My prayer for you my boy

Sweet son,
I pray that you will always know you are beautiful and created to be just who you were meant to be. I pray that you will believe in yourself and be anything and anyone you choose to be. I pray you will know you are loved, no matter what anyone says about you or calls you or thinks of you because you are bigger than that. I pray you believe you have so much to offer this world. You are His little light and you shine into the lives of so many others. I pray that no one tries to take that light from you. I pray for protection, from words, from judgements, from fear that will keep you from being the wild and adventurous boy that you are. I pray that you will accomplish your dreams, never give up on your goals and have the support to see all you were meant to see. I pray you will always see the great in others regardless or race or religion or political view. I pray that no one will try to fit you in the mold they call "normal" because you wouldn't be you in any other way. I pray you will find love and the depths of happiness that money can't buy and I pray you will always trust Jesus to guide your way. I love you my sweet beautiful boy...and you will always be my baby boy.

How to Survive a Tantrum

When our kids get into a space of either being overstimulated or having difficulty dealing with their emotions it becomes difficult for them to calm down. Having a sensory space does help with the tantrums when things are going difficult at home but when we are out it's not that easy. I have found myself many times in a store or out doing my errands when my son is all of the sudden things become unmanageable. There are some ways to avoid this. It's not fool proof, but it can help. Before you even go anywhere, have a schedule, visual is even better. I've had my son even hold it on our errands. This really helps because they need to know what to expect in their environment his or her environment and to be able to process the possible sensory inputs that they may be experiencing. For example, every time we went to the grocery store my son would become very upset near the seafood section because of the strong smell of fish. So we would either make it that the last stop before we left the store or my husband and I would go to separate sections of the store so we get could the seafood without bothering him and setting of a meltdown. 

As a parent you also need to remember that your child may react differently if they are hungry or thirsty, had too much sugar, or have not had enough protein in that day. This way, we can gauge whether it's worth it to go out and do an errand, or take care of those needs before we go. Sometimes we don't have a choice, so having snacks on hand or even a fidget toy purse could possibly help them just to be able to calm down in any new environment or in a very busy environment like a grocery store. Sometimes there are just circumstances that we can't avoid and all of a sudden our child is either on the ground as a five-year-old or six-year-old or (insert your child's age here) and they are very upset at something that is not going their way and who knows where it came from. When this happened I need to check my surroundings. Is everyone around my child safe? Is he safe? Then I have to ask myself, do I stay after this is done or do we leave? Either way as sensory parents and as parents of children with autism when we go out, we need to ask ourselves what will the outcome be if a child has a tantrum. Are we going to sit and wait and let them have their tantrum? What is going to be the outcome? If we have it in our minds before hand no matter what happens then it will help us have a plan when it does occur.

 I have found that sometimes they really do need to get these tantrums out of their system in order to feel more comfortable in their body again and sometimes it's their only outlet. It's not fun for us as parents but sometimes the child just needs to get it out. If you are noticing aggressive behaviors with your child then chances are things are building up but they are not being addressed with your child. There are a number of factors as to why this is happening. It could be a chemical imbalance, it could have to do with diet, it could just be sensory overload or a need of sensory input. I used to have an agreement with my son that if he had a tantrum in the store that we would sit in an area of the store and wait until he calm down then we would talk through his feelings (of course after he was calm) and then we would continue to do groceries shopping. But I needed to have a plan ahead of time and even schedule in that possible tantrum time to make sure that when I went to the store I had ample for whatever we faced. That may not be your approach, but  having a plan helps you and it helps your child. 

One time we were in a bowling alley and he had thought that because I had said maybe we would be able to get a treat from the candy machines that it would happen, no questions asked. (Never say maybe to a child with autism, it's not literal enough). So when we finished bowling and we started to leave and he realized that he wasn't getting a candy from the candy machine he started to have a meltdown. This was probably one of the first extreme emotional meltdowns that my son had in public. And something in me just told me to wait and let him get it out. So I stood my ground, and said we weren't getting candy, and I zoned out every single person around me. I didn't care who was watching because I knew that my son needed to have this outlet so I waited until he was completely calm and before I could even say anything, my son looked at me and said "Thank you mommy". This was a pivotal point for me because I realize that my choice to let my son have a tantrum was so important for him. He had so much building up inside him. It may not seem like a tantrum is a good thing, but it might be a necessary thing for your child.

