family of foods to touch. It will end up on floor or it passes to next step.

Step 3: Smell
So this is where E simply smells the food. Disapproves floor, approves next step.

Step 4: Taste
This is where my son will decide if he will bite the food. E takes a lick or simply touches his lip or tongue to the food. If it passes the test he will take a small bite. I mean small, bird size. Often the food ends up on the floor because he took so long to get to step 4 that the temperature is no longer how he wants it or he doesn't like the texture of the food item when chewed.

Right now E lives on Greek Yogurt (Banana only), bananas, smoothies with veggies snuck in, Keifer shakes (Strawberry only), almond milk, bread untoasted with Honey, bread with Nutella and Chocolate chip granola bars. Just recently he has stopped eating pizza, has tried chicken nuggets but they must be hot and banana with Nutella. He seems to like his things on the sweeter side. It's fairly healthy but I still feel like I could get him to eat more veggies and solid proteins. Perhaps that is every moms plight.

I long for the day that I can make a pot of Mac and Cheese, place it in front of my son and he eats it. Maybe not even all of it but a bite or two. In the meantime, we test out foods and hope for the best.

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Building a Strong Team

For the past year, my son was already receiving Early Intervention and we built a team around him that is strong. Here's why I think having a strong team is so important not just for the child but for the entire family. 

Let me first explain Early Intervention. Early intervention includes but is not limited to the following services:

- Provides families with a plan
- Supports services and resources for children that enhance daily opportunities for learning
- Provides visits in settings where a child would be if he/she did not have developmental delay/disabilities "Natural Environment"
- Special instruction/family training/support
- Organizing nursing services, social work services, nutrition services (food therapy)
- Assistive technology devices and services
- Physical therapy (PT)
- Occupational therapy (OT)
- Speech Language Pathology (SLP).

In a nutshell, the Early Interventionist (EI) assists in meeting the needs of the child as well as the needs of the family.

Back in July of 2014, I had my son first evaluated to see if he qualified for Early Intervention through BabyNet (a government organization that helps with special needs children). When I was told that he did qualify for further evaluation. They sent us to another place where I had to fill out some paperwork on him and sit and answer questions regarding his behavior. They sat us in a room, asked him to tend to a few tasks while also doing things around him like blowing bubbles or making noise. Thirty minutes later, we had a starting point. It came back that he might be autistic so we very quickly started the process to get him the help he needed. 

First I lined up his Early Interventionist (E.I.) to assist and support me in getting all the therapies he would need. We chose Carolina Behavior and Beyond because they came with great referrals and the founder has a very personal understanding and relationship with special needs. Through their evaluation, we new he needed Speech Therapy (S.T.), Occupational Therapy (O.T.). Through the BabyNet evaluation we knew he would need ABA Therapy (Applied Behavior Analysis is the application of the principles of learning and motivation from Behavior Analysis.) 

We were fortunate to get his Speech Therapy through Columbia Speaks Speech Therapy in just a few weeks. His ABA through Early Autism Project which took about two months and Occupational Therapy took about three months. Occupational therapy was the hardest to find. One because the surrounding area doesn't have enough Occupational Therapist and two, not enough of the OT's are trained well in Sensory Processing Integration.  His OT started out at Palmetto Health Orthopedic Therapy and all though they tried to help him there, I just didn't feel as though it was working out. He wasn't getting much accomplished. So when the wait list opened up at a new location, I jumped on it and he now deals with SPROUT Pediatrics for Occupational Therapy. Here I feel they are more knowledgable on the subject as they already deal with kids with Autism and or Sensory Processing Disorder on a regular basis as well as having a personal connection. Though I would like to have him receive Food Therapy for his food aversions, I am more focused on getting him talking, attending to his tasks and connecting so I try my best at home on my own but it will come in time.

It was important to me as a mother to know that the team I surrounded my son with are people who truly care about him first. I couldn't be happier now. It isn't perfect (what is?), we have had some bumps in the road but I feel supported and my son has been showing great strides in improving his speech, connection to us and the world around him. It's been only ten months since he has been receiving all of his therapies and he his speaking more and more., Engaging with us and learning more every day. He still has a long way to go but he has a strong team and I am confident he is going to be okay. 

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Diagnosis Day

You prepare yourself for D-day. You suspect it, you convince yourself that the worse case scenario is still better then most. Convince yourself that diagnosis will help. You say the word/(s) regularly to reduce shock value. You do your best to prepare but the news is coming and your still not sure if your ready. Then you hear the words "I summed up his ADOS among other things with my notes...." What seems like longest pause ever. " And well, it looks like your son did test for Autism." Crash! It's reality.

To some extent it was a huge relief but also a big let down. We heard a lot of mights, maybes and ifs but nothing concrete. More then anything, I was relieved because we finally knew what he was dealing with. Yet the mom in me, the irrational part of me, wanted to cry, wail because how could my "perfect" boy have Autism. 

You go through all the scenarios even while the doctor is spitting information at you.  I'm thinking, I just didn't take enough prenatal vitamins, I was to old, on to much bed rest, not enough rest, stress, twins, maybe the IUI drugs, etc.  Words and thoughts swirling in my head like a cyclone. What could I have done differently? I tune back in to hear "tested low to medium." That's good, right? "Yes, that's good." 

Then Doctor C. begins to discuss game plans for him. Many which we already have placed, speech therapy, occupational therapy, ABA(Autism Behavioral Analysis), school. She reassures me that he will be more then fine. That he is very bright and has come along way in only 10 months of early intervention. I remind myself that only 10 months ago he had stopped talking all together, wouldn't look at me or even let me hold him gently. I knew even then, I knew but now I know. 

To some aspect I guess a mom always knows but denial can be powerful. Even as I started him down this process, I fought my denial in search of answers and I got what I wanted, an answer. The answer is Autism. 

Of course, now I have a million new questions and a new search for answers but the most important answer I have is that my son will be okay. My son may be living with Autism but he is not Autism. He is perfection, beauty, brilliance, lively, happy, unique and a loved little boy.

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