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!

A full day, play by play

This morning started off with great calm. First E woke up but still wanted to cuddle which was fine with me as it bought me a few more minutes of sleep. Much needed rest since I stayed up most of the night worried he would wake up and "explore" his way out of the room.

We headed out to eat which was surprisingly not a disaster. I am not sure if the coffee drop I gave him helped him relax and enjoy or if it was still early and we sat far back in the restaurant where it was less noisy. Either way, he sat ate some of his meal without raising a fuss. N just kept reading so we had to constantly remind him to eat. Only towards the end when we all were wrapping up did E start to get a bit difficult. Fortunately, it was just as we were getting ready to leave so that saved us from public scrutiny.

After breakfast, we went to the beach, which was nice for the kids. I am not sure I handle the beach well at all. Actually, I am positive I didn’t but with good reason, I think. My husband and I disagree here. I feel it is important to teach basic rules first and then we can explore extending those rules. For instance, I believe it is important that E be aware of the dangers that the beach presents and the importance of NEVER going into the water past his ankles because he can’t swim and can easily be slept away. Also, if he understands these rules as Gods word, then my hope is that if he ever finds himself alone near a body of water, he will not enter it with out his grownup. On the other hand my husband believes that I should let him have fun as he inches his way past the acceptable zone just because he is present and allows E to set the limits. If I wasn’t there, I am sure he would have been further out. I should note that my husband can barely swim, so having him on swim guard is a bit unnerving.  An adventurer himself, he forgets about the dangers or the importance of rules and structure for a child like E. Either way I was stressed. N kept asking me if I was OK which made me feel even worse. I wanted to have fun with them, it was just hard.

Then they were supposedly going to the playground but E hoodwinked my husband and took his chance and ran (Dad gives E way to much space between them), E proceeded to run up a twenty foot staircase to go down a slide I forbid him from doing. Then when I tell them both that I saw what happened, my husband tells E, “I told you that we would get in trouble.” That didn’t seem very supportive but I guess someone had to be the bad guy. My husband does try and I know he is just trying to be the best dad he knows how to be. I just wish he would really hear me when I express my worries and concerns in situations like this.  I’m sure he has a few choice complaints about me as well. In any case, I tried to push through though under my breathe I did say a few choice words to my husband, who I think desperately wishes I was a bit easier to deal with too.

After a short break in the hotel room for lunch, the kids wanted some TCBY. We wanted to see them enjoying themselves and needed to get out of the room so we went. All three were wonderful. They picked their flavors and sat , most of the time. My daughter was wiggly but ate with out being told. E was overjoyed but became fixated on where the man went that served the ice cream. At this point, he started searching the TCBY for him. Wanting to go behind the counter.  So that was small, but we easily redirected him and were able to get out with no issues.

Ripleys - E was in no mood for pictures

Then against MY better judgment, we went to Ripley's Believe it or Not. Honestly, I was going to divide the kids up at this point but E wanted to go. I hated the idea of leaving him out in the first place, so I said we would try it. Worst thing is we would have to leave. Actually, the worst thing would be us tossed out for E breaking something but I was hopeful he wouldn’t.

Things started off wrong right from the start. E wants space. He rarely likes to hold hands. Often I am tugging him back or running after him. He refuses to where a harness so the moment I tugged him and reminded him to stay close or to stop trying to put things in his mouth, he screamed as if Lucifer himself had shown up. I gave him some space while cornering him off waiting for calm and speaking to him with a gentle voice, reassuring him that we were going to go in. Once in, I tried not to restrain him to much but stay close. Dad did his job in monitoring E while I tended to the other kids. E always looked for me when he wanted me to see something but I don’t think he would have called for me if he was lost in the crowd. He was like a pinball, bouncing from one exhibit to the next. The stress was elevating for all of us and I could see he was excited. Excitement often leads to unpredictable behaviors. We are still working on expressing excitement.

Ripley's was over and I was relieved. As we walked back down the stairs, it led us to....an

Of course it’s an alien game

ARCADE!! Oh the horror. Forget the spooky Oddities they had, this felt like a nightmare. Immediately, the chase was on. It was “Oh, can I do this one?” as he ran from us to do it. My loving husband, who wants to see his kids happy said yes before I had a chance to reply to the request. I could have done without the running around but the kids did OK for a bit.  My daughter was a champion player  on the nerf game and even beat her big brother a few times. It wasn’t until the money ran out that E had a full on meltdown. First sitting on the floor staking his claim to the game he didn’t get to play. Here it became a challenge for me. Usually, I try to remain calm as strangers with their judging eyes glare at us but this is often anxiety inducing. I get down to his eye level but he turns from me. Pro move. Then I touch his arm and he screams as if I was trying to abduct him. He starts hitting and tried to bite me. Now I’m having hot flashes and tell him, “I’m sorry E but we are done. I have no more money to spend here. Enough!”

