I may not be able to afford this right away but eventually I will have a room like this in my store. I'm really excited about it. It's going to be awesome!
For those of you that don't remember, I'm going to be opening a store catering to blind and visually impaired people. Eventually, it will expand to include many disabilities.
Elena
Saturday, December 17, 2011
Friday, December 16, 2011
Local Resources
So one of my readers (I have readers! So exciting!) asked about local resources and things to expect with a blind infant. Instead of doing a personal email, I thought I'd post what I know so everyone can benefit. I will do two entries, one on resources and one on what to expect. (It's too much for one entry.)
For anyone who doesn't know or doesn't remember. I live in Orem, Utah. The resources I'm going to be listing are for my area. If you don't live in this area, contact local groups, probably starting with your local hospital or doctor if you don't know of any groups, to see what resources are near you. If you find some, I'd love to hear about them and post them so others can be helped. Those that do live in Utah, feel lucky. You are blessed to live in a state with good resources that many states don't have.
When you first find out your child is blind there is no doubt some major stuff going through your head. I don't remember there being an exact moment the doctor said Elena was blind, it was more a slow gathering of information, so it wasn't like a hit in the face. I am grateful for that. I do remember thinking "How am I going to care for this child? Not only am I a first time mom but I have no idea how to raise a blind child." I took some time to ponder my thoughts and then took in a deep breathe and said "Now tell me what I need to do." Not all people have this reaction. Elena's father had the "her life is ruined" philosophy. This isn't necessarily a bad thing. It's how he felt and he didn't know enough about the blind community to think differently. Now he has changed his thinking.
Anyway, if you don't already have medical insurance, the first thing you should do is look into getting Medicaid. If you're under the income limit, your child is almost guaranteed to get it because he/she is blind. Also, look into getting Social Security Income. Again, almost guaranteed since he/she is blind. I didn't find out about SSI until I was in real need of the money. The case worker said I should have applied when I first found out she was blind because I could have gotten the money starting from way back then. During your qualification interview, if you bring a form to the SSI office from your child's doctor stating that he/she is blind then it will shorten the waiting period before you are qualified. (I didn't have the note and only had MRI forms so I had to wait 2 or 3 months.) SSI money can be used to pay medical bills for your child, clothes, toys, even help with rent or utilities. (They will give you a handbook explaining everything it can be used for.) Medicaid is supposed to pay for "assisted technology" but I don't know yet what exactly that includes. In reading the description, it seems that it will pay for your child's canes. I will be ordering a new cane for Elena soon so I'll let you know how that works.
Anyway, once you have a diagnosis, the first thing you should do, after taking that moment for yourself, is call Kids on the Move (KOTM). Their office is in Orem. They have an Early Intervention program. They will send someone to your home to interact with your child and determine if he/she qualifies for services. Being blind, I'd say you're probably guaranteed to qualify. They do ask about your income. They charge on a sliding scale but most people don't have to pay. (They have a chart on their website.) After the evaluation, they will tell you what services your child qualifies for. At the beginning, Elena had Occupational therapy, Physical therapy, Vision therapy, Developmental therapy and I think there was one more but I can't remember. Since then she has also had Speech therapy and Behavior therapy. Each therapist will make goals with you that are personalized to your child's abilities. Every few months they will go over the goals and make new ones, if necessary. And here's the best part, they come to your house! It's so nice to have them come to you. It's like the old days of house calls. :) Don't let this list of therapists scare you. Depending on the needs of your child, these therapists could only be a temporary thing, like they were for Elena.
Although the Parent Infant Program (PIP) isn't part of KOTM, they do work with them. (PIP is part of the Utah School for Deaf and Blind.) This is where your Vision therapist will come from. This therapist is full of info so ask as many questions as you can think of. Elena had two Vision therapists. Her first one wasn't around for long, I think she moved, but she was good with Elena. Her next therapist was/is amazing! I love Pam Peck. She was my daughter's Vision therapist for two years. We would continue seeing her now except that my daughter has turned 3 so she gets new therapists who work through the school district. I don't think you can request certain therapists but you can always try cause Pam is great and was always willing to go the extra mile to help or find out any info I needed or wanted.
