My life behind the squares – Part 4

We had a transfer interview with the daycare and the caretaker in charge of Ellies start in kindergarten. We talked openly about the challenges, how she is such a restless girl with sooooo much energy, that she has a temper of another world ..the daycare agreed and supported what we said. We also told them that we already knew we wanted her checked to know if she has a diagnosis at some point at that she was geneticly exposed for having ADHD etc.

The kindergarten caretaker seemed very sceptic, and since she never met Ellie at the time we thought it was probably normal.

Our kindergarten have two groups of kids, and after talking it through with the leader who knew Ellie from daycare too, we decited it was best for the kids to be in each their groups. This way they would have their own space but would still see each other during the day if they wanted to.

The startup went pretty smooth, Alfie was a big help and it was clear she felt safe with him there. He started to take on this new role as protecting big brother, a side of him we rarely saw before, it was so nice and we really felt proud!

She of course refused to nap, still does, but we figured that, it didn’t surprice us, but the caretakers were pretty surpriced when it didn’t happen even after a few weeks.

Every day when she comes home she’s exhausted, yet she wakes up every single night with nightmares etc.

Back to Alfie

Getting back after a holiday has always been really hard for Alfie since he started kindergarten and this time was no different. On top his baby sister started kindergarten too which left him in a new role and also he started in this new prescool group for the oldest kids from both groups.

All of this was/is just too much. He started acting more out at home, mostly on me and Ellie. He started getting more aggressive, he started to hit, push, yell, say awfull things that I would never have though he could even imagine to say.. it was and it is worse than ever. When I zoome out it’s clear as day that he is just filled up. He acts out because he has no idea what else to do. He’s trying so hard!

The minute we walk out the door from kindergarten to go home he goes from calm and happy to angry and aggressive. And it kills me. It kills me to see him like that, to not know what to do! And at the same time it is so so hard to be in this aaaaall the time. To hear you little boy telling you over and over that he hope you will die in horrible ways, that he wants to run away, wants another family or that he will do bad things to himself just to hurt me. I know he doesn’t mean any of it. It’s said in anger and helplessness. But it hurts like hell.

As he’s getting older it’s become clear that he need a lot of sleep. He’s 5 and he still gets put to bed 6.30pm and sleeps 12-14 hours every night. But after the summer holiday when things got worse he also started to get restless when it’s bedtime. He can’t find pease.

We recently got a heavy duvet for both kids from Babydynen.dk (ad) and so far it’s been helping Alfie a lot, both when he feels restless at night, but also when he comes home and get some of his major rage outbursts. We take him up, comforts him and when he’s settled we sit him with the duvet over him to watch tv or iPad to help him relax.

Ellie needs more time to get used to new things, and the duvet isn’t her best friend yet, but I have a feeling it will get better!

Service info about the heavy duvets:

They have a 14 days trial, if it doesn’t help you can return it. They also have a sibling discount, so if you buy two you will get 50% off the second one.

We do everything we can to help, keep it slow and simple at home, not to make plans, to prepare him (and Ellie) if we have any plans. But nothing seems to help. It feels like his world is slowly crashing and I can’t help but to think of the girl from our family who had to come so far down before anyone saw the how much she needed help.

Every single day feels like one long conflict.

And on the other hand we have Ellie. Those two are like night and day and they have so different needs.

Aaaaand back to Ellie

After one month in kindergarten Ellies primary caretaker suddenly just took off. One day we just got an email saying she had left her job without saying goodbye to anyone. And a few days later there were 3 new kids starting in Ellies group and she just got lost. Suddenly noone in her group knew anything about her and her struggles anymore. And it really affected her. She started to get more restless than ever, she wakes up beeing so upset every night and her tantrums went from 5 to 500.

The meeting

Back to the meeting about Alfie. We had the first meeting back in september.

We told them about our concerns both because of his behavior but also backed up by the knowledge we have about the genetic risk our kids are in. We shared the story about the girl in our family who hid behind a facade for so many years before her entire world just collapsed. We told them that we have no intention of ‘dragging a diagnose over his head’ and that we of course hope none of our kids has one, but also that if they have we want to know as soon as possible to be able to help them the best way we can. We know that Alfred is Alfred, and no diagnose can change who he is! But he’s starting scool soon and that will require so much for from him. We’re concerned that he might not have the energy to both start something new, try to be social (which both requires a lot from him) and at the same time have energy to focus on the learning part. He is a smart kid, and I’m not worried he can’t handle the assigments, but it would be so much easier to know if he has any special needs we need to consider and work in to his and our everyday life.

