My life behind the squares – Part 5

It’s been a while since my last update. I needed to process things, and I still am.

It feels like this part is still something we’re ‘in’ and somehow that makes it so much harder to write about.

Meeting the psychologist

We went to a meeting with the psychologist. When we came we all just looked at each other. My husband broke the silence by saying ‘sooo… we’re not really sure why we’re here’.

She just looked at both of us ans started laughing. She felt the exact same.

But somehow we managed to get those two ours to fly by in no time.

Basicly she told us that after the observation they didn’t have any concerns, and even though we weren’t supposed to know this until the meeting with the special needs caretaker and the staff from kindergarten the following week, they didn’t see any reason to go on to get him checked for any diagnoses.

My heart fell to the floor and the frustration rushed up in me.

‘But what about all the things we’ve told you? He is NOT okay! I need to know why, what’s going on. We’ve cancelled all appointments with friends and family for months, we prepare him for everything, we do everything we know to. We can’t even take him to a supermarked to pick up a few things without him going crazy. What are we supposed to do? Who will help us? And what will happen when he starts scool? It took him two years to adapt to kindergarten and it’s still so so so freaking hard on him! I don’t know what to do’. The words just came out like I was boiling over.

She said a lot of ‘annoying’ psychologist stuff like ‘I hear you’ bla bla bla.. I know she ment Well, but I honestly just felt like she was trying to get rid of us and move on.

She is pretty young, and we all have to start somewhere, but in situations like this I would feel more safe with someone who have seen more.

She kept saying that she thought we should turn him in to the local athority and get family advisors from there out to watch him in our home. We repeated that we didn’t think he would react when they were there, told her that we tryed to install a camera at home to catch some of the episodes to show them, but that he after a few minutes saw it and asked ‘is this to know if I do anything I’m not supposed to?’. He is such a clever boy, maybe even a little too clever for his own good sometimes. But she didn’t change her mind. And she told us that she never heard about this masking (acting VERY different at home compared to beeing amongst other people) before, and that is defenitely didn’t had anything to do with a diagnose.

I just kept thinking ‘but what does it have to do with then? What should we do to help him? We need help’.

I even told her how he gets all scared when he walks out the door from kindergarten and then a kid comes by to try talk to him after he ‘looses his mask’.. he can’t deal with it, he can’t step back that quickly, the mask is easier to take off than on..

Then, at last she said, that is we wanted him diagnosed and really thought that was the way, she would give us a ‘buttom’ that we could press at any time, but that she first of all didn’t think he would be accepted to go through because they only have time

To take 50% of the cases of kids who are reccomended to get checked and that she also thought it would be too hard on him to go through.

50%.. only 50% of the kids who are reccomended to get checked out passes because of low resources.. that is horrible!

And too hard on him? I mean.. we’re not doing this because we think it’s fun or easy.. we’re doing it to help him!

We went out with a lot of questions and even more frustrations than we had before we went in. The next meeting seemed meaningless. We already knew what they were gonna say.. but then again.. she gave us an exit.. one that we would hardly get any use of from what she said, but did we have to try? Would it make us bad parents if we pushed it through? Would he be able to handle it? And if we don’y and find out later on that there is something wrong, would we ever forgive ourselves for not taking this chance?

The big meeting

One week later we went to the next meeting. Besides talking about what we already talked about with the psychologist we were also to hear some results of a ‘test’ they made from watching Alfie and asking the caretakers a lot of questions about his abilities in different matters, such as his language, his social skills etc compared to his age.

We started the meeting with that. The special needs caretaker started. She told about the things they have been focusing on and smiled. Them she showed us a curve. And he was above the curve on every point except for one – social skills. I didn’t know what to say. At one point I felt proud.. my little clever boy!! He was blowing the scale! But on the other hand I was frustrated, because.. it was just one test. This wasn’t a full picture.

But then she started to talk. She said that this was the reason that a test like this couldn’t be seen alone. Because looking at this there was nothing to worry about.

And then She added something. For the past few months she has been running a program with the boys from the group that are going to scool this summer. It’s a program about anger, what anger feels like, why we feel it, how we feel it and how we can react on it.

She told us that she had been paying attention to him during this and that she actually saw a boy that never took a break, that was so in to what he’s doing and that is trying almost too hard. Where the other boys sometimes looked out the window, played with a pencil or whatever they did to take those natural breaks sometimes, Alfie never looked away. When he was asked something he was clearly doing everything in his power to look and sound perfect, to figure out what they wanted him to say or do.

Whenever he was teased, disturbed, whenever he had to compromise he never reacted. They told us that thinking of that, it was no wonder he gets aggressive and extroverted when he gets home, because he was a ticking bomb waiting to explode all day.

We talked back and forth. I again expressed my concerns that we needed some help. How would we know how to learn him to show feelings during the day, we didn’t saw that problem at home, so we didn’t have the option to act when it happened. Who could and would help us?