While we are on the subject of therapists, I want to mention Elena's physical therapist. Although KOTM offered a physical therapist, we were already going to someone else so we just stayed with the person we were with. His name is Ben Norton and anyone who has read my past blogs should recognize his name. He works in Orem. His building is right next to the KOTM building. He works at Intermountain Pediatric Rehabilitation. (Although I gave the website, here's the phone number so you don't have to search for it. 801-714-3505) Ben is SO patient and always happy. I don't know how he does it. For the first 6 months, AT LEAST, EVERY single appointment Elena would cry the whole appointment (she didn't like us making her sit up or other things she didn't want to do) but Ben was always quiet when he talked to her. He'd sing songs and use toys to help calm her and entertain her. And he always remembered us. I have a doc that never seems to know how I am or what's going on with my life but Ben is totally different. He'll greet us by name and even ask about how Elena and I are doing. (Like asking how my finals went or how my parents are doing.) I recommend highly him. Elena's Healthy U Medicaid pays for it.
Once you've started on that, find a Pediatric Endocrinologist.(Medicaid pays for it.) Some people might try to tell you a regular Endocrin is fine but it's not. Elena is seeing Dr. Carol Foster at the Utah Diabetes Center in Salt Lake (close to primary children's hospital). Despite the name, they do more than diabetes stuff. They have pediatric endocrinologists that are really nice and seem to really know their stuff. With ONH, comes hormone problems usually so getting the cortisol, thyroid and growth hormones checked is important. (Just so you know, having a thyroid condition is no big deal. I have a thyroid condition, as does my mom, and I just have to take 1 pill a day and they are cheap, although Medicaid would pay for it if i still had Medicaid.) Your Endocrinologist will do blood tests every 6 months to a year, depending on test results. It's smart to continue testing throughout your child's life because they can develop problems even if they don't have any now. If your child's veins are small or they move around a lot while doing blood test, I'd suggest asking for the IV Team (I think that's what they are called). This is a small team of people that only do IV's and blood tests so they are very good at it. It took a couple times of being poked a half dozen times before someone told me about them. If you do ask for the IV team, they will send you to Primary Children's Hospital (it's only 1 or 2 streets over) because that's where the team is.
Sleep problems are also a side affect of ONH so keep an eye on your child's sleeping patterns. I haven't had many major sleeping issues with Elena until recently. I am currently looking for a Sleep Specialist with experience with blind children. If/when I find one I will let yall know. If your child has some light perception you might not have this problem. Since Elena doesn't see anything she doesn't have light to tell her body it's time to sleep or wake so her system is all out of whack. I have been told using Melatonin is helpful.
You will also need to get an O&M (Orientation and Mobility) therapist. Your Vision therapist can help with that. I would give you the name of Elena's but he wasn't very good and she has a new one now that she is with the school district. Her new one is Jalayne Engberg. An O&M teaches your child to use a cane and, when he/she gets older, how to travel independently, like crossing streets. Although you may think, or be told, that your 1 year old is too young for a cane, especially if he/she can't walk yet, don't listen. Just like with braille and textures, it's best to start them young. You can get a free cane from the National Federation of the Blind. Although I don't like the tip, it's a good starter. (Check out my entry on toddler canes.) Your O&M can also get you a cane, although you won't be using an O&M until your child can walk. (Elena was 2 before she walked independently.)
The School for the Deaf and Blind has a playgroup for children 18 months to 3 years old. You must have current immunizations or a doctors exemption. As far as I know, Pam Peck is still running it. The Orem group meets at the school for blind. It's a trailer behind Westmore Elementary right off Main ST. and 1100 South. It meets Mondays at 10:30am for about an hour. Although this info is current, they do change the day and time of the playgroup sometimes so ask your vision therapist if you need more/updated info. I do not know where the other two groups meet but I believe they are south, around Springville. I will find out and let yall know.
AGE 3
Once your child turns 3, he/she will start doing things with the school district's therapists. Your Vision therapist and KOTM will help with the transition. Elena's current Vision therapists are Donna Neibaur and Melanie (I forgot her last name). She has a braille lesson with them before pre-school. She also has an O&M who works with her at school. Once a month, she has an O&M field trip with other vision students from the area. Now that she's in school, all her therapy takes place while at school. She does still see her physical therapist, although not as often as she used to.
Since Elena is only 3, I can't help much on resources or what to expect after pre-school. I'm learning as I go and will post anything I do learn. (Soon, I will post an entry on my opinion of local blind and district pre-k.) I will say this though, just because your child will be seeing therapists and getting braille instruction don't think your job is done. You still need to work with your child at home. Your therapists will be happy to give you exercises to work on at home with your child and there are places that give out free or cheap braille books (Seedlings is cheap.) Learn braille yourself so you can help your child as he/she gets older. A great tool is "Just Enough to Know Better". I don't remember how but I got it free. Ask your Vision therapist. They might be able to get it for you free. Your vision therapist can get you a brailler, on loan, and show you how to use it so you can make braille labels for books and things. Have your child experiences all kinds of textures. Just get involved.
