One thing that I do not do well with is ask for help. I have an amazing support group that cheers me on and has been offering me help for years that I have been to proud to take.
While Gunnar's life has not changed as of yet, there have been a vast world of opportunities opened to him. I have received a list of recommendations for his psychologist that should help ease some of his everyday struggles. I feel like doing this makes less time for me to focus on the other kids so I am not going to be too proud to ask for help with this.
So here is what I need help with...if you can donate your time...I love you for it...if you have suggestions that I can use to help make things easier...I love you for it...if you have resources or recommendations...I love you for it. Anything you can do to help us out would be of great help to make sure that we can get him on the path of healing as soon as possible...and not totally neglect the other kids.
Sleep Items: Since Gunnar doesn't sleep, and this is a common symptom of Autistic Children there have been suggestions. Weighted Blankets...uh...all the ones that I have looked at are like $300! If you can find one cheaper or know how to make one, and if so can help me make one (I am stitching challenged at the moment) Love Forever comes to mind. Laundry Baskets, for the time being Gunnar feels the most secure to sleep in one of these bad boys...thing is there is never 1 readily available.
Visual Aides : I need help finding/making pictures, cutting, laminating, and attaching Velcro.
Structuring his Day : Visual Aides to help him know what is expected, see what is coming next. I have found a ton of PDF files on the Internet...they all have great photos...but each one seems to be missing something that would be helpful to him.
Reward System : Ideas on something inexpensive? Do you guys have something that works? How can I make this visually appealing?
Consequences : Pretty much the same as above.
Don't Forgets : Steps to common daily activities (Potty, Brushing Teeth, Washing)
Meal Planning : So many of you have already offered to help with our meals. Thank you sooooo much! We do have allergies though...All Nuts (Peanuts and Tree Nuts) Eggs, Mango, Processed Bananas. Please don't go out of your way...even if you want to come use the stuff we have on hand, and our electricity, and our pots and pans...we have tons of kids to do the dishes.
Play Groups : Your house...our house...the playground...he needs to practice socialization skills. Just please be prepared with the fact that he doesn't always realize his size, he has the social skills of a 2 year old, he is working on not hitting or screaming.
Sensory Objects : Squish Balls. Stress Balls. Fidget Objects (things that keep his hands busy)...make them buy them? Which is better? Any suggestions?
Kelsey, I am getting with the intake Nurse and then I'll let you know what I need help with from you and your SPED Partners.
Thanks for all the encouraging words, support and help!
Sunday, December 9, 2012
Thursday, December 6, 2012
Golden Ticket
We have been patiently-ish waiting in line for 2 and a half years. We have been to countless doctors, been too numerous hospitals, too many clinics to count. We have had every battery of tests known to man performed. We have maxed out our insurance coverage. We have heard maybe's, definately's, I think's, I would consider's. We have lived in a system that has let our son slip further into the cracks. We have heard that he is abnormal, deaf, willful, retarded, faking. We have been accused of making him like this, making him pretend, accused of lying. We have been told that there is nothing wrong, it's all in our imagination.
Finally today, after the hard work of one clinical psychologist, that was reluctant to even test him because of all the other results that had pooled in, we finally have some answers. And the best part...they aren't guesses or maybe's...they are definates. They are going down in his medical records. Copy of this 11 page, 8 pt font, single spaced document is going to every single doctor that he has seen...and will ever see. We got told that it is not all in our heads, we aren't making it up, we aren't seeing things.
So we got the diagnosis today...it feels like we have been invited to this super secret party for the past few years. The thing about this party is...even if you know a guy that can get you in...if you don't have the address to the party...that guy does yo know good. And because this party moves around a lot...because it is so super exclusive...if you don't get the super secret text...you can't get in...and even if someone forwards you that text...it's the ticket man...that little tiny piece of paper is the key. Today we got our Golden Ticket.
Sadly, he is "labeled"...but he is labeled with a word that we've suspected for years. A label that people have been too scared to put on him because he didn't exhibit all the classic signs. Medicine has come a long way in the past 30 months though...and we are beginning to open up this world a little bit more. But this label will pave a new road for him. This label entitles him to services from the state. This label entitles him to a better level of coverage from insurance agencies.
We received a list of Recommendations from his psychologist today. One to get him Medicaid Coverage to supplement his existing coverage from our private insurance. This means that all of his services could potentially be covered 100%. This would be a huge burden lifted off of our shoulders. It's always been a struggle to get him services because of what insurance would cover and what we could afford to cover. This, however, is not an easy task to get accomplished. It is exhausting to go through all the forms and listen to the circles that you have to go in...one actually led me in a path that in the end I was speaking with the person that I called first.
We have to find a psychiatrist so that we can get him leveled out (hopefully not to medicated) so that he is not a danger to others or to himself. You don't even want to know the waitlist we got placed on for that.
We need to re-evaluate all of his current doctors to make sure that they have the specific skill set to deal with him adequately so that he can receive proper care.
We need to start looking for in home care for him and in home therapy.
We have a lot of things that we have to do...but first on my list is a hug.
Finally today, after the hard work of one clinical psychologist, that was reluctant to even test him because of all the other results that had pooled in, we finally have some answers. And the best part...they aren't guesses or maybe's...they are definates. They are going down in his medical records. Copy of this 11 page, 8 pt font, single spaced document is going to every single doctor that he has seen...and will ever see. We got told that it is not all in our heads, we aren't making it up, we aren't seeing things.
So we got the diagnosis today...it feels like we have been invited to this super secret party for the past few years. The thing about this party is...even if you know a guy that can get you in...if you don't have the address to the party...that guy does yo know good. And because this party moves around a lot...because it is so super exclusive...if you don't get the super secret text...you can't get in...and even if someone forwards you that text...it's the ticket man...that little tiny piece of paper is the key. Today we got our Golden Ticket.
Sadly, he is "labeled"...but he is labeled with a word that we've suspected for years. A label that people have been too scared to put on him because he didn't exhibit all the classic signs. Medicine has come a long way in the past 30 months though...and we are beginning to open up this world a little bit more. But this label will pave a new road for him. This label entitles him to services from the state. This label entitles him to a better level of coverage from insurance agencies.
We received a list of Recommendations from his psychologist today. One to get him Medicaid Coverage to supplement his existing coverage from our private insurance. This means that all of his services could potentially be covered 100%. This would be a huge burden lifted off of our shoulders. It's always been a struggle to get him services because of what insurance would cover and what we could afford to cover. This, however, is not an easy task to get accomplished. It is exhausting to go through all the forms and listen to the circles that you have to go in...one actually led me in a path that in the end I was speaking with the person that I called first.
We have to find a psychiatrist so that we can get him leveled out (hopefully not to medicated) so that he is not a danger to others or to himself. You don't even want to know the waitlist we got placed on for that.
We need to re-evaluate all of his current doctors to make sure that they have the specific skill set to deal with him adequately so that he can receive proper care.
We need to start looking for in home care for him and in home therapy.
We have a lot of things that we have to do...but first on my list is a hug.
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