Tag: autism

Giant nursery crib? Til..this?

Published on by ☆ Emma Santorini ☆Leave a comment

Oh, I have forgotten to show you guys! Proud mama bear moment!

If you guys remember this post  [here] my son now officially a big boy!

Earlier he had a bed that we’ve been renting from the hospital (in the post), and my best friend/godmother to E said it looked like a giant crib (those beds for babies), and I never thought of that before, but after she said that, I couldn’t unsee it.

The bed that we have had since he was .. three years old I think. We rented it due to E being an run awayer in the middle of the night. One time I found him (this was before this bed) at the front door in my apartment complex.. in the middle of the night. Yes I had locked the door.

I spoke with the CPS about the bed (due to safety reasons, etc.) together with the hospital, and I got approved. Sure, I didn’t need to talk to them, but due to me having a child with special needs… People don’t understand how it is, so yeah. I have been involved with them ever since so I figured out it would be better to have a true, straight communication with them.  Anyway, they said yes, so we ordered it. After having gotten the bed, E felt so safe. He had his own place. I made it into a fort sometimes so he could have his own little “house” to be in, and he loved it.

Note this this bed also had a beamer you could have over the closed doors (kinda lock him in) and that was approved as well. Yes I am  keeping my blog raw and authentic so the truth is being told .

Fast forward to now … He wasn’t home, and the bed was waiting to get picked up! So I unscrewed the whole entire bed and had M help me carry it down to the basement.  It stood in the basement until the guys from the hospital-special-team-helping-thing came and picked it up. The past weekend (12th & 13th of December) we worked hard to get every piece together.

This Wednesday (17th) E came home and he has been sleeping in it every night. I am so proud of him.

The boy who was super happy and excited. Jumped right into bed after seeing it and was ready to go to sleep. Giving goodnight kisses and saying goodnight.. at 5pm.. That’s how excited he got.

So cute but yeah. He is now a big boy and a big boy need a big boy bed.

The green alien is from Ikea and the gnome / Santa is from Jysk – an scandinavian home/sleeping department store or what to call it.

I do not know why all the text is in the caption of the media/pictures. I tried to fix it, but it doesn’t work, so I’m going to leave it like it is.

Stress, Coffee and Performance

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Today is a coffee day! Stress, chaos, brain disconnected and a proud moment.

Goodmorning my

beautiful souls 🩷

As you have read above, today / this morning havent been a good morning except watching my son preform in school (a tradition) now when it was Lucia last Saturday (13th December). He did so good! I had to cover my face though so I had like a burka (sorry! No disrespect!) so only my eyes was showing so I could watch him.

If he would have seen me, he would have run to me instead of being with the kids on the “stage” preforming. He did so good. Unfortunately we weren’t allowed to take pictures during the performance so this picture below is taken before it started.

Advent 🕯

When the performance was at the end, they put music on loud so everyone including the audience (the parents) could join and dance with everyone and that’s when it became too much for E. He started to cover his ears, cry and have a meltdown so I removed my jacket from my face so he saw me and I went over to him. He cried so much. I was praising E so much, telling him that he was so good and how proud me and his dad is.

We left instead of joining them for fika (a must in Sweden – cookies and beverages)  so E wouldn’t get all worked up and refusing to stay in school. So a few hugs and kisses and the teacher walked away with him.

Now to the chaos part

I AM SO CLUMPSY! To enter the school we need a passing card and I remembered i forgot mine at home in all stress that happened this morning to go in time so we wouldn’t miss E’s performance.

So M dropped me off at the bus, I went home again to get it, repacked my bag for school, and quickly changed outfits. I don’t want to go to school with a dress and toooooo much showing. I noticed that when I came home! Ohmygod! Fortunately I had covered my body so it wasn’t showing for anyone.

Now it’s a coffee morning!

Due to all the stress, chaos etc I felt it was time for ice coffee and luckily I have many in cans so I dumped two cans in my mug. I havent had these for a long time so I was hesitant first but after first sip it was like angels sang in my ears.

Coffee makes me tired so I can calm down a bit. ADHD and caffeine is a good combo if you wanna get tired and calm down.

Now I am on my way to school- I will be approximately 2h and 20minutes late. But hey, i notified my teacher last night that I will be late and I messaged her explaining what was going on so she told me to take it easy and no stress. That felt so good. But unfortunately I have missed a lot but what to do? Today it was about my son and unfortunately this happened.