When other children are involved in the situation of a meltdown or a tantrum we may need to intervene. In the case of a volatile situation where a child becomes aggressive, you may need to remove the other children and even yourself. As long as your child is safe and simply saying this is not OK and walking away may be your only choice because chances are your child is becoming aggressive because they are in fight or flight mode. 

Fight or flight means that the executive function is no longer functioning. The executive function is the frontal part of the brain that helps a person with a reasoning ability. When the amygdala (The area that responds to fight or flight) is activated then it overrides the frontal cortex (the area that tells us to make a good decision). When the amygdala takes over your child is no longer processing what you say to them so the behavior will probably not change. The best decision is to walk away, and take others with you so that everyone around them is safe. This is a scary place to be. No parent wants to have to protect their child from their other child or children in their home but sometimes its our only choice. As equally important when that child does calm down and you need to talk to them about the make sure that the other child isn't in the room until you come up with a solution to rectify the situation. Helping them to problem solve about what they might be able to do differently will help in future decisions. I will spend time in a future blog discussing ABA, but this service really helped our child.

Surviving a tantrum isn't easy and it's exhausting. Make sure to give yourself that self-care afterwards. It's really important. If you can remain calm during a tantrum that will help things, and your child will work towards regulating just by watching how you respond. You might need to give yourself the space from your child afterwards, ask a friend or your partner to help with watching your child to give yourself some free time to be able to decompress yourself. We suffer the trauma too, and if we don't take care of ourselves we can't meet the needs of our family. Whether it's bubble bath, a glass of wine, or a chat with a friend, take time to recover, we need to survive! 

Please don't glare

The year my son turned 5 was a really hard year for us. He was in Kindergarten, and had to follow the rules of school. Sit in a seat, don't blurt out, mind your manners, color in the lines (okay, maybe that is just some teachers). My son was not viewed very kindly. He was a disruption to his peers, he would wander around the grounds. Do exactly what he was NOT asked to do (such as whack the fish tank when he was told not to, because it might hurt the fish-yes, one died, and then he learned to never do that again). It was hard lesson after hard lesson. We were told by a staff member that he is just making bad choices, but honestly the way they said it, I just heard, "You're son is bad". The looks of disappointment cut to my core. I was told at a behavioral concern meeting that maybe I needed to manage his behavior better, or maybe it was something we weren't doing a home. Did they know that the lessons I tried to teach him was taught a thousand times? No! It felt pretty hopeless, and my husband and I were considering ourselves pretty bad parents. But, one woman observed him (she was a specialist in the district for Early learning intervention) and she noticed he had difficulty understanding cause and effect. Yes! That's what I have been trying to tell everyone!! It was starting to become clear.

Around the same time things were looking hopeless at school, I was talking with his occupational therapist about Asperger's (now called High Functioning Autism). I had been noticing in my readings some of the similarities between the Autism Spectrum and my son. They have delayed language skill, my son didn't learn to talk until he was 2. They have one interest fixations; my son has loved dinosaurs since as long as I can  remember-now he wants to be an archaeologist and dig up dinosaur bones. He always lined up his toys and organized them (sometimes according to color), this is another indicator. If he learns a new game, it's ALL he will think about, and talk about and eating or all other functions become secondary, and it's a one sided conversation (common for those with autism), He can use advanced vocabulary in context without entirely knowing it's meaning (High functioning autistic children are very complex detailed thinkers). He doesn't like to look anyone in the eye he doesn't know well, and he prefers not too, but it doesn't mean he is listening. He does a happy wiggle every time he's excited about something and dances with his hands. He is scenario based, and one skill in a new environment will not transfer unless he has been in this environment several times and knows the expectation (for example not jumping on the furniture, he would climb and jump on any new person's house even though at home he is not allowed-well, climbing, but not jumping). He also has no volume control (this is getting better-and could be because his dad is from the New York area). There are no gray areas for him, so if you say 'maybe' it means yes, even if it's not an immediate yes. He takes things literally (he is starting to understand when people are teasing or over exaggerating but only if he knows you well). These all fall under the autism spectrum, and I started to add them up and realized maybe we weren't addressing the whole need.

We decided to have him evaluated by the Seattle Children's Autism center and for the first time in my life I felt like someone heard me. It took a year wait list (again) to get in, and another 4 months to have a full diagnosis. They screen for ADHD, and other possibilities before concluding it was autism. They were very thorough and helpful, and really took the time to know the whole story. But, it was very draining, and it took some time. It was confirmed, my suspicions were right. My son has autism.

