I clearly remember that my first thought for the the day was: High Functioning my ass….
Not something normal to be a person’s first thought, but if you had the night I had, you would understand. Abby’s anxiety was out of control last night and she would scream blue murder if she would wake up and realize I am not holding her. I am right next to her. Like literally next to her in bed. Just not holding her. She would tap me in the face to wake me to hold her. That was my whole night. Constant. Non stop.
The rest of the day has not gone any better. We discovered our hallway cupboard – the one that has ALL our bedding, blankets etc in, has mold in it. So everything is on the floor in the bathroom at the moment, to get washed. So that is chaos by itself. But because of Abby’s anxiety she won’t even go to the bathroom by herself. So she holds it until it is almost too late. Run to the toilet screaming for one of us to come with, she can’t be alone. We would be too late resulting in her wetting herself, the floor and ALL the bedding on the floor. Wipe and repeat. Wipe and repeat.
In the middle of all this, Sky has been acting out like crazy. To a point where I actually decided to put her in a school. I have been in tears most of the evening and my spirit is just too tired.
We had to go to Kleinskool today – Kleinskool is an informal settlement just outside our city. I do charity work there and needed to go drop things. They are working on the roads and we ended up being stuck in traffic for hours. With a constant: “Mommy take me out of the seat. Mommy I need you”. While she is crying and leaning out of her car seat clawing on my arm to get her closer to me.
By the time we got home, I just had enough of this day. Just to find the neighbors left an anonymous note telling us that our dog barked the whole time we were out and we better make a plan to stop her barking while we are out. The dog has very bad separation anxiety and is with us 90% of the time. We can’t take that huge dog with us in the car for hours. So you know what neighbors, screw you.
My body has also been acting up and the doctors has narrowed it down to either early menopause or fybromaligia. So there is that…
So it is 23:45 and I now have to work because I could not do any work during the day because of the children’s constant needs. It just never stopped. My brain is tired. My body is tired. My spirit is tired.
But tomorrow (okay I have 15 more minutes to feel sorry for myself) is a new day. Big girl panties on…
Our 3 year old has extreme anxiety… That statement can mean so much to so many people. It can mean your child don’t want to go to bed alone or get nervous going to school or are thinking twice before going down a slide. For us, with a child with autism, social anxiety and ocd it means:
For the last week Abby’s anxiety has been out of control. Last Thursday she woke up and said to me: “Mommy, feel my chest”. Her heart was beating out of her chest. We had to go out the day and I knew that was the reason for it. I begged her to stay home with me rather, it was school holidays and the play area where Sky will have her ballet will be filled with screaming toddlers. She would have nothing of it and demanded that we go with daddy and Sky. Against my better judgement, I gave in. We walked into the play area and chaos started from the first second. She immediately grabbed onto my neck and crying because children were too close to her and wanted to touch her or the things she wanted to play with. I walked out within 2 minutes of arriving. I took her to another space, but they were also busier than usual and she was in total panic mode. We couldn’t just leave Sky and the rest so had to ride the hour out in the center. I found a restaurant that was “not too busy” and had booths (booths are great). I pushed her in the corner of a booth and sat next to her, sheltering her from people. I put her earphones and phone on to drown out sounds. We sat there for an hour before we could get her to function enough to walk out.
Well, it is a week later and she is still not functioning without me. She won’t be left alone for a second – day and night. She would rather wee her pants than go to the toilet alone. While 3 of us are right here in the house with her. We have to sit with her on the loo, if she has a bath, Sky baths with her and still she needs an adult to sit with them. Night time becomes chaos. The dark scares the daylights out of her (pun intended I suppose!). We have 2 lights on in the room, the toilet light is on and the dining room light to shine even more light into the room. Still she will not sleep even just next to me. She holds onto me, pulling my neck right next to her face. If I move she is awake and ask where I am going.
As you can imagine this mama bear is tired, worried and emotional. We have tried so many things and the anxiety is just there. When we ask her what she is afraid of, she says she saw a wolf with a pig’s tail that wants to eat her. And no matter how much we try, we can’t get her to calm down about it. And the anxiety causes her to not eat. Yesterday for the first time in a week she ate about 4 bites of my pasta and last night she ate a bit of meat. Other than that, the only things I could get in her the past week is Pringles, grapes and baby Squish.
I am working 2 jobs and taking care of the house in all of this chaos and I know that I will need to do some massive research to get her some help. And then we are dealing with Sky – she is only 5 and we sometimes forget that because of her smart mouth. But she has really been acting out because she needs attention as well and mommy is taking care of Abby, she just can’t fit quality time in with her. Hubby is there and doing as much as he can to help and really takes care of Sky but she is really feeling the strain. Especially because if I have to work, I am asking her to not leave her sister alone. So she is taking on more responsibly than what a 5 year old needs to have. Ever. And with that comes a real bad attitude. She is giving us lip about everything and this mama bear is tired and irritated. So let’s just say life is a bit tense in our home at the moment.
But we are putting on our big girl panties and taking care of business, one minute at a time. And who needs sleep in anyway???
I realized that Abby will eat much much more if she didn’t have to actually touch her food. Plastic forks etc is a big no no as well. Metal is also not a great option for her. So if I feed her with my hand she will eat. Some things I obviously can’t feed her with my hand so I have started doing some searching. i found these amazing little things. “Fruit sticks” They are made from bamboo, so they are not only cheap, re-usable and ‘not plastic or metal’, but also not damaging the planet.
If she wants a full apple, I can actually poke one in each side and she can eat them, holding the little handles.
She prefers fruit to anything else, so it helps a lot if I give her some cut up fruit and she can eat it with her little ‘stick’.