I will blog later today—first school thought. Home and study, but I will fix it. I have wanted to blog so many times, but due to me being so tired and barely having anything happen, I didn’t, but now I’m going to get back again to the blogging. I will also answer your comments! I see you 🩷

Currently playing in my ears; Cher – Stronger

I mean, how fitting isn’t that? I have became obsessed with one song with Cher!

It is sooooo good!! I listen to it on repeat!

First I was afraid, then I was petrified. AND It was very First time for him!

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It’s been a few days since I blogged last time. Yes, I have had the blog constantly on my mind: “I must blog! I must do that, do this, write that, write this.” But honestly, I haven’t had the energy.

Lately my energy has been declining, so I think my iron in my blood is low again, so I need another round of infusion.

I fall asleep everywhere, and I mean everywhere, such as in school, on the sofa, on chairs, etc. It’s embarrassing, and it makes me mad. The last time I had this problem was in like 2021 or something. 

I haven’t been able to go to school and participate well, and that stresses me out. The assignments are piling up, and I have like no energy to sit in front of the computer, let alone to study. It’s frustrating to be honest.

Even though I sleep (as much as possible at night when the headache/migraine is calm), I still go back to bed after I have my son sent off to school, or I fall asleep later in the evening.

Yes, I have tried to get a doctor’s appointment to get blood samples taken for iron but also for my pancreas and blood sugar, but no success. No one wants to help me. So that is frustrating me as well.

Ok, enough about negativity– yes I feel it became a lot of negativity but this has been bothering me so much lately.

Last week I went to the dentist and finally picked up my new mouth guard even though I was terrified of using one. Why? I had one when I was 15/16 and slept with it for one night, and the day after I woke up completely deaf in my right ear. It took 2 of my siblings plus my mom using forks to get that mouth guard off my teeth, and one of my siblings screamed right in my ear, and I couldn’t hear anything.

That’s why I am terrified, but to my surprise, I actually slept with it—the night after. I used it a lot during the day and evening to get used to it and also to see if my hearing gets affected again. NOPE! Hallelujah!

Tonight (Tuesday, 11th November) will be the 5th night I have it on when I’m sleeping. Sure, let me be honest, I wake up every morning still terrified about my hearing but slowly getting used to wearing it.

Does it give me ache in jaws and head? Yes. Massively.

Is it worth it? Hopefully.

I got this for two/three reasons. 1. I grind my teeth when I’m sleeping, apparently. I don’t know. 2. To help relax my jaw muscles 3. To help with my headaches/migraines. So far? No clue if it works. I haven’t noticed a difference, but I’m still going to use it.

Birthday Party!

E was invited to his very first birthday party and I couldn’t be happier. Ofcourse I was there as well to help if needed (or support my son in meltdowns etc) but it all went so good. I actually cried of happiness!

At first I was (of course. As an autism mother you are always on your toes) nervous but also excited! My baby is going on his first birthday party.

Off to the bus stop we go!!

Safety first! That applies to the backpack as well!

Washing machine was very interesting!

Cooking and doing laundry.

Coloring & cutting

Fun!

On our way back home.

I can honestly say, I am super proud of E. No meltdowns. No scream. Curious and didn’t want to listen—yeah, of course.  New place, new people—new impressions.

Choose your battles.

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Good morning, my beautiful people! I hope you all are doing well. I’m currently back home. Was supposed to get E to school, but he had tantrums outside, so he woke the neighbors, so they were looking through their blinds.

I finally managed to get us back home (tantrum for 40 minutes outside with no luck), so today he will be home from school. With lack of sleep and this morning, I can honestly say, I am tired.

Yes, I am keeping my life in the blog raw and authentic. I’m not going to sugarcoat the reality. I’m sharing my life because I know I have other autistic families who read the blog, and we know the struggles sometimes. Some days are good, and some days are a bit of a struggle. It’s the reality of a family with a person who has special needs.

So today will be a day to stay home. This has started to happen daily now, so I have notified the school what’s going on and that we will be at school when the situation is calm and better. They are ok with that. Sadly, today will be a stay-at-home day.

So this was my morning. How is your morning?

Choose your battles.

~ Unknown

No, I do not have pictures of the situation and what happened. My focus is to calm the situation, and taking photos/videos during a breakdown is nothing I do.

Reason for this morning’s meltdown: bus.My son loves busses and these mornings for the past few days has been very difficult.  He wants to go for a ride in the buses, but we don’t need to take the bus to the school. The situation escalates every time, but what can I do? All I can do is handle the situations by remaining calm, try to calm down the situations, and keep my son safe.

“Autism doesn’t come with an instruction guide. It comes with a family who will never give up.”