For anyone who doesn't know or doesn't remember. I live in Orem, Utah. The resources I'm going to be listing are for my area. If you don't live in this area, contact local groups, probably starting with your local hospital or doctor if you don't know of any groups, to see what resources are near you. If you find some, I'd love to hear about them and post them so others can be helped. Those that do live in Utah, feel lucky. You are blessed to live in a state with good resources that many states don't have.
When you first find out your child is blind there is no doubt some major stuff going through your head. I don't remember there being an exact moment the doctor said Elena was blind, it was more a slow gathering of information, so it wasn't like a hit in the face. I am grateful for that. I do remember thinking "How am I going to care for this child? Not only am I a first time mom but I have no idea how to raise a blind child." I took some time to ponder my thoughts and then took in a deep breathe and said "Now tell me what I need to do." Not all people have this reaction. Elena's father had the "her life is ruined" philosophy. This isn't necessarily a bad thing. It's how he felt and he didn't know enough about the blind community to think differently. Now he has changed his thinking.
Anyway, if you don't already have medical insurance, the first thing you should do is look into getting Medicaid. If you're under the income limit, your child is almost guaranteed to get it because he/she is blind. Also, look into getting Social Security Income. Again, almost guaranteed since he/she is blind. I didn't find out about SSI until I was in real need of the money. The case worker said I should have applied when I first found out she was blind because I could have gotten the money starting from way back then. During your qualification interview, if you bring a form to the SSI office from your child's doctor stating that he/she is blind then it will shorten the waiting period before you are qualified. (I didn't have the note and only had MRI forms so I had to wait 2 or 3 months.) SSI money can be used to pay medical bills for your child, clothes, toys, even help with rent or utilities. (They will give you a handbook explaining everything it can be used for.) Medicaid is supposed to pay for "assisted technology" but I don't know yet what exactly that includes. In reading the description, it seems that it will pay for your child's canes. I will be ordering a new cane for Elena soon so I'll let you know how that works.
Anyway, once you have a diagnosis, the first thing you should do, after taking that moment for yourself, is call Kids on the Move (KOTM). Their office is in Orem. They have an Early Intervention program. They will send someone to your home to interact with your child and determine if he/she qualifies for services. Being blind, I'd say you're probably guaranteed to qualify. They do ask about your income. They charge on a sliding scale but most people don't have to pay. (They have a chart on their website.) After the evaluation, they will tell you what services your child qualifies for. At the beginning, Elena had Occupational therapy, Physical therapy, Vision therapy, Developmental therapy and I think there was one more but I can't remember. Since then she has also had Speech therapy and Behavior therapy. Each therapist will make goals with you that are personalized to your child's abilities. Every few months they will go over the goals and make new ones, if necessary. And here's the best part, they come to your house! It's so nice to have them come to you. It's like the old days of house calls. :) Don't let this list of therapists scare you. Depending on the needs of your child, these therapists could only be a temporary thing, like they were for Elena.
Although the Parent Infant Program (PIP) isn't part of KOTM, they do work with them. (PIP is part of the Utah School for Deaf and Blind.) This is where your Vision therapist will come from. This therapist is full of info so ask as many questions as you can think of. Elena had two Vision therapists. Her first one wasn't around for long, I think she moved, but she was good with Elena. Her next therapist was/is amazing! I love Pam Peck. She was my daughter's Vision therapist for two years. We would continue seeing her now except that my daughter has turned 3 so she gets new therapists who work through the school district. I don't think you can request certain therapists but you can always try cause Pam is great and was always willing to go the extra mile to help or find out any info I needed or wanted.