No messy hands – she usually goes into sensory overdrive when she touches fruit. She would cry, pull faces, panic sets in as she tries to get her hands clean. Her OCD kicks in to a point where she just can’t function.
So, yeah for small miracles.
They even work great for fruit bars
We have discovered that Abby is a little beach bum! Yeah! So on Friday evening we had to drop something down at the beach front and the girls begged us to let them go to the beach. So we went down to the beach and they loved playing in the sand. We then went to McD’s for ice cream. Everything seemed so ‘normal’. And I sometimes wonder if parents realize that there are parents that would anything for this kind of normal. Abby did so well and we were so proud of her. She was out and about around people, no tantrums. NOTHING.
It obviously only lasted until we hit home – this is a normal situation for a lot of autism parents. As soon as they get back into their safe space they ‘let go’ and well, all hell breaks loose. She had a meltdown but we got her to bed quickly and I just held her until she fell asleep.
Tonight we went to the Boardwalk and she again did so well. My heart just wants to burst with pride. We came home and there were no meltdowns tonight. She just asked to go to bed as soon as we got home.
It is the small victories. 🙂
I get asked that question a lot and my answer is always the same – I do not know how I would have coped with Abby, without Sky. She might only be 2 years older than her, but she is such a mother hen to her little sister. She makes sure Abby does not get into things she should not – and trust me that is very very often. She makes sure Abby is safe when she is out of my sight. She makes sure Abby wipes – long story but she has appointed herself as toilet police!
This morning our garden services arrived. I did not really expect them, so I was caught off guard. Any parent that deals with a child that is noise sensitive knows garden services are the pits. And noise sensitive autistic children really takes it bad. Not only is the noise crazy for them, but also having to deal with strangers in their space. Abby goes into total panic mode. She holds her ears, cries, runs, hides and she is shaking from pure fear.
She hold on to me for dear life and everything comes to a hold. The whole household goes into action to make sure she is okay.
So me being caught off guard, I had to run to open the gate for them. Take down wet washing I just put on the line. I was worried because now Abby is alone with Sky in the house. I get inside, run to her, just to find Sky (my FOUR year old) has taken her into their room. Closed the door. She could not find Abby’s earphones and phone to block the sound out, so she took her own phone that she HATES sharing, put it on full volume to block the noise from the machines out and is sitting on Abby’s bed, holding her.
I just cracked. I burst out in tears. I could not have asked for a better older sister for Abby than Sky. She really made this momma proud. Yeah for older siblings!
Ps, don’t be fooled into thinking that they get along. They are real siblings that fights about everything!
So everybody on our SPD support group are raving about these pod swings. You don’t see a sensory room without one. So when I saw some on a sale, I got 2. I know the “science” behind it, but still was a bit skeptical. How can a bag hanging from the ceiling help? Well, it does!! We just had the garden services in and that usually cause huge amounts of chaos in this house. As soon as the first lawnmower starts Abby starts running, hides in her room and won’t come out from under her blanket. Today she got into her swing and stayed there for more than half of the cut. She did then get scared and came to sit with me on the couch. But that is a HUGE improvement. She found a safe place!! Thank GOODNESS!
Her sister on the other hand, needs a lot of input as well, so she is using it as a crazy swing. The amount of times I had to tell her to calm down on the thing in the past day, is crazy. She kicks and swings and goes wild. Which is also great, she is getting the input she needs. Both our girls as SPD, but totally different problem areas. Living with 2 girls under the age of 5 both with SPD and one with Autism is sometimes (okay always) chaos. So every single thing that we can do to bring some calm, we are doing. So is the pod swing worth it??
EVERY SINGLE CENT!!!
We are busy converting our whole home into a sensory room / area. So I will be posting more about that soon. Winter is coming in SA and every SPD fear the cold. Not only is it difficult to keep jackets and shoes on them, but also difficult keeping them busy. This mom is on a mission to make this Winter work.
Just some specs:
The pod swing can take up to 80kg.
It is attached to the roof. I will create a post to show how to install it soon.
It is sturdy and safe
It has an inflatable seat for comfort.
Today I had to choose – a neat house (well sort of neat) or my child. My child won and I now have, in the middle of my living area, where there use to be a dining room, a therapy room. With trampoline, the works.
I am sure I will get used to how it looks with time and I still have to move things around and finish the project, but ‘by society standards’ it looks horrid. My house is a mess. BUT I can give Abby the 3 x 15 min sessions a day she needs for therapy. Sky is also enjoying the space as we realized that she also has some sensory issues – nothing as severe as Abby’s, but she needs some therapy as well. Her low muscle tone is something we have been aware of for a while and her core strength is something that needs a lot of attention. So here I sit in the middle of the chaos. We had to choose to live by society’s standard or to give our children the best we can. It was actually an easy enough decision then. We never really cared for what people think.
We have been back to the doctor and he suggested we visit a pediatric neurologist in Cape Town with Abby. We are 99% sure she has Aspergers (high functioning Autism) but she is too young to diagnose her officially and it will have to be done by a pediatric neurologist. There are non in Port Elizabeth. Sigh.
It has been a long 13 months but we know that everything will be okay. She has such a wicked sense of humor and she loves us and her sister so much. She just needs help to cope with all the sensory input the world throws at her. Things just gets too much for her on a daily basis. But we do our therapy and we do our play and she is doing so well. We are so proud of our little miracle.
**** Just a note – we are okay with the diagnoses. We deal with it. This is not a ‘oh shame, feel sorry for us’ post. Also, although we really appreciate it, encouraging words like: Oh she will grow out of it, really makes it worse not better. We’ve done the research, we know what we are in for, and it is okay with our hearts.
We are working towards having all of these items in the room. We are getting there…