(First let me apologize, this is more of a rambling than anything, I am trying to clear my head, write something thoughtful, and watch my floppy handed son for a freak out session because his favorite show is on and his siblings are getting close to him)
I work 50 to 75 hours a week, no that does not include time at home, so with all these appointments that are coming together, I am struggling.
Tomorrow we have a 845 for the results of his EEG, and then hopefully he can go back on his meds.
Monday we have an initial intake at 2 in Gainesville and and Allergist appointment at 5
Then on the 8th SSI Interview and Application
Then on the 15th the initial Appointment with Psych at the hospital.
Match that up with the endless phone calls to the health department, follow up calls to doctors to make sure that we are heard, social services, insurance for coverage denials, pediatricians, research facilities...and there just isn't enough time in the world. Oh and not to mention the follow up appointments and recommendations that will come from the aforementioned appointments.
To balance Gunnar's needs with my work load at my "I'm getting paid to do this" job - its super difficult to balance...then add in the housework, the kids homework, and attention my other 3 adorable kids needs and I need the 24 hours in a day to get stuff done...and then additional time to sleep.
I recently read an article that successful people really use their weekends to relax, they don't do housework or routine shopping, or improvement projects, the relax, go out with friends, they have fun. I don't know what fun is anymore. All I use my weekends for is housework, catch up calls, applications, intake forms, and repairs on things that got caught up in an episode.
I have way to many balls up in the air, I am afraid that I am going to drop one and then it will be like dominos and everything will fall with it.
So here is what I was originally intending to write down:
1. Give me a night that I don't have to worry about the housework and can just focus on their kids. I'm not saying you have to clean my nasty toilets, but offer to make a meal, pick up their dry cleaning, do a couple of loads of laundry, send over your cleaning lady for a quick or thorough scrub (how generous do you feel).
2. Network with and for me. Maybe your Special Needs Mom feels alone, maybe she doesn't know anyone in a similar situation, but you do. Get them in touch with each other. Do a little research on your own for them...did you hear something on the news? read an article? Put us in touch with those resources.
3. Don't tell me that everything is going to be ok. Not only is it insulting, it's really not realistic for many of us. We have tons of things to think about, get down, set up, and plan for. There is no easy fix for what we are going through, no amount of love will cure them, no magic pills. We have endless appointments to set up, a future with and without us to plan for...it's not ideal and it's certainly not ok.
4. Make me accept your help. We feel like no one is going to put in as much time and effort as well will, and we don't want to seem vulnerable. We feel like if we let down our guard then we will loose control. We feel like if we let you help, you will feel burdened by us. So if you want to help, mean it, and make us accept it.
5. Volunteer to fight for our cause. Do a walk, bake sale, donate, volunteer your time at a clinic. The more you learn about my cause, the better you know my kid, the more connected I feel to you.
and finally...
6. Accept us. You might think that this is easy, but it's not. A lot of our time is absorbed by making ends meet financially, taking care of our kids, and grabbing sleep while we can. Don't be offended if we can't come out. Don't think that my kid has a disease that's contagious - he's not. The best thing that you can do for him right now is help him socialize, with understanding. Don't run for the hills.
Thursday, April 25, 2013
Tuesday, April 23, 2013
What I have learned in the 6 months I have been seeking answers and help for my son. (A shockingly brief over view)
6 months. 6 months of applications, rejections, missed appointment deadlines, un-returned phone calls, I can't help you's. 6 months, and this is what I have learned, and albeit, it may not seem like much, but it is all stuff I wish someone had honestly told me before we started out journey.
I should start out this way, with a little back story first. And when I say little...I mean bare bones story...
My son, Gunnar, is 6, he has ASD, and we have already been fighting 4 years to get a diagnosis for him. His 2nd Pediatrician and I had long suspected that he was somewhere on the spectrum, but there is a lot of hoops to go through to obtain a formal diagnosis. And, naively, I thought that since I had been fighting so hard to prevent him from slipping through the cracks that I was a pro...and I was wrong.