~ Kerry Magro

A Good Communication With People For Your Autistic Child. Super Important!

Published on by ☆ Emma Santorini ☆Leave a comment

With an autistic child comes challenges but that doesn’t stop us.

My son wanted to go to the grocery store so off we went. Social training for him is extremely important after the preschools he has attended isolated him completely from other children etc so now we are working hard so he can be accepted by the society and to make him (most important) to grow up to a wonderful man.

We do not only social training around people. We also train and learn about safety when walking outside. To look at both ways before crossing the road. To stay aware of the surroundings and people.

We also do daily activities at home such as learning how to learn to clean, how to do laundry, do the dishes and sometimes how to make dinner/lunch (Only stir though. I’m still scared when it comes to the stove and oven).

My son is obsessed with laundry machines and can almost move to the laundry room just to sit infront of them and look.  He knows how to load and unload, where and how much detergent to apply, how to start etc. He has grown so much as a person and embracing his abilities and be there as a support makes him more independent.

Throw trash, grocery store & reward

When we go to the store, we always throw trash (even if we dont have trash we go there) so he knows where to throw the trash correctly. Recycling and how it works.

1 / throw trash

2 / grocery store & remain calm

3 / reward

At the grocery store today he didn’t have a tough moment. It went on smoothly. No meltdowns, no nothing. I was so (still am!) proud. I dont know about you but when my son is calm, behaving and is kind he gets a reward. This time was an ice cream.

Normally it is very loud noises, children screaming and alot of people so when E is in his zone to grab stuff and add in the cart, he don’t really see and is careful. I always apologize to people if accidents happen or if he isn’t careful. I also explain that he has autism and we are socializing training. 99.9% of the people is so understanding. Thank you so so much!

I am also very strict on how to talk to people and how to respect everyone (even workers, doesn’t matter which job they have) so after we have paid (yes he pay with my card and learns that as well) and we exit the store, I always say “Bye! thank you!” and my son has heard me say that so many times so he tries to say the same (sometimes you can hear the words, sometimes its just the sound that you can make out what he is saying) thing as me. Today he actually said, clearly “Thank you so much!” and a woman with two children said “aaaw” and smiled.

Everyone who works at the grocery store (and many in the area we live in) knows about my son, how he works, how to handle situations with me if it gets too much. I have explained everything and they are so understanding (the staff at the store).

When E said “thank you so much”, the woman in check out got so excited and happy so she said “you are so welcome E!” . That makes my heart so happy. The acceptance,  the understanding and that they have heard plus seen how everything works.

I am grateful that I moved here. Sure the preschool was awful for my son but after he started school, he has grown so much. If we lived where we did before, this development would never have happened.

Mind you that not every time goes wonderful. sometimes it’s completely horrible, I’m not gonna lie and sugar coat things. Sometimes E has ran out from the store with items when he has been super overwhelmed with emotions and it has been too much for him. The staff is understanding and is OK that those situations happens. They know I always pay, either the same day later (depending what the time is during the day) or the day after. I always call when I come home after situations like that and tell them what items was taken and when I’ll come to the store and pay. The fact that they trust me so much makes me forever feel grateful for them. I also always take pictures of the items or video where I explain what happened and which items it is. Never had a problem and the “team work” between us and the staff is amazing.

I am so happy and proud of myself that I took the decision to move from our old place to this new home.

Helpful tips; How I Calm My Autistic Child Down

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Goodmorning all of you beautiful souls! I hope you all are doing good and that you have a calm and stress-free Sunday.

Today on my little agenda / planner it says self care, clean & pack son’s backpack for tomorrow. 

Sundays for me is home spa day. Facial masks, hair mask, deep deeeeeep cleaning of my skin etc. I will also maybe dye my eyebrows, now I have no eyebrows – haha!

I will also try to start planning weekly dinners and become more productive with my life and get myself out of my bad mental health. babysteps though!

I do not drink coffee so my Pepsi max has to act like coffee for these pictures.

Raw and authentic

I’m keeping my blog raw, nothing is perfect in life. Having a child with special needs (I dont know how parents with children who dont have special needs lives so this is just my experiences) can make daily life a challenge. Before it complains about how the floor looks like, let me explain.

Due to the fact that my son is non-verbal (can not talk), his way of communication is showing things and try to say words but enlarge the words etc with signs. Him not being able to speak and express his feelings, wants and needs completely like other can makes him frustrated and sometimes he has tantrums and breakdowns which is super hard on him. My focus is to calm the situation down and to keep him safe.