Shortly before his diagnosis I had already decided and I knew in my heart that he did in fact have autism. I was trying to process things, and trying to avoid people that looked at my son differently, turn away from those who shot horrid glances in my direction in stores when I would say no to him and he would tantrum, One time, I will never forget when my anger just couldn't stay locked inside. It was summer time and the bees were in full motion, which my son was deathly afraid of and would run away from at all costs, even his life. We were in a grocery parking lot, and he thought he saw a bee and ran into the street in front of a vehicle. The woman in the truck thankfully slammed on the breaks, but then yelled at me, "Watch your son!" I screamed in all desperation, "HE HAS AUTISM!!" I grabbed my son's arm and went to the car and just sobbed. It took some time to compose myself and I told my son I was sorry for yelling and that he needs to stay by me, I assured him I would take care of the bees or any bug that bothers him. All of the sudden I had a knock on my window. The same woman stood there with full remorse on her face with a bouquet of flowers. "I'm so sorry, it must be really hard for you" she said as she handed me flowers. All I could this, is "Yes" because so many people don't understand, they just look at me and judge me and my son, and he is trying. He is a sweet boy, and somethings are out of his control.

So, before you judge a screaming child or the parent who is accompanying one, just remember, you might not know their story. To those moms, I always say, "I understand, and you are doing great." To the woman who gave me flowers, "Thank you for understanding, and I forgive you".

Making a Sensory Space

One idea I found helpful was to have a space in our house for our son to go and be quiet and calm down. I found great ideas from other parents, from Pinterest and from my son's OT. There are a few things to remember when putting one together.

1. It needs to be there space. It's like a "room" that is their own, so asking permission to go into their space is a must from you and siblings

2. It needs to be filled with things they love. We had an eye-spy bottle,velvet blanket tacked up on the walls (he loved the feel of it), his bean bag chair, his puzzle ball, along with other sensory items he loved (like his "stuffies") (Check out the facebook page B-inspired Momma for some great ideas for sensory crafts and possible things to put in your child's sensory room)https://www.facebook.com/B.InspiredMama/?fref=ts

3. It should be a closed off space with less light. Sometimes even light can be over-stimulating for our little guys (and gals). You don't need it behind a door, even a curtain will do. We decided to use our son's closet space (clothes removed), we used a shower curtain rod with a cloth curtain he could leave open or close.

4. No one else can use the space (unless allowed by your child who "owns" it. This is important, because it needs to be available for your child when they need a time out...but don't use it as a time out! Haha! Otherwise it will defeat it's purpose.

5. Create the space with your child. This place is their space, so get their input, ask them what they want to put in their "room". They are so creative and will think of lots of fun things you might not have thought of.

Having a space for them when they are in flight or fight will help them to calm down enough for reason. I will discuss how to handle fight or flight in a future blog, I am still learning how to handle it myself. The larger the child, the greater the sensory need, and my son is now 9! They grow up fast!

For more ideas on what to put in your sensory room check out my blog post Sensory Tools.

Sibling Care-don't forget they have needs too

My oldest son has always loved his little brother (the one with SPD), he would cry when he cried and bring him toys to his swing (which he loved, no surprise there) and sing to him as he rubbed his head. As they got older though and the screaming and constantly needing to be held started to make my oldest felt left out. My youngest not only has sensory needs, he also has autism (high-functioning-also known as Aspergers-I will discuss it in a future blog). The struggle with relationships for my youngest began against his brother. You take my toy, I scream, you move my line of blocks, I scream, you play the game differently than before, I scream. My oldest would run away and cry and hold his ears (they are only 21 months apart). My oldest learned early on that he played a role in helping our youngest navigate life. We didn't put him in this role, he just came to it as the closest person other than us to our youngest. He still struggles with the hard days, the meltdowns and the rigid fixations (another indicator of autism) and of course these things occur more frequently when his sensory needs aren't being met (or something went wrong in his diet-I will talk more about this another time). 

We learned early on that our oldest needs breaks, time away, time to process and time to remind himself why he loves his brother so much. I think all siblings could use healthy time away from each other, but even more so in the case of a sibling with a disability. They can easily become mini-parents and my husband and I have worked to help him not feel that responsibility on his shoulders. 

We have recently started sending our oldest son to a sibling support group. They also have a parent to parent group which is great! We need to be able to talk about these things with others who get it too. The sibling groups mostly get together and just have fun; they also talk through how things are going and the struggles they face due to their siblings behaviors. If there isn't a group like this in your area and you can't find local support, there is almost a group for every disability out there. We enjoy a sensational parents group, and Asperger experts (they have amazing tools in how to navigate Aspergers as a Neurotypical-someone without autism). 