While we are on the subject of therapists, I want to mention Elena's physical therapist. Although KOTM offered a physical therapist, we were already going to someone else so we just stayed with the person we were with. His name is Ben Norton and anyone who has read my past blogs should recognize his name. He works in Orem. His building is right next to the KOTM building. He works at Intermountain Pediatric Rehabilitation. (Although I gave the website, here's the phone number so you don't have to search for it. 801-714-3505) Ben is SO patient and always happy. I don't know how he does it. For the first 6 months, AT LEAST, EVERY single appointment Elena would cry the whole appointment (she didn't like us making her sit up or other things she didn't want to do) but Ben was always quiet when he talked to her. He'd sing songs and use toys to help calm her and entertain her. And he always remembered us. I have a doc that never seems to know how I am or what's going on with my life but Ben is totally different. He'll greet us by name and even ask about how Elena and I are doing. (Like asking how my finals went or how my parents are doing.) I recommend highly him. Elena's Healthy U Medicaid pays for it.
Once you've started on that, find a Pediatric Endocrinologist.(Medicaid pays for it.) Some people might try to tell you a regular Endocrin is fine but it's not. Elena is seeing Dr. Carol Foster at the Utah Diabetes Center in Salt Lake (close to primary children's hospital). Despite the name, they do more than diabetes stuff. They have pediatric endocrinologists that are really nice and seem to really know their stuff. With ONH, comes hormone problems usually so getting the cortisol, thyroid and growth hormones checked is important. (Just so you know, having a thyroid condition is no big deal. I have a thyroid condition, as does my mom, and I just have to take 1 pill a day and they are cheap, although Medicaid would pay for it if i still had Medicaid.) Your Endocrinologist will do blood tests every 6 months to a year, depending on test results. It's smart to continue testing throughout your child's life because they can develop problems even if they don't have any now. If your child's veins are small or they move around a lot while doing blood test, I'd suggest asking for the IV Team (I think that's what they are called). This is a small team of people that only do IV's and blood tests so they are very good at it. It took a couple times of being poked a half dozen times before someone told me about them. If you do ask for the IV team, they will send you to Primary Children's Hospital (it's only 1 or 2 streets over) because that's where the team is.
Sleep problems are also a side affect of ONH so keep an eye on your child's sleeping patterns. I haven't had many major sleeping issues with Elena until recently. I am currently looking for a Sleep Specialist with experience with blind children. If/when I find one I will let yall know. If your child has some light perception you might not have this problem. Since Elena doesn't see anything she doesn't have light to tell her body it's time to sleep or wake so her system is all out of whack. I have been told using Melatonin is helpful.
You will also need to get an O&M (Orientation and Mobility) therapist. Your Vision therapist can help with that. I would give you the name of Elena's but he wasn't very good and she has a new one now that she is with the school district. Her new one is Jalayne Engberg. An O&M teaches your child to use a cane and, when he/she gets older, how to travel independently, like crossing streets. Although you may think, or be told, that your 1 year old is too young for a cane, especially if he/she can't walk yet, don't listen. Just like with braille and textures, it's best to start them young. You can get a free cane from the National Federation of the Blind. Although I don't like the tip, it's a good starter. (Check out my entry on toddler canes.) Your O&M can also get you a cane, although you won't be using an O&M until your child can walk. (Elena was 2 before she walked independently.)
The School for the Deaf and Blind has a playgroup for children 18 months to 3 years old. You must have current immunizations or a doctors exemption. As far as I know, Pam Peck is still running it. The Orem group meets at the school for blind. It's a trailer behind Westmore Elementary right off Main ST. and 1100 South. It meets Mondays at 10:30am for about an hour. Although this info is current, they do change the day and time of the playgroup sometimes so ask your vision therapist if you need more/updated info. I do not know where the other two groups meet but I believe they are south, around Springville. I will find out and let yall know.
AGE 3
Once your child turns 3, he/she will start doing things with the school district's therapists. Your Vision therapist and KOTM will help with the transition. Elena's current Vision therapists are Donna Neibaur and Melanie (I forgot her last name). She has a braille lesson with them before pre-school. She also has an O&M who works with her at school. Once a month, she has an O&M field trip with other vision students from the area. Now that she's in school, all her therapy takes place while at school. She does still see her physical therapist, although not as often as she used to.
Since Elena is only 3, I can't help much on resources or what to expect after pre-school. I'm learning as I go and will post anything I do learn. (Soon, I will post an entry on my opinion of local blind and district pre-k.) I will say this though, just because your child will be seeing therapists and getting braille instruction don't think your job is done. You still need to work with your child at home. Your therapists will be happy to give you exercises to work on at home with your child and there are places that give out free or cheap braille books (Seedlings is cheap.) Learn braille yourself so you can help your child as he/she gets older. A great tool is "Just Enough to Know Better". I don't remember how but I got it free. Ask your Vision therapist. They might be able to get it for you free. Your vision therapist can get you a brailler, on loan, and show you how to use it so you can make braille labels for books and things. Have your child experiences all kinds of textures. Just get involved.