He walks out only to sit outside and protest a bit more. I tell him that “we can go home now if he likes or we can do one more day of vacation. those were his options. that he needed to help us help him calm down.” He sat frustrated but eventually surrendered, gave me a kiss and held my hand down the steps. Then told me “I don’t want you, I want daddy”, i replied, “If you want daddy right now, that is okay with me.” And he walked over to his dad, held hands and got in the car easy. We went back to the hotel where he soon after fell asleep next to his daddy. It was a long day for him.

As the twins slept, I took the time to go shell hunting alone with N. It was so great to be out on the beach with the calming sound of the ocean,  now able to enjoy my oldest son in his element, exploring nature. We talked for two hours and I even let him have chocolate cake at 9 pm. Wild fun! Haha!

We hit a few rough batches today but over all, it was a good day.

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.

Not missing, just misplaced

Just wanted to share this. My son went missing in the house. Since he doesn't always respond to us calling him, it can sometimes be stressful. Since we know he can't get out without an alarm going off or growing another 4 feet to unlock security padlocks, I knew he was somewhere inside house. So really, he was misplaced more then missing. This is what happens when I lost him and here is the strange place where I found him.



Had I only started looking in the places I would least expect to find him, it would have saved me some time.
Once I did find him, he just ignored me and kept on moving on. It was just one of those silent days for him I guess. If he can fit here, I am thinking he may have a career in Cirque du Soleil.

Honestly, I think I will put a cow bell on him. At least when he is hiding I can still hear him. To bad we can't microchip our kids...yet 😜.

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!

Coping with no sleep

When you have a baby you expect some sleepless nights. After all,  you have to tend to their every need. As they get older, you sleep longer because they are kind enough to catch on to the idea that sleep is good. Some kids with Autism Spectrum Disorder (ASD) just don't sleep. I have one of them.

Little E hasn't been sleeping through the night for the past year. His first year was rough then he seemed to adjust year two. He could stay asleep but had difficulty getting to sleep initially. Now at three, he falls asleep fast; he just doesn't seem to be able to stay asleep. Getting him to sleep is the easy part now because he no longer takes naps so he is exhausted. He just can't seem to stay asleep even though we give him Melatonin. We tried a weighted blanket but he doesn't seem to like it. We do the brushing, that doesn't seem to help much either though he allows me to do it more often now.  I have given massages, scalp rubs, joint compression, impact sensory play and what ever ideas we come across. He keeps waking up. Often around the same time, 1 am and awake until about 4 am, unless he winds up not going to sleep at all. Tonight I swaddled him because I heard that sometimes doing this can help kids with A.S.D. sleep. I am hopeful that this will work like it did when he was an infant but only time will tell.

I am sure E isn't making any real decision here regarding his lack of sleep. He has absolutely zero control here. He seems so tired but still very awake. I use the word loopy to describe him. He wants to be comforted and calmed but physically can seem to be battling his mind and body. He knows when it's time to sleep. At times, he will tell me "mommy, tired."  Our kids almost always go to sleep at the same time between 6:30 -7 pm. When he wakes up at night, I often can get him back to sleep but he doesn't stay asleep, he will keep waking. Sometimes these attempts to get him to lay back down or calm down can take hours. He only likes to sleep on the floor. VERY hard on my back. We do it because we want to give him what he needs but I worry we are ruining his sleep process and creating bad habits.

The worst part of his not getting sleep is that during the day E is so hard to deal with. He's cranky, indecisive, super moody, self injurious, aggressive and often has trouble focusing by the afternoon. He becomes impossible to deal with.  His behavior is out of control and it is so hard to remain calm at times. Let's not even get into how we the parents are doing with our lack of sleep. It is clearly not an easy situation to deal with. I want to help him. I just don't have all the information to do so and that for me is frustrating.

Coping with no sleep isn't a solution, so I try to do what I do best. Research, learn, and implement. Finding answers any way we can.

Articles and links:

Sleep Problems in Autism Explained

Put Sleep Difficulties to Bed: Advice for Parents with Children with Autism

The relationship between sleep and behavior in autism spectrum disorder (ASD): a review

Just a few helpful articles that led me down the rabbit whole. Theses articles provided me with some new information to go to my sons medical providers raising new questions and seeking more answers. I share them in hopes they can do the same for anyone actually reading this.

Should you have any suggestions for us to try and implement, please share with us what you have tried and how it worked out for you.


If you like this and think it could help someone on a similar journey, please share, post, comment or forward with icons below. 