Most importantly listen to your child (the sibling) and watch for signs of distress. Have special time with them so they know their needs are important too. All children have needs and their voice needs to be heard too. 

A word of advice from our son's older sibling (11yrs.)

“My brother is really creative, and he has a lot of ideas. He is good with clay, we had a Claymation set we got for Christmas, so we made clay for our Claymation. We had 5 packs of clay with different colors. One packet was Dinosaurs that tell you how to make the characters, and we didn’t listen to that, we just made up our own characters. It was really fun and we made a bunch of videos about camping, friendship and people coming to our house and we made a table with dinner and one guy ate all his food and his plate too. We also play Lego, and we pretend we make our own Youtube, we call it braintube. We create characters and make up names for our channels. It’s all made up and I am the "popularist" one.

Here’s what I dislike about my brother. He’s really crazy, and by crazy I mean crazy. Also, he pushes me to play games that I don’t want to play, and if I don’t sometimes he hurts me. I hate bedtime. I get all ready for bed, and then he turns on the light and it goes back and forth. I tell him to go to bed, but he keeps getting up and MAN it’s so annoying and dumb and I really don’t like it. It’s non-stop. We play this game at bed time called school and we pretend that I am him at his school and sometimes I react differently than I might with the teachers and his friends. He plays the other people like his teacher or his friends. That’s actually not a dislike, I like that. But, sometimes when I’m really tired he begs and begs me to play it. So, I tell him to stop asking, but then he won’t stop, so then he turns on the light. Sometimes when I am sleeping he gets up on my bed and he won’t get off, and then I call for mom and he blames me! Also, he goes to the bathroom, then goes to mom and when he comes back and turns on the light, and it hurts and burns my eyes. That’s all I have to say.

My advice to you is be nice to them, don’t tick them off. Try not to be angry at them, because they will get angry at you. Sometimes my brother punches me. So, I guess I could say I like him so-so, and we do have fun.”

As you can see, it can be hard. My boys haven't always gotten along, and it breaks my heart. But, the truth of it is my oldest has had to get the brunt of the younger's fury. I still see that they love each other, it's just a balancing act of letting them play and work things out and knowing when to step in. I take the time to hear out my oldest and let him be angry and have a place to vent. We try to let this happen privately because it's hard for our youngest to hear (especially very angry words) but either way we give him a chance to express it, in any way he needs to. It's one way to achieve balance in our family. We can't forget that our other children have special needs too. 

This is an excellent resource and their newsletter is full of great information! They work with families of all disabilities. 

http://arcwhatcom.org/

My beautiful climbing boy

Part of this journey has been accepting who my son is, with all the ways he experiences life, accepting his abundant energy, and embracing his love for climbing and enjoying life! I was talking to a friend today (you know who you are…take things easy!) and we were discussing how much we don’t really like the word “disorder”. Honestly, to us who don’t have sensory needs (while all of us do have sensory preferences) maybe it might seem like that because their body doesn’t react to things in a way we think of as “normal” (by the way, I really dislike this word, I grew up hearing that “normal” is just the setting on a dryer). We can’t all be the same, and I would like to venture some of the greatest astronauts have SPD, as do many that involve tolerating great body pressure (such as pilots). My son is beautifully and wonderfully made EXACTLY as intended. That being said, after the diagnosis I needed to step back, take a deep breath looking at their “findings” and have a good cry. Don’t forget to grieve that there is something that wasn’t expected about your child, and life can sometimes be difficult for them to filter. It’s important to make sure we don’t  just brush it off like it doesn’t matter, because in their world it matters a great deal.

But, I started feeling like I needed to control his environment, teach him all he needed to know and harness him to be like others…before you judge, I know now that was NOT what my approach should have been. You are going to find if you have a child that senses the world differently that the rules of your home are going to have to be a little different. My son crawls on the back of the couch (like our cat) because it makes him feel good, and the balance helps his body, I kept telling him just to sit down and calm himself. He used to constantly climb the wall frame (yes, literally) that joins our living room and kitchen, and I told him to get down, it was too dangerous!  He hung on our arms and asked to be swung like a monkey, and I said I was too tired, go watch a movie.  I wanted to reign him in, “tame him” so to speak. I was exhausted, and I wasn’t happy, or even close to enjoying my son. I would in desperation put him in front of a screen (this causes overstimulating especially for kids sensitive to stimulus and in turn made him more hyper) instead of taking him to a park, or even grab his arms and swing him around because I was not accepting it, I was controlling it. It can be hard, especially if you are not super active like your child (like me). But, you need to give them the opportunities to meet the need without the struggle. 