The rooms etc with cleaning will come afterwards when the situation that had occurred is calm.

Today, this morning, E had one small moment when he tried to show me what he wanted and got frustrated. That’s why you can see some stuff on the floor. He throws stuff to make himself heard and understood.

and no, we dont not live filthy, dirty or any of that. Temporarily we have messy with stuff on floors but like I said, when moments and situations are calm I clean it.

Right now, I’m sitting down to breathe. To collect myself from the moment that happened. This is why my agenda / planner says cleaning.

If the moment didn’t occur,  I wouldn’t need to clean.

Please don’t attack me / bash me/ insult me for how I handle things and how the living situations are temporarily when moments happen. My focus is to calm my child down and the whole situation.

How do I manage to calm E down when having tantrum/meltdowns?

Remain calm and I’m not gonna lie, sometimes it’s hard to stay calm and not stress out due to the neighbors but I manage to remain calm. Hugs, kisses, sitting down on the floor, safe hands works. Whisper in his ear that he is safe. That I understand, see and hear his feelings and that I am here with him.

Every parent handle situations differently,  I know that and this works for us. Keep E safe and protected is all I care of.

Like Daniel Tiger in Daniel Tiger’s Neighborhood sings “Take a deep breathe and breathe out”.

I sing multiple times of the day to remind E to breathe. I only sing/say the part “take a deep breathe” and he continues with “and breathe out”.

If you have a child/ren, how do you handle situations? No judging, no shaming. Accepting and Respecting only.

Remember to take a deep breathe, remain calm and handle the situation with love and understanding.

Adventure plans? Phobias?

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Goodmorning / goodafternoon / good evening my beautiful sunflowers! I hope you all are doing well today! I’m fine, just tired. Had nightmare last night mixed with migraine.

The nightmare was about (this actually happened irl) the carlane we were in for 4 hours and what we saw when passing it. There was a massive accident that had happen and as we drove by it, we saw the front of the car to windshield was under a truck and beside that car was a body bag with a person in. So I had flashbacks to that. Scary situation but im glad E didn’t see it. I have actually never seen a body bag before irl.. And I have worked at hospital and seniors homes.. it was scary.

Anyway, enough about that flashback. We are currently on our way to do some adventure. We spoke about going to the Sweden’s “Golden Gate Bridge” but I dont know anymore. We’ll see what happens.

I have been to that bridge once in my life and I cried and had panic the whole way over. I am very scared and have phobias for bridges. How i got that phobia? When I was younger I saw a clip, I dont know if it was from a news station in America or someone had recorded it, of the Golden Gate Bridge (or maybe an other Bridge that looked similar) how the storm was making it swing back and forth and the road up and down. I think I was five when I saw that and that phobia has been stuck ever since. So going over bridges now and especially with my son with me, I have to stay calm even though I have panic inside of me.

Do you have any phobias?

So we’ll see how this goes if we go there. If we go there I’ll take pictures ofcourse. It’s very beautiful there. Nature, water and the bridge. Mind blowing how people can build something like that! I dont understand how to be honest but again, im not a person who works with that.

I will blog later. I’m gonna try become more active here.

Its June, I am ashamed and it’s soon time to go.

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why am I ashamed? because I have wanted to blog for a long long time but havent really had anything to blog about. My life has honestly been very down lately but I feel its getting a bit better.

I have started to “take care” of myself better, put myself first (well.. my son comes first but you get it). I have been distancing myself more from people due to have been surrounded by toxic people. Kinda detoxing from people so I can heal.

I even cut “friends” out from my life due to lies, scam etc. Scams? Lies? Yes, you read it right. Who I thought was my friend used me and manipulated me til I put my foot down and asked my best friend for help.

I even failed school due to my  son being sick so much so I missed out ~ ofcourse my son comes first! Don’t get me wrong ~ so I decided to stop attending or what to call, which means I failed school.

I have not picked up my cameras more than maybe twice since I was in Amsterdam. I lost the passion of using my cameras but have used my phone to take photos, which really havent been any “use” to show here on the blog nor Instagram.

I’ve stopped using social medias due to lost intests and feeling pressure to put on makeup, fix the esthetic feelings on photos etc just to please people. I was “like/following” hungry before but I realized .. whats the point? Why chase something that is no need when it comes to people who doesn’t care .. like genuinely cares about my content.. other than have a following of people who really actually care about my stuff  my photos, my thoughts etc. For me, that is more important. Having a connection with readers, followers etc.

