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!

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.


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With Love and dedication, anything is possible!

When the spinning gets out of control

I like to think I'm a good mom, at least I try. This week however,  I would have to say I am mediocre at best. The boys can get bored of the Sensory Diets in place so every now and then it needs tweaking. The boys have just been spinning out of control. Some days, they are literally spinning out of control, like spin tops, circling and bouncing off of walls and furniture until they fall.  I know this meant they were in need of some new sensory play but honestly, I've been so tired.  I get run down trying to keep up with it so I know I can't blame them. So what do I do for my reality check?

Most importantly, I ground myself. Just like my kids, sometimes I can feel like things are spinning out of control. Kids screaming, jumping, climbing or fighting will do that to you.  Unlike them, my spinning is only in the figurative sense. The best way I ground myself is to breathe. Allow myself to listen and feel each breath. That is honestly the best thing I can do. Once that is completed, I take a good luck at the boys and remind myself the kind of mom they need. Key word, NEED. Parenthood is a stressful job, put a child with special needs into that equation and it's doubly hard. Reminding myself that they need me helps me mentally realign.

Once I am in check, I start making the calls to the Occupational Therapists to get feedback and ideas for the kids. Now I know they haven't been getting enough sensory play but I also know they get bored of doing the same things so I am always looking or asking for new suggestions.  I could beat myself up on how I fail them by not always bringing my A game but what would be the point. They don't need a mom who wallows. They need a mom who gets it done.

Here are the latest suggestions for the boys sensory diets to help calm them down a bit and allow them to feel more grounded.Couldn't we all just be more grounded?

Proprioceptive Activities

When they receive enough sensory play, they are great listeners, attentive and super calm. Getting new suggestions benefits us all as a family.  I do whatever it takes to ensure that all three of my children grow up in a home that is loving and attentive to their needs but sometimes you just need a minute for yourself. It's a struggle and I may take a mental hiatus sometimes of what I need to do but it doesn't last. It can't, my kids need me to much.

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Spontaneous Responses

Dunkin' Donuts

This is the first week of school and I've had an early start, 5 a.m. in order to get my eldest son to school by 7:15. After dropping him off at school,  I stopped by my local Dunkin' Donuts to grab myself a quick cup of coffee.  Thank goodness for a drive thru. As we leave the drive-thru window, E says "bye-bye. ha a nice day" I looked over to him, his hand still waving and said "Hey E...stop blowing my mind!" He just smiled his perfect smile.

Now this may not seem like much to most folks. Cute perhaps to the average parent but for a mom with a child with autism who was completely nonverbal with little social emotional connection a year ago, this is ground breaking. He mostly echo's everything we say but has been gaining strides in speech. Today all I said was thank you at the drive thru. In my defense, I was a bit grumpy do to a cold. In any case, when he said what normally would be my response to the very lovely staff at my local D&D, I was over-joyed. It's not just that he said it and said it fairly clear,  I might add. But that he understood it was a moment that called for him to say that. I would have jumped in the back seat and kissed him if I wasn't already driving. Remember, I was going through the drive thru.

Well, I don't need to tell you that he turned my morning around and the rest of my day as well. I was so proud of E for showing me and the happy caffeine pushers that my boy can talk. It was awesome! He is showing signs that not only will he be able to speak more regularly but that he is understanding some of the social aspects or expectations of speaking. Pretty cool!

Here are some suggestions from another writer and Licensed Speech-Language Pathologist with ideas on how to encourage spontaneous speech with your child.

Top Five Ways to Encourage Spontaneous Language


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With Love and dedication, anything is possible!

First Day of Kindergarten

The first day of school! Ahhh! I was a nervous wreck.  The handmade sign was complete, the book bag was packed and lunch bag ready with a special little note from mama and a favorite treat. The note would be cute if he knew how to read it. I did it anyway, confident he would be able to sound it out and figure out the "I love you" note. I was ready but there was this lingering feeling of worry. 

The night before N started talking about school and how he was scared of the other kids making fun of him or not liking him. "Why do you think you are different?" I asked him. He responded. "Because I'm different. I'm not like other kids. "It had never occurred to me that he would be so self aware or self conscious enough to feel this way only at the age of 5. My response "N there is nothing wrong with different. Different is what makes us all so very special and if we were all the same the world would be a very boring place. You just remember to be a kind person and respect others. Just be you and the kids that are right for you will be your friend. You'll see." I mean what was I supposed to say to him? I was nervous more then ever now. Not just for the first day but for the entire school year.

Nickelodeon Giphy

So as a sign of solidarity,  the entire family gets in the car to take my sweet little baby boy to school. Dad, brother and sister wish him luck and I go in with him. As we go in I ask him if he is okay and he tells me "It's okay mama, I'm not nervous or scared anymore. I'm excited to go to kindergarten." I mean come on, where did my baby go? In an instant my sweet little baby boy was officially a big boy and brave as heck. There was no need to hand hold or coddle him, he had this and he wanted me to know it. Message received. 