I reached a point of utter desperation when I saw myself (in my mind’s eye) holding dozens of wild horses, trying to pull them in, trying to make these animals tame. All the while my hands were clenched, my sweat and tears were all for not. These animals were meant to be wild, and I was holding them back. I was holding my son back. 

I finally let go, but I did it with peace, I knew it was the right thing to do. The amazing thing is that I saw the most beautiful sight in front of me. My beautiful son, the wild stallion, finally free to be what he was created to be. 



Does my child have SPD? How do I know?

What does a child having a sensory need look like anyways? Is my child just have high energy or could there be something more going on? My child was diagnoses with ADHD but the medication and therapy isn't helping.

I realized I needed to back up a little bit and just talk about what might sensory processing disorder look like on your child. Be aware, I do not have an occupational therapy degree, I am not a doctor. But, I have read a lot, been to workshops, talked with other parents of children with sensory needs and asked a lot of questions. Often times sensory needs accompany another disability or diagnosis that overlaps. I have heard it been said that all children with autism have sensory processing disorder but not all children with sensory processing disorder have autism. I have also heard it said that many foster children and adoptive children have some form of sensory need. Sometimes children with dyspraxia exhibit sensory needs or aversions. So, keep in mind this might only be part of your child's need and continuing to explore more possibilities is important in understanding the whole picture. Here are some indicators that show certain behaviors or types of characteristics that might lead to suspecting a child has sensory processing disorder. (This is not a complete list, just from my experience and others who have a child with sensory processing disorder (SPD).

1. My child has aversions to certain types of clothing, shirt tags bother them or certain clothing that feels fine when you try it on in the store might be something they reject because it doesn't feel good on their body after they get it home. 
2. My child never likes to wear shoes or socks indoor or outdoor no matter whether it's raining or muddy or snowing. Or my child hates the feel of grass under their toes does not like light pressure on their feet especially things like tickling. (my son adds because it itches)
3. My child really enjoys being muddy or getting their hands in the dirt or touching things that are sticky or the opposite, they do not like having any wet clothing or having anything sticky or dirty on their hands and they always feel like they need to clean their hands or their body. 
4. My child never tires, always likes to climb on things, doesn't like to get out of the pool doesn't like to leave a sensory rich environment such as a trampoline or a gymnastic environment. (Climbing or extreme energy in any given environment without picking up the cues of the social norms around them (this can also be an indicator of autism). 
5. My child seems hyper active and not able to calm down when necessary and finds it difficult to sit in one place for any length of time (often times children with sensory processing disorder are misdiagnosed as having ADHD)
6. Some children with sensory processing disorder have difficulty sleeping or staying asleep throughout the night
7. Your child may have difficulty knowing how to dress for hot temperatures or cold temperatures and might wear a long sleeved shirt in the summer and shorts in the fall and winter. 
8. Your child may enjoy crunchy foods, salty foods and foods that are spicy. (This really depends on their sensory needs)
9. Your child may enjoy a variety of tactile (to the touch) activities. They may enjoy clay and use large amounts of Vaseline rubbing it on their hands and body or playing with toothpaste or other things that are creamy. They might enjoy rubbing it on their hands, hair or body. (My friend's son has processing disorder and he once got into a bottle of Vaseline and rubbed it on his entire body and when asked about it said that he just wanted to look at it). 
10. Your child may enjoy carrying heavy things, pushing heavy objects moving things around like books and furniture. 
11. Your child may more easily become sick because they are using their energy far beyond exhaustion and don't know when to rest. (even when they are sick they have a hard time resting and still desire sensory input
12. My child has aversions and sensitivities to certain smells, tastes, textures, and sounds.
13. My child loves to exercise and be outdoors!! (this is a bonus if you are wanting to be more active, most of our sensory loving kids will get us to go outside and enjoy nature and you will come back with a happier child!).

These are just a few things from my experience I wanted to share with you. Please leave me questions in the comments, I would love to tell you more and answer what I can.

***I apologize if you read the post without my editing, oops!!***

Sensory Quiz: (an online resource)

http://www.additudemag.com/quiz/19/question-1.html

I think my child has SPD, now what?

http://www.sensory-processing-disorder.com/step-by-step-guide-for-spd-parents.html