Thursday, December 15, 2011
Endocrinology results
So I called Elena's Endocrinologist today because I hadn't heard back her test results from back in August. Turns out, since the blood was drawn during her MRI the results were sent to the Neurologist instead of the Endocrinologist. I figured that had happened. Anyway, I have the results now.
Thyroid - middle normal
Growth - low normal
Cortisol - middle normal
That's good to hear. I'm a little concerned about the growth but I'm just glad the rest is ok. I'm just waiting for the day that she'll need thyroid meds. I'd be surprised if she never needs it. Not only is she more likely to get it because of having ONH but it also runs in the women of my family. I have have it. My mom has it and her mom had it. I don't know any further back than that but am told it does go back further.
She has another appointment in May to re-test everything. If her growth hormones are the same or lower they may want to do hormone treatments. I'm not sure how I feel about that. I want what's best for her but I also don't want to cause problems if the hormones do more to hurt than help or something bad happens. They said they wanted to do a xray at age 4 to check out her bones so I think I'll wait til then, if they say she needs it, just to be safe. The nurse I spoke to gave me the name of 3 growth hormones that they might use and that are covered by my insurance. They are Nutropin, Genotropin, and Nordatropin. (Hope I spelled those right.) I'm going to go research them. If anyone knows anything about these drugs or about using growth hormones I'd love to hear from you.
Thyroid - middle normal
Growth - low normal
Cortisol - middle normal
That's good to hear. I'm a little concerned about the growth but I'm just glad the rest is ok. I'm just waiting for the day that she'll need thyroid meds. I'd be surprised if she never needs it. Not only is she more likely to get it because of having ONH but it also runs in the women of my family. I have have it. My mom has it and her mom had it. I don't know any further back than that but am told it does go back further.
She has another appointment in May to re-test everything. If her growth hormones are the same or lower they may want to do hormone treatments. I'm not sure how I feel about that. I want what's best for her but I also don't want to cause problems if the hormones do more to hurt than help or something bad happens. They said they wanted to do a xray at age 4 to check out her bones so I think I'll wait til then, if they say she needs it, just to be safe. The nurse I spoke to gave me the name of 3 growth hormones that they might use and that are covered by my insurance. They are Nutropin, Genotropin, and Nordatropin. (Hope I spelled those right.) I'm going to go research them. If anyone knows anything about these drugs or about using growth hormones I'd love to hear from you.
Saturday, December 10, 2011
Optic Nerve Hypoplasia Interview
I found this video in which a doctor is being interviewed about Optic Nerve Hypoplasia. Although I already knew much of what he said, I found it interesting and did learn some new things. For people new to ONH, I highly recommend listening to this. Actually, I recommend this to everyone.
http://blindhow.com/posts/295#content
Dr. Borchert discusses Optic Nerve Hypoplasia, his current research and answers questions from a telephone audience.
Telephone conference is moderated by Dr. Bill Takeshita. Dr. Bill is Chief of Optometric Services at the Center for the Partially Sighted & the Consulting Director of Low Vision Education at the Braille Institute of America.
http://blindhow.com/posts/295#content
Dr. Borchert discusses Optic Nerve Hypoplasia, his current research and answers questions from a telephone audience.
Telephone conference is moderated by Dr. Bill Takeshita. Dr. Bill is Chief of Optometric Services at the Center for the Partially Sighted & the Consulting Director of Low Vision Education at the Braille Institute of America.
Thursday, December 8, 2011
Braille shirts
I have unofficially started my new TRADEMARKED t-shirt line called "Rock the Dots". I made 2 shirts for Elena. I started thinking I'd do puff paint but then saw the iron on rhinestones and thought it would be cutter. And it is! I'm so proud of myself. It took WAY longer than I thought it would to arrange the rhinestones and, sadly, a couple moved and messed up the spelling but they look super cute. Some of the rhinestones don't look very secure either so I'm hoping they will stay on. I'll see tomorrow after Elena wears her new shirt to school. I'm so excited!!!!!! Can't ya tell? lol
The pink one says "princess elena" and the black one says "rock the dots". There is no capital letter sign but I think it still looks good. I saw a cute skull and cross-bones with a bow made from silver rhinestones that I think I'll use in my next shirt. It would totally go with the "rock the dots" theme.
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