After I dropped him off in class, I took a quick glance back to take a picture and walked as fast as I could to the car. Past the Vice Principal who wanted to chat with only a "Can't talk, I'm trying not to cry in front of everyone." She kindly said "Don't worry mom you got this. He's got this! We will take good care of him."  I shouted a quick "thanks" and cried when I arrived in the car. My first born, my baby was growing up so fast and I had to let him go. I pushed him right out of the nest and he took flight. I'm proud of him. We all are. 

Love you Nono.

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Music really is good for the soul

Anyone that knows my son, knows that he is obsessed with the movie Wall-e. It's not only the movie he loves but the music from the film. E currently loves this song by Louis Armstrong "La Vie en Rose". I mean loves it! I have had to download the lyrics to learn and memorize this song for him. It's funny to me because they only use a short clip of the song in the movie but he loves it.

E likes for me to sing to him at night as he falls asleep and we have tossed Old McDonald out and moved in a more soulful song.  I am pretty sure he has an old soul inside of him. Either way, I like the change and that he is showing us his likes as well.

Here is a video clip of Louis Armstrong singing La Vie En Rose in 1959.

Here is the Wall-e movie clip where they use the La Vie En Rose by Louis Armstrong.

If you have never seen this movie check it out. It really is a great movie and for kids that don't speak or speak much, they really seem to enjoy it. Helps build thoughtful imagination.

Here are the lyrics to La Vie En Rose by Louis Armstrong if you are not familiar.

Hold me close and hold me fast
The magic spell you cast
This is la vie en rose
When you kiss me heaven sighs
And tho I close my eyes
I see la vie en rose. 

When you press me to your heart
I'm in a world apart
A world where roses bloom
And when you speak, angels sing from above
Everyday words seem to turn into love songs
Give your heart and soul to me
And life will always be la vie en rose.

You see, he is a soulful little boy. Music is actually very therapeutic for him and helps him calm down almost always. I hope you check the movie and music out,  at least for your kids. 

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Happy Birthday

Day 2 at hospital

First day home together

First photo shoot

Three years ago today, I gave birth to two very beautiful but early babies. They were born 5 weeks early and weighed in 4.4 lbs and 5. 4 lbs. They were so small, I can still recall how scared I was to bring them home, especially my boy. Seeing them in NICU with all those wires and feeding tubes, I prayed I would be able to bring them home sooner then later. When I was able to bring them home within the week, I was elated. Eight months of doing my best to keep them in but they were finally here and leaving healthy. Prayers answered.

Since that day, we have watched them as they have discovered the world around them, developing what I hope is a life long friendship with their older brother and building a twin bond that is as strong as both their personalities. They fight as much as they do hug and kiss one another. 

Now they are three years old and each showing their own very distinct personalities. There isn't a day that goes by where I don't laugh with the kids. We absolutely love them and though they were a surprise, with many sleepless nights, we also know they are a blessing.  I would change nothing. 

Happy Birthday my babies!  

Mama, Daddy and Nono love you both so much. Thanks for bringing double the love into our lives and filling our hearts exponentially. 

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. 

Praying for a Miracle

Yesterday, I found myself yelling at my kids. Everyone was screaming and carrying on. It was like most days in my house, one kid fighting with the other over something or another. When a calm came over me. I remembered how lucky I am to have three beautifully healthy children. I remembered sweet little Kaylin.

Now I don't know Kaylin and her family personally but I know of them through my sister and niece who are close with the family. Kaylin is a 5 year old fighting cancer. She was doing fairly well until recently when Pneumonia got a hold of her. She is now in critical condition fighting for her life.
Through out it all, she has seemed to take the fight of cancer in stride. A strong and determined little girl. Now another battle lays before her as her family sits by her side awaiting a miracle.

Kaylin's fight reminded me to hug my kids and not stress out so much about how they fight or terrorize the house. I am not going to let them destroy it or anything but I did stop yelling and tried a  more peaceful calm approach to handling the situation.

No longer will I say "I need a vacation from my kids." I mean, I will try to keep myself in check. They are precious and the time we have with them should be spent that way.

To Kaylin and her family,
We are praying for you to get better. For you to have relief from these battles you were handed. That God shows his grace as so many pray for a miracle. May God give your parents the strength to continue to be strong as they sit by your side. You are a loved little girl by so many.

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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Bells and Alarms

Paired sleeping for comfort

Bedtime in our house is a familiar routine to any other household with kids. You know, that mad frenzy to get the kids fed, washed and clothed for bed. You pray you can get it all done before 9 pm so you can tend to some house chores and maybe get a chance to shower before you crash into bed. It was a night just like so many others of wrestling to get kids down when I found myself thinking back on simpler times that I recalled something about E.