So right now I’m focusing on myself while also trying to remember how to breathe and how to be alone instead of trying to be surrounded by people the whole time. The next two weeks will be a challenge for me. Switzerland , yes its time to go to Switzerland. I have honestly not been looking forward to it due to three reasons, 1. We are going with an other family that the husband/father I dislike.. like massively dislike. 2. Knowing the reality that im the one who’s gonna be the only parent on the trip while M will have fun (dont get me wrong, I love my son but sometimes I want to kinda.. walk around, breathe and just think by myself) 3. Switzerland is a very beautiful country from what I have googled and heard from people but its not really a country that “speaks” to me to come visit but I’m trying to think positive about it ~ first outside Sweden vacation with my son (even though the responsibilities will be 1000% on me) & new views to see & snap photos of ofcourse.

Today I have actually

✅️ emptied all the memory cards ✅️ Charged batteries to the cameras ✅️ Written a whole new list of our stuff to bring ✅️ Ordered stuff that is needed (medicines etc) ✅️ Packed down my camera gears

So now its only clothes, electronics etc that need to be packed down in the suitcase which I will do tomorrow while son is at school. Also a seperate bag for E’s stuff to have in car to entertain him when we arent at playgrounds on the road. I have also written a list of what to bring for E and the car ride . Yes it might sound ridiculous but I take precautions any time instead of his his tantrums (autistic & non verbal) and him being absolutely bored. Remind you that he is just seven years old so he ain’t getting electronics. What I have written on the list is just coloring pens, papers, toys, his stuffed animal, kickbike + helmet, football and few books. Something to keep him a bit occupied when not looking out through the windows which he loves when going on car rides.

Parents with children who travel , is there something I should think of?

This is the very first time we go outside Sweden and actually for a long car ride with E (son) so we dont really know but ofcourse im using my mama feelings but it feels like im missing something or somethings but dont know what.

Countdown has started and iam in my maniac mode of planning

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Countdown has started.. School is soon over and our family vacation is coming up.

Unfortunately i have missed too much in school, I have to re-study the course again. It sucks but what to do? My son has been sick a lot lately which has made me missed so many classes of the course so I decided to study it again from the beginning. Apparently it is a normal situation for parents who studies this course so I honestly don’t feel ashamed. Math isn’t really my subject I can master but last time I managed to go to school I almost broke down due to how much I have missed and how far ahead the others are compared to where iam so I  at that class restarted my book again, told my teacher and it was fine.

Countdowns; 21 days til course is over (school) for this semester • 52 days til the vacation.

I can finally tell you guys about the vacation. I’m honestly nervous. It is the first time we will ever go on a vacation this way with our son. As you might know , our son has autism 3 and is non-verbal so going to Switzerland by car will be a challenge. 

How come Switzerland? We honestly it was not my idea. We are actually going there with an other family who my husband knows and they suggested Switzerland. For me, I have no idea what to do there. Like I have never ever had any thoughts of going there but here we go. So iam in full massive planning maniac mode right now. Reading online about tips, ideas, recommendations etc on how to travel with a child with special needs. It is so hard!

Do you have any ideas? recommendations?  What to think of and what not to do, when it comes to travel by car with a child who has special needs?

This is all new to me honestly. I am very nervous to go this far by car with our son but I am planning where to stop and finding places for E to be able to run and play around at on our trip to Switzerland. Play areas, food stops, adventure lands etc.

imagine, we are going through the whole entire Sweden, Through Denmark and through Germany to go to Switzerland. We are also planning on going over to Italy etc for day trip and so if possible. A lot needs to be planned and Iam in full maniac mode of planning to make the trip smooth, fixing passports (done), lists, bags, equipment etc.

Not easy to go anywhere with a special need child . it’s scary but on same time iam excited.

A happy little boy who finally can..

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.. ride his kickbike. The pure happiness when we told him that he now could ride on his kickbike because they have brushed the stones away.

We went to a location to let him roam freely on his kickbike ~ ofcourse we kept an eye on him. The laughter, the smiles, the focus and everything. Made my heart jump with joy.

His dad wanted to try the kickbike as well (middle picture) and first E let him but wooh, the speed he had to stop M (dad) from riding it. Lol! Hilarious!

We stopped by a store and bought ice cream as well.  It was a fun little family day for a while before M had to go to work for a second time that day.

ofcourse I blurry my son’s face due to privacy and respect for my son.

I can not wait to have many more family days like this in the future. I know now we gonna have soooo many when the spring is finally here and soon summer. We love going on car rides to see the nature, sit outside and have picnics etcetera. 

What is your favorite thing about Spring?