Thanks for following and have a blessed day.

With Love and dedication, anything is possible!

Vacation was a learning experience

Vacation Travels 

My husband and I use to love to travel. With our first son we continued to travel though most trips were kept within the states. Yet, since the twins birth, we as a family have not taken any trips. The past three years have been strictly focused on adjusting to life with multiples and my singleton. We decided it was time to take a vacation.

We headed to Pennsylvania to visit my friends, then to New York and New Jeresy to visit more family and friends. 

The road trip wasn't as bad as I imagined. We stopped five times so we could allow the kids some play time. Making sure the boys got in some sensory time. We went to one park near Madison University that my kids absolutely loved. It was completely made of wood and it was like a jig-saw puzzle and maze in one. Great fun.

Pennsylvania went great. My friends house is pretty big and full of stuff for kids, so my kids were entertained. E seemed to love the staircase. We all must have gone up those stairs at lest 10-15 times. I was so proud of E because despite it being a new place with sort of new faces he adjusted fairly well. He even gave out some hugs and hand holding. If you knew him a year ago,  you would know that this is a huge deal. 

Then came Jersey and seeing grandparents. He loves them and so I know he would be excited to see them. But we didn't give him much time to adjust to new space or place. We dragged him in hotel room, then dragged him back out to take him to a park. I went on the insistence of others but was weary of how he would do. He didn't like the change of car,room,car, stroller. He fought us on that but once we let him play he was happy. He was running from one end to another because it was a great deal of stimuli for him. He was happy and enjoying himself so I let him have his fun. 

The next day was when things went bad for a moment. I thought that we were going to the zoo. I planned mostly quiet and serene activities for kids.  What I wasn't prepared for was the amusement park next to the zoo. It's nothing big just a few rides for kids and a few games. But for E, it must have been a nightmare. Kids screaming, bells going off, the rides making their own specific noises and then the voices, so many. He went on one ride ok, the train. E really liked it but I think it was so exciting for him that it spun him out. We tried the carousel but he wanted no part of it. He wanted to go on a car but he couldn't decide which one he wanted and then refused to be buckled in. "I want red car." I took him to red car but the inside was yellow, "No, I want red car!" Now I was questioning his knowledge of colors. Switching from car to car, finally I got him buckled in, he freaked. I asked them to stop ride. He was wailing and kicking. Scratching at my face and glasses. Even ripped some hair out. That's when I experienced it. I started to see people as if they were talking about us, starring, pointing, perhaps even criticizing. One woman was even bold enough to say "Wow,  looks like you have wild one there. Is he always like that?" Not sure why people feel the need to comment or shame you. She was lucky I was with my kids.  Then E ripped and tore at me again as we tried to leave park. His dad then took over. I broke down in tears. This place, a place most kids would love, was obviously painful, perhaps even tortuous for E. We had to get him out of there. 

I sucked up my tears and jumped back into super mom mode. His dad tried a ride with him but that didn't go well either. I grabbed him and took him out of amusement park. Found a quiet spot and calmed him. He was wound up bad. So I let him walk a bit but he was running and tossing himself on ground. I took him and sat him in the stroller. Hydrated him but he tossed the bottle around instead. I let him. Even made it into a bit of a silly game. We started to move. Things got quieter and calmer. He was finally silent. We looked at animals and eventually he fell asleep. It was all to much for him, exhausted by his outburst he slept. Kind of like how a computer has to reboot after a system crash. 

After that,  the remainder of the trip went fairly easy. E had a few small outburst but nothing like the one he had at the Flushing Park. My new mantra "Face, Space and Place." Give my son E enough time to adjust to people even if he already knows them. Don't allow people to come at him fast, loud or touch him. And be sure to find a quiet place were ever we go. 

I recently watched this video from The National Autistic Society and I found it to be very insightful. It gives the Autistic perspective of the world around them. Whether you know or don't think you know anyone with Autism you should watch this. I watched it in a dark room with headphones and held the smart phone close to my eyes to really try to give myself the feel of the video. Try it, see if you can make it to the end comfortably. It changed the way I see everything now. Click HERE for video

NOTE OF THANKS:

I want to thank the staff at the Fantasy Forest Flushing Meadow Carousel and Amusement Park. They gave me a red band to wear that noted to staff that we had a special needs child that would require more time to adjust to rides, require a gentle approach and made them alert incase of wondering/dangers. They were super with E. Even when he was screaming and fighting,  they remained calm and supportive of us. Though it was a nightmare for E, my other two kids loved it. I appreciated the care they showed us. 

Now all I need is a vacation from my vacation. We arrived home and happy but emotionally and physically drained. It will be awhile before we go on any vacations again. 

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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