You have to call at least twice a day. If you don't you will get lost in the shuffle of all the other calls. The more messages you leave, the clearer your message of wanting services gets heard...it's the only way that you can show that you are serious in wanting a call back.
You have to call at least twice a day everyday. "Please leave a message and I will return your call by the end of business today," is BS. Everyone says it, mostly to make you feel like you are getting somewhere. That message, however, is the Cable Guy of messages. You hang around waiting until close of business, you waste your day not doing anything that would prevent you from answering the phone, and the call doesn't happen. Again persistence pays off.
Some of these people just don't care. Sometimes they are just the person that answers the phone. They have no training outside of basic message taking. You have to call and know what you want, otherwise you call or email and get placed on a 10 month waiting list for something that you do not need, would never in a million years qualify for, or don't meet basic eligibility for.
You will have to break out the big guns. You will have to threaten to call supervisors. And sometimes the threat is enough, but most of the time you will have to call the supervisor, board or governing body of the department that you called.
You will have to fight. You will have to quote their own policies to them. "You cannot simply turn my child away on the phone, you have to come and evaluate him/her. It's the law. You cannot make a determination about someone you have never met." Sometimes they are still to stuck in their ways of shortcut to acknowledge that you are quoting from their own handbook and will have to report them to a government oversight agency.
You will cry. A. Lot. Sometimes you will cry because you are literally getting no where fast. Sometimes you will cry because you just had another 3 doors opened, but you simply cannot tell your child's story to another living person that day. Sometimes you will use your tears to get more contacts. Frustration, Happiness, Exhaustion, Manipulation...these are all tears that you will learn well.
Record everything. Write down everything. You would do well to always have a pen and post-it's with you. You will want to write down dates, times, names, questions asked, requirements given, a link to the information that they just given you, a follow up number (don't take an 800, get the line that they would have their family call on), a time frame for a return call. Keep it all in a notebook, keeping in mind that you will want to have all of this in page protectors, because paper is not water proof and you will cry over it at least once.
You will get told no much more often than you are told yes. Don't take it lying down. Ask why, what else can be done, can you just evaluate them, what if you just saw them for diagnostic purposes, who can you give me to call instead, what recommendations can you offer for someone in this situation? Sometimes simply asking those questions, you will change their minds.
Not everyone is qualified to see your child. Be up front about their diagnosis because the last thing that you want is someone who is not qualified to treat someone with your kids specific needs. Trust me it's not fun for anyone. Sometimes it will be tempting to leave out some of the truth...they will find out one way or another, you will spill the beans of they will observe it themselves, and then you will be at square 1 again.
Take free advice. As above, you are going to be told no, but one of the key things to ask is what recommendations can you offer. This is going to lend to you a plethora of free techniques based on what they have heard. Most of it will be things that you have heard over and over again, but there will be a few diamonds in the rough.
On the flipside of that coin...not every child with ASD is alike and therefore, not every technique suggested is going to work for your child. So try it, and if it doesn't work, move on. You are not a failure, you are just going to have to keep searching through your haystack to find out that the needle is indeed 3 stacks over.
Not every resource is as awesome as the person who provided it to you thinks that they are. Sometimes it's because that resource worked for them, sometimes it's because they just don't have anything that is relative to your child, and sometimes it's because they are everyone's resource and they are just tired. So when you find someone that truly helps you, thank them, try not to mis-use them, thank them, let them know how awesome they are, thank them, connect with them, and did I say thank them?
My hope for writing all of this down is that my journey can help someone else's become a little bit easier. So if you know someone that is going through this same or similar journey, I encourage you to share. I may seem very cynical, and while I feel that I have earned that right, I am only trying to be honest. I truly wish that someone would have shared what a roller coaster this journey was going to be, and mine is not even over yet.
