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Our life these days.


mimi

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It seems like we have lost control of our lives these days. Instead of play dates and after school snacks my life has turned into Dr's appointments, therapy appointments, appointments with lawyers, medical social workers, school social workers, EFMP appointments, etc. In the next 2 weeks we have multiple appointments per day.

 

No one tells you how hard this is. Don't get me wrong I love the little guy beyond words. He is making amazing strides forward. In September he was 100% non-verbal. Now he has about 15-20 words and signs. The work is paying off but he takes 100% constant supervision and input. When you add that to all the time spent on the phone making appointments and such......well I am worn out.

 

Financially speaking......well....again no one tells you how expensive this is either. His therapy tools cost $10-15 per day. More if he is having a bad day/week. This month he also needed 2 new therapy tools for a total of another $150 on top of the daily costs. Plus all the extra gas for going to appointments that are all 30-40 min away.

 

We are also taking his diet "clean" so we are cutting out all the *stuff* from his diet. So there is THAT as well.

 

My life in the last 4 mths has gone in a completely new and slightly terrifying direction. I don't know what I am doing and everyday is something new. He now has a tremor in his hands. So now we get to start all the appointments with that specialist. There are days when he stumps even the professionals.

 

Okay I have used all my free time and he needs me. Thanks for listening to me whine ;)

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I'm sorry this is so tough - but you WILL get through it and the results WILL be worth it!

 

Is there a family friend or someone who wants to help, but doesn't know how? That person could maybe be given a copy of your calendar and a list of the docs, etc to make appts for you?

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Thank you all. Dorothy I did have a friend who offered to help and I put her to work researching how to cut the daily therapy costs and she came up with some great ideas. Sometimes a full night's sleep does wonders for your research abilities.

Plinda you are not kidding. His therapy costs about $2,000 a month, plus the therapy tools and their daily costs. In April he will start preschool which will cost $100,000 a year, plus the cost of therapy after school and on weekends.  We are looking at furniture for his room and are having to go with the highest end stuff they make ($400 bookshelves) because he destroys everything he touches. Solid wood? Takes 3 days and it is splintered and in shreds. I have never seen anything like it.

 

Ang, You have no idea how much that means to me. Thank you. And congratulations again on your newest little one!

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You haven't been around on LLNOE lately, and I appreciate you letting us know what is going on in your lives.  Your son's challenges would be enough for any parent to manage but knowing that you have five other children who also need your time and attention leaves me in awe of you.  Please know that you're in our thoughts and we're sending best wishes your way for whatever you need the most of.

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Wow you have more then your hands full! I can't begin to imagine your daily life and how your are managing it. Prayers for strength!

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Thanks ladies I appreciate it. Today's phone calls have to do with housing. Why is it that no one is competent to do their jobs? We filed a petition, signed by my husband's command, a month ago requesting permission to be allowed to move to a larger house within my husband's rank. My husband has went in to check on the progress and told it was in the works. I call this morning and find out it has not even been filed for consideration yet. They are going to file it "today or tomorrow" and we should have a decision by the end of next week. I am so irritated. Add to that that my dishwasher has been broken for a week and 2 different repair men have been out here and both just threw their hands up and said nothing could be done and it needs to be replaced. Of course they are not replacing it. So I called the PR person at the housing office this morning to complain and was told "there is nothing in the system about it". So he is going to "call some people" and get back to me. I am just livid. I have been hand washing our dishes for the last week and am so over it (I know "first world problem" but I have enough to do already!).

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Mimi, I would argue against buying expensive furniture. You have a toddler/preschooler who is harmful to himself and others and are short of funds. But even if you were Bill Gates I would say he doesn't need a bookcase. A mattress on the floor (or a bed if he has one and does well in it). Soft toys, cheerful walls, one of your murals...

 

With his destruction and lability I wouldn't have stuff in there. It should be a safe place for him to sleep and play, it doesn't need to be more.

 

I am writing from the perspective of mother (my kids don't have bookshelves in their room. Neither do I. And we have thousands of books. Almost 10 dd will have some shelves built in before middle school) and as someone who has worked extensively with kids like your son.

 

I hope your dishwasher is working soon. As always, I admire your perseverance in caring for your family.

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Mimi, I would argue against buying expensive furniture. You have a toddler/preschooler who is harmful to himself and others and are short of funds. But even if you were Bill Gates I would say he doesn't need a bookcase. A mattress on the floor (or a bed if he has one and does well in it). Soft toys, cheerful walls, one of your murals...

 

With his destruction and lability I wouldn't have stuff in there. It should be a safe place for him to sleep and play, it doesn't need to be more.

 

I am writing from the perspective of mother (my kids don't have bookshelves in their room. Neither do I. And we have thousands of books. Almost 10 dd will have some shelves built in before middle school) and as someone who has worked extensively with kids like your son.

 

I hope your dishwasher is working soon. As always, I admire your perseverance in caring for your family.

We are looking at toy storage for his room and the little girls rooms.When I say bookshelf I meant a low to the ground storage unit like they use in preschools. It is $350 and comes with a lifetime guarantee. So if he does break it we will get a new one for free. I can go with something lighter weight in the little girls room but he needs something that will stand up to him. Right now it is dangerous because he is breaking pieces off of the units we have tried and they are sharp pieces of wood. We stripped his room down to nothing but the bed when he was at his worst self harming behavior. However he is doing much better now with that behavior. (out of this month he has only had self harming behavior twice when he had a stomach bug). He has so many therapy toys and such that we have to have somewhere to put them. The only other room in the house they could go in is the living room and between the trampoline we had to get him, the rocking chair he needs for his stimming, the spinner he needs for his stimming, etc the room is so over crowded you just can't walk.

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I certainly hope that you get some resolution with the dishwasher is that is the LAST thing that you need to deal with and have time for! It seems like it should be an easy fix if someone would just do their job and approve the paperwork.

 

Sorry you are dealing with this. I hope things ease up for you a bit. I honestly had only a vague idea how much work a special needs kiddo is (from friends that have them) and your posts have enlightened me quite a bit. I have reached out to them more (and would to you if you were near me) to offer an ear or a break or whatever I can.

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