Too much of everything
Being a special needs parent is different!
Imagine being overjoyed about your kid rolling of the couch - of course not because it hurt them but because they managed to roll over. Or being overjoyed because your baby shewed on... well anything really cause it means sparking that curiosity that most kids have early on.
Imagine being burnt out from worrying, from fighting for your kids needs and rights, from making every appointment, from waiting for the diagnosis, from being left to fend for your own family, from feeling like you are all alone.
But you're not! There are so many familys in the same situation and they need someone to connect with as well.
To be allegable for the Swedish Habiliation unit you need to first get the diagnosis wich leaves a lot of familys in nowhereland while they are waiting for the diagnosis. We waited for 9 months, however our specialist unit helped us getting assessed by a psycologist that could refer Freja onwards to the Habilitation unit. This is something many doesn't know but it is possible to get "in" without the diagnosis.
But even then, even when you get help from this unit, there is a lot of everything - too much of everything. Appointments, physical therapy, further investigation, preschool/school and so on. It puts a lot of pressure on special needs parents to be able to attend every appointment, all you want is to give your children the best preconditions moving forward.
And we, as many others, have other kids that you also wanna be able to give all that they need. But you are only one person and even if we share responsibility your kids need alone time with each parent and with both parents. Sometimes it feels like an impossible equation to solve.
At the beginning of autumn we will have an election here in Sweden and I've been thinking about where to put my vote. But there is one party that often prioritize inventions for special needs kids and adults so there is where my vote is turning.
I'm sorry to say that the sitting gouvernement tried to downsize these inventions with devestating results for many familys, and actually an adult woman died in a public bathroom after being denied extended assistance for amongst other help with bathroom - instead they withdrew some of the assistance she already had, even though she had a degenerative disease. Talk about putting people at risk. Another insident left a whole family dead - rumored that they had their help withdrawn or not granted wich left them in a hopeless situation, probably with two very depressed parents.
So... I would never vote for a party that puts the most vulnerable in our society at risk without owning the consequences of those choices. Cause they are on you, Stefan Löven.
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