Their reaction wasn’t what we dreamed of, but we knew before we started this, that even getting them to diagnose him would be a long and hard fight. We’ve read about and talked to people who went through this with kids in much worse situations than ours, and even then we learned that a lot of parents actually had to give op their jobs just to come through and fight for their kids.

They basicly kept telling us that until it was worse they didn’t think it would be relevant to check him for any diagnoses.

We just sat there and looked.. so.. we have to wait for our son to feel worse before you want to do anything? It seems so crazy!!

The caretaker from Alfies group that attended the meeting was so supportive. She was the only person in the room who made us feel understood. She kept saying things like ‘Maja, correct me if I’m wrong, but I don’t feel like you understand what Maja is actually saying’ or ‘okay.. but this doesn’t really answer the question about if he can get checked for a diagnose’. She was such a support and I don’t know what we would have done without her in this.

It ended up with a suggestion that they would come watch him in kindergarten for a few times and then they would make a profile that should tell us more about his stragegies. After that we should meet with the psychologist and after that we all would meet together again.

When I picked up the kids that afternoon I pulled the caretaker aside to tell her thank you for beeing so understanding and supportive. She just looked at me with a sad face and told me she’d been through the exact same thing with her daughter years ago, and that she knew what a struggle we have in front of us and what a nightmare this process could be.

We kept in touch and we would talk almost on a dayly basis with the primary caretaker about how things were going.

And it wasn’t going well. His outbursts got worse and after a few weeks there was a really ugly episode that ended up with Alfie giving me a bloodnose. We both ended up crying and I knew he felt so bad, he never ment to do it, but he just couldn’t control himself.

After that our caretaker advised us to call the psychologist. We had another 3 weeks before our meeting and with the way things escalated she thought it would be best if we talked to her as soon as possible. And we did.

The psychologist adviced us to make a reporting to the local authoroity and have family counseling come to our home and watch him. We explained that we didn’t thought that would work, because he would put on his ‘mask’ just as he does in front of family and friends and as he do in kindergarten. But no matter what we said it just felt like she put all responsibilities on someone else. She even said that if they didn’t see anything in kindergarten it was out of her hands.

It was so frustrating. How about all the things we told them? Didn’t they believe us? And on top of that the high genetic risk.. wasn’t any of this enough for them to at least consider getting him checked?

And back to Ellie again

Back to Ellie.. Last year she started to complain that her stomach hurt. It got worse and she would say it like 20 times a day. We took her to the doctor who refered her to a childrens doctor, but she didn’t find anything and said it was probably just constipation. It came and passed a lot during the next year, but then during the summer it started to get worse. And on top she would tell us aaaaaaall the time that she was hungry. She cried and cried when we told her she couldn’t have any more food and it was frustrating for both her and us. A few times she even vomited because she had too much food. My husband and I started to wonder if she might have problems to feel when she was full. And so we took her to the doctor again a few weeks ago. She checked her and again, she didn’t find anything. Then she started to ask if she was always this restless and I explained our situation to her. She told me she didn’t think Ellie had any pains or was hungry, but that her restlessness could cause her to say or even believe it. She though we should get her checked for a diagnose. My first though was just ‘no.. no I can’t do that now too’. I am so tired from this. It feels like it just never ends. And having just a little taste of how it goes with Alfie just made me scared to do it with one more kid at the same time. But I knew she was probably right, and so the next day I talked to a caretaker from Ellies group, told her what the doctor told me. She was just another sceptical person, thought it was exaggerated and that it came out of the blue. And all I could think was ‘Well of course you do, you know nothing about Ellie’. Because when Ellies primary caretaker just took off noone knew anything about her anymore. Again, I felt frustrated!

Next day I talked to another caretaker from Ellies group, she was supposed to be her new primary person, we had asked to be given a new one since Ellie had some history that we would like to be able to talk to someone about. She was very sweet and understanding, had been reading up on Ellies files and I thought ‘okay, maybe it’s not that bad after all’.. until I picked her up that afternoon and the first caretaker I told about our visit to the doctor told me that I should not talk to anyone else about this and that she was the person who handled these kind of things because she had a higher education – she was clearly offended. It felt like it was all about her honor.. And I felt like telling her a thing or two, but I didn’t.. instead I figured if she was the one who was gonna help us through this I needed to be on good terms with her. I tried to get back on the subject and ask what she thought we should do, but she just changed the subject and walked away. Great.

To be continued..

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