They kept telling us to talk to the family advisor. We read up on that since the last meeting and had a lot of warnings about not going there. They didn’t have the money to help, the staff was constantly replaced and it might end up putting us and him in an even worse situation for a number of reasons.

Then sunddenly the special needs caretaker said ‘I know this was not what we agreed on (looked at the psychologist) but I’m starting to change my mind. I think we should go on with this and get him checked.

We didn’t knew what to say. We asked about the thing about getting approved and if we would even have any chance, and she agreed she wasn’t sure, but that if we waited a few months (the system is under a lot of pressure now because they have to evalue all kids who need to postpone scool start for another year) we would have a better chance.

She told us that it was a big decision and that she didn’t think we should be the ones to take it.

If we are to be accepted we should expect 4-5 months before they can start. There’s no telling how long it takes, they had a girl now who were a bit like Alfie, they weren’t sure, so she had to come to the hospital 6 hours a day every day for a month to make sure they didn’t overlook anything..

This would mean he would start this at the same time as the big kids move to their new scool and start adjusting there before the ‘real start’ after summer. This is a big concern for us. One thing is that it’s really hard on him to start something new, another is that he’s mostly struggleing on the social level. If he were to start something new and only be there for a short time and at the same time be going to the hospital several times a week it would be really hard on everyone. We talked about keeping him in kindergarten until after the summer holiday, but again, that would mean a huge setback on the social level and he would be so upset to be ‘left behind’ without his friends he were supposed to start scool with. We all agreed that he is ready for scool, he loves doing asignmemts, he’s so smart and he wouldn’t thrive beeing held back in kindergarten for another year. But this is all guessing, nothing is certain yet.

And so we agreed to meet again after christmas a talk again.

What about Ellie?

After the meeting i asked the Leader from daycare if I could have a word with her about Ellie. Since last time I tried to talk to the caretaker from her group I never heard anything more, and I wanted to hear what she had to say since she’s the only one left who knows Ellies history. She never heard about the things I told the caretaker. No surprice. But she was very understanding and thought we should take it to a meeting with a special needs caretaker, a psychologist and a Physiotherapist/occupational therapist occupational therapist (much as we started with Alfie). She asked about the Physiotherapist we went to last year and if we should call her in again, but I told her she was young and didn’t seem to have much experience with cases like Ellies, so we agreed we needed someone more experienced.

After this we left. We didn’t say much to eachother. We were both filled up. Releaf, questions, worries and everything inbetween. Suddenly we felt heard. And yet we didn’t feel confident this was ‘it’. What if they would change their minds before our next meeting? How would we get through this? Two kids going through this while already struggleing so much. My husband and I having to keep our heads cold and above water for another 6 months at least. More struggles, more worries, more questions, more stress, more bad consience.. we already feel like we’re only just getting through the days, some days more gracefull than others. Afraid that we’re doing everything wrong. Desperately looking for air, a break, a moment of silence.

And now what?

About 4 months ago I took a consultent job at a Hotel as SoMe and Event manager. I love it. But it takes up a lot of time, and with my photo business on the side I’m working a lot. We need the money, so I can’t change much. My husband is home looking for a job, lots of hours alone with the kids. He’s doing really great, but it’s so stressfull and hard on him to be alone with them, and I have no idea what we will do when he gets a job. Who will take the kids to the hospital if they both get cleared to be checked out? Who will pick them up early because they can’t handle the long days? How are we supposed to be good parents and do ‘life’ at the same time? Will we loose all of our friends?

I mean, parents with perfectly functioning kids are struggleing. How are we supposed to get through with what we have? Sometimes it feels like the burden we have is too heavy for us, that we’re constantly on the edge of breaking. No break. No getting up for air.

I don’t know.

But for now we’re taking one day at a time. Sometimes we fail. We appoligize. We kiss. We hug. We make up. And then we try again tomorrow.

My mum is working as a teacher and went to a reading with a specialist in ADHD. She called me after, told me it was really great, that the women who was speaking was a mother and her daughter has ADHD. She’d been working with parents, kids and institutions who had connections to people with ADHD to help and guide them. We are currently trying to figure out if she would be able to come home to us, give us some advice and guidence. Maybe for Anders, and even though Ellie doesn’t have a diagnose (yet?) she might be able to help with her too. It’s hard to know who to ask for help. Who to ask to help us find the right help. We’re just trying. And I hope we’ll find someone who is just the right person (and affordable) soon.

We tryed to call the family advisors to talk to them about what woulf happen if we went to them, but they just keep pushing us over to someone else and noone will help, just pass us on.. so.. we don’t really have much faith in getting any help from there.

I guess this is just life. Living your own story, finding your own path and trying the best you can. I know we will find the path.. but right now we feel lost, and we are just really looking forward to see a little light and find our way to where we are supposed to be.

To be continued in the new year..

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