When E was just an infant, he always seemed to prefer to be swaddled for bed. He slept best that way. He seemed to love to be held close or snuggle with his twin sister in the crib. If you put him down alone and unswaddled, he would cry. We thought it was because he was colic. But as he approached the 1 year marker, he liked me to keep my hand on his back while he fell asleep in his crib. Many nights I stood at his crib side, my hand on his back. If I removed my hand he would cry or wake. So back my hand went on his back. I became a pro at alternating hands with out him feeling my switching of hands. It was exhausting. And God forbid his sister would wake, then I just had a cry fest on my hands.

Many times I thought of filling a dish glove with rice to lay on top of him to try and give myself a break. My concern was that some how that could hurt him, so I never did try it. Little did I know that weighted blankets would be in our near future.

Nightly headstands

After the year marker, he liked me to hold his hand or rub his feet. Eventually, he just wanted me in the room with him. He would stand on his head or ram his body against crib. So every night, I lay on the floor with the twins as they fall asleep.  Stopping E from potentially hurting himself. Some nights are more of a struggle then others but it is improving. No more body ramming or headstands since we give him plenty of sensory before bed. Melatonin helps him settle down a lot quicker, as well as a drop of essential oil on his pillow and woobi (security blanket) to help him focus on his breathing.

In any case, I thought back on this time and realized that he was seeking sensory stimulation even way back then. I also made the comparison in my mind in regards to my eldest son. Another sensory seeker from early on as well all though we are just now learning that this is what he too has. E, still loves a good tight hug so long as it's on his terms, loves joint compression, a good pillow squash and is slowly starting to enjoy the brushing. Both my boys do.

Bells and alarms.

I wonder why I didn't put it all together sooner. Was it lack of experience as a mom or denial? Perhaps both. My first son, N, met all his markers on time if not earlier then most kids. And E, my second, did not, so it was easier to notice some potential problems for him. So how did I miss N's sensory issues. Early on I though maybe there was something going on so I had the school evaluate him for potential behavioral problems at two but they thought he was just high energy. But there were signs, the late speech development, the covering of ears, the constant jumping and moving, the slamming his body into yours for hugs, the unexplained outbursts/fits, jumping from high heights, banging his toys down hard. Honestly, his hugs feel like a Mack truck is trying to run you down to the ground. Kisses that squash your face. Anxiety. I mean I should have known something earlier but I just figured because he is so bright that he was quirky. I LOVE quirky. And the professionals were telling me he was okay. My boys are healthy and happy, it's all a mom ever really wants to hear. But I kept pushing for answers.

So now at 5, N has been formally diagnosed with Sensory Processing Disorder and is now receiving Sensory Integration Therapy through Occupational Therapy. An answer and a solution.

Having these diagnosis' for my kids doesn't make life any less challenging but it gives us a great deal of explanation and motivation to get them the help they need to be successful in life. Do I still long for simpler times? Sometimes. But truthfully, they were never REALLY simple. Nothing ever is.

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Signs that Early Intervention is Working

Nearly a year ago my son lost all speech. He never said mama,  stopped saying daddy and rarely babbled. It's the reason we had him evaluated and sought out help for him even when others were saying "he's just a bit behind." Even our pediatrician didn't think anything was wrong but my gut new better. 

I would have given anything to be wrong but taking the time to prove it to myself turned out to be a good thing. I trusted my instinct, I wasn't wrong and though that was disappointing, we got him the early intervention and today something awesome happened. 

E's ABA therapist was over working with him on requests. 

ABA: Would you like a show E?

(He often gives signs or brief 1 or 2 word answers.)

E: No, I wan Wall-e and Eba. (No, I want Wall-e and Eva.)

I heard it clear as day. Had I not been in the room,  I wouldn't of believed it and more importantly, I wouldn't have heard it. I cried. My son had spoken his first true sentence and it was a spontaneous response. It was so awesome. 

Then E topped that. He knew what he had accomplished, I seen it in his face. I was so overwhelmed with emotion I had to walk away briefly. When I came back into his sight, he walked up to me and said "mama" and dipped his head. A sign that he wants affection. I kissed him and he raised his head and arms, now he was asking for a hug. As if he knew I needed it more then he wanted it. Either way, I happily obliged. It was a great moment. 

He went back down and back to his ABA to watch  Wall-e. We were beaming with pride. I still am.

He has since reverted back to his normal two to three word phrases but I know it's in there. His mind just needs more time to learn how to get it all out more consistently. 

All I can say is trust your instinct, fight for your kids, be their advocate and get them the help you think they need. In E's case, Early Intervention, Speech and ABA helped him get to this moment. I am thankful for his team every day. 

Just a note of thanks:

Mrs.Sallie you've helped me as a mother, a friend and family advocate. My son may not have received this help early on if it were not for you telling me to trust my thoughts. "A mother knows..." Thank you for supporting me and centering me as a mom. I know you will say it is your job to help but I know you go far beyond that. You are truly an angel on earth.❤️

Ms. Jill, I can't say enough about all you do to help and encourage E to speak. You are so great with him. You have become a very special part of our family and we are so grateful to have you as E's Speech Pathologist. We know E loves you just as much as we do. You helped make this happen. You Rock! 

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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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