I should start out this way, with a little back story first. And when I say little...I mean bare bones story...My son, Gunnar, is 6, he has ASD, and we have already been fighting 4 years to get a diagnosis for him. His 2nd Pediatrician and I had long suspected that he was somewhere on the spectrum, but there is a lot of hoops to go through to obtain a formal diagnosis. And, naively, I thought that since I had been fighting so hard to prevent him from slipping through the cracks that I was a pro...and I was wrong.
You have to call at least twice a day. If you don't you will get lost in the shuffle of all the other calls. The more messages you leave, the clearer your message of wanting services gets heard...it's the only way that you can show that you are serious in wanting a call back.
You have to call at least twice a day everyday. "Please leave a message and I will return your call by the end of business today," is BS. Everyone says it, mostly to make you feel like you are getting somewhere. That message, however, is the Cable Guy of messages. You hang around waiting until close of business, you waste your day not doing anything that would prevent you from answering the phone, and the call doesn't happen. Again persistence pays off.
Some of these people just don't care. Sometimes they are just the person that answers the phone. They have no training outside of basic message taking. You have to call and know what you want, otherwise you call or email and get placed on a 10 month waiting list for something that you do not need, would never in a million years qualify for, or don't meet basic eligibility for.
You will have to break out the big guns. You will have to threaten to call supervisors. And sometimes the threat is enough, but most of the time you will have to call the supervisor, board or governing body of the department that you called.
You will have to fight. You will have to quote their own policies to them. "You cannot simply turn my child away on the phone, you have to come and evaluate him/her. It's the law. You cannot make a determination about someone you have never met." Sometimes they are still to stuck in their ways of shortcut to acknowledge that you are quoting from their own handbook and will have to report them to a government oversight agency.
You will cry. A. Lot. Sometimes you will cry because you are literally getting no where fast. Sometimes you will cry because you just had another 3 doors opened, but you simply cannot tell your child's story to another living person that day. Sometimes you will use your tears to get more contacts. Frustration, Happiness, Exhaustion, Manipulation...these are all tears that you will learn well.
Record everything. Write down everything. You would do well to always have a pen and post-it's with you. You will want to write down dates, times, names, questions asked, requirements given, a link to the information that they just given you, a follow up number (don't take an 800, get the line that they would have their family call on), a time frame for a return call. Keep it all in a notebook, keeping in mind that you will want to have all of this in page protectors, because paper is not water proof and you will cry over it at least once.
You will get told no much more often than you are told yes. Don't take it lying down. Ask why, what else can be done, can you just evaluate them, what if you just saw them for diagnostic purposes, who can you give me to call instead, what recommendations can you offer for someone in this situation? Sometimes simply asking those questions, you will change their minds.
Not everyone is qualified to see your child. Be up front about their diagnosis because the last thing that you want is someone who is not qualified to treat someone with your kids specific needs. Trust me it's not fun for anyone. Sometimes it will be tempting to leave out some of the truth...they will find out one way or another, you will spill the beans of they will observe it themselves, and then you will be at square 1 again.
Take free advice. As above, you are going to be told no, but one of the key things to ask is what recommendations can you offer. This is going to lend to you a plethora of free techniques based on what they have heard. Most of it will be things that you have heard over and over again, but there will be a few diamonds in the rough.
On the flipside of that coin...not every child with ASD is alike and therefore, not every technique suggested is going to work for your child. So try it, and if it doesn't work, move on. You are not a failure, you are just going to have to keep searching through your haystack to find out that the needle is indeed 3 stacks over.
Not every resource is as awesome as the person who provided it to you thinks that they are. Sometimes it's because that resource worked for them, sometimes it's because they just don't have anything that is relative to your child, and sometimes it's because they are everyone's resource and they are just tired. So when you find someone that truly helps you, thank them, try not to mis-use them, thank them, let them know how awesome they are, thank them, connect with them, and did I say thank them?
My hope for writing all of this down is that my journey can help someone else's become a little bit easier. So if you know someone that is going through this same or similar journey, I encourage you to share. I may seem very cynical, and while I feel that I have earned that right, I am only trying to be honest. I truly wish that someone would have shared what a roller coaster this journey was going to be, and mine is not even over yet.
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