For reimbursement from the Family Involvement Fund, that is. The group of families that have kids with 22q13 Deletion Syndrome has a biannual international conference in the even numbered years. We went to that conference in Greenwood, SC last summer. This May a parent near Toledo, OH decided to organize a regional family retreat. We really wanted to go but it seemed a little expensive for a weekend. Mileage (no decent flights from Indy), lodging, and meals all added up just for a weekend.
Then I remembered the Family Involvement Fund. I found out about it last fall. I knew they would cover a conference like last summer’s but I wasn’t sure about a regional family retreat. Unfortunately, we couldn’t get last summer’s conference covered because they operate on a fiscal year and it had already ended by the time I discovered the fund. I did apply for a low muscle tone course that I attended in January and finally received the reimbursement for that course a few weeks ago. That check is actually what reminded me about the fund. I went online, filled out a very easy application, and within 10 days received an approval email for the family retreat next month. We’ll submit receipts for lodging. The mileage and meals are covered at a flat reimbursement rate per mile and per meal respectively. The whole shebang is covered! How exciting! There is a family that lives south of us with a newly diagnosed son close in age to Kaia and I am really hoping they can attend.
So, the next time an educational or support opportunity comes your way regarding your child with special needs, check into the Family Involvement Fund (if you live in Indiana) or see if your state has a similar program. It’s an amazing resource.
Here's a little more info copied directly from the link above:
What is the Family Involvement Fund?
The Family Involvement Fund (FIF) is a reimbursement fund that supports family members of children with disabilities to learn more about their child’s disability and the systems that provide services.
Families may choose to attend conferences, conventions, workshops, public forums or hearings, task force meetings, or other similar activities. Families may also choose to access training and information through online workshops, teleconferences, or webcasts.
In addition, the FIF provides reimbursement for approved purchase of print materials (books, manuals), or other media such as CDs/DVDs, and videos.
Separate funding is also available within the FIF for parents who are asked to participate officially as members on their Local Planning and Coordinating Council (LPCC), its committees, and sponsored activities.
How much is Available from the Family Involvement Fund?
The Family Involvement Fund will reimburse approved applicants up to $250 (for an individual) or $500 (for more than one adult) for the grant year. Awards are per individual or family, not per child. Amounts are subject to change.
What the Family Involvement Fund Does Not Cover
The FIF does not reimburse for therapies or other developmental services, training for specific therapy modalities or academic course work, the purchase of developmental toys, materials, equipment, etc. for specific use by a child or family, and will not reimburse enrolled providers for expenses related to attendance at a training required for credentialing purposes. This fund is not intended for professionals or non-family members to attend trainings on a family’s behalf.
Who Can Apply to the Family Involvement Fund?
The Family Involvement Fund is available to families of children with disabilities, ages birth –through 21 years of age. Family includes parents, siblings, grandparents, and other extended family members, foster parents, legal guardians, and educational surrogate parents.
How do I Apply for the Family Involvement Fund?
You may apply online or print an application from the Family-to-Family website at http://www.inf2f.org/. You may also call or email to request an application form. (See contact information below)
Payer of Last Resort
The Family Involvement Fund is considered a “payer of last resort.” Families are encouraged to seek financial support from other sources before applying to the FIF. Please consider the following:1) Local community service organizations such as Lions Club, Kiwanis, etc.2) The Indiana Governor’s Council for People with Disabilities, Consumer Investment Fund. For information, call 317-232-7700, or go to http://www.in.gov/gpcpd.3) Check conference materials for information on available scholarships.4) Check with local/state disability-related organizations and support groups for information on available scholarships.
Guidelines, Requirements, and Limitations
Attending a Conference
• Should the number of applications for any one conference jeopardize the total funding allotment for families, a cap or other reimbursement restrictions may be instituted.
• Families requesting reimbursement must provide verification of conference attendance with their paperwork.
• Mileage is reimbursed at $.44/mile for 1-500 miles; $.22/mile for 501-3,000 miles; $.0 for over 3,000 miles.
• Reimbursement for meals is a flat rate based on Indiana University guidelines.
Print Materials and Electronic Media• Families are encouraged to first contact our library, the Center for Disability Information & Referral (CeDIR), to determine if the needed materials are available for checkout. (See contact information below)
• Print and electronic materials should be related to a family’s need to understand their child’s disability or special needs and/or the systems that provide services, such as early intervention or special education.
• FIF cannot reimburse for materials purchased for individual child-use such as flash cards, children’s books or videos/DVDs, toys, etc.
Timelines and Procedures
• Applications should be submitted at least 30 days prior to the date of the event.
• Upon approval, you will receive a letter and the forms you will need to fill out and return after the event.
• The FIF will reimburse actual expenses and requires you to submit original receipts.
• If your application is determined to be outside the use of this fund, you will receive a letter of explanation.
Monday, April 27, 2009
Monday, April 20, 2009
Unnecessary medical procedures?
Antibiotics, podiatric surgery, evt’s, oh my! (to the tune of Lions and tigers and bears, oh my!, From the Wizard of Oz)
A mass. That’s what they saw in Kaia’s kidney today. In her good kidney. Yeah, it was a little scary. But I really wasn’t surprised. I was prepared to hear something like that. Don’t ask me why. I just get these feelings about things. Right now the doc doesn’t know what the mass is. It’s too difficult, daresay impossible, to discern from an ultrasound (the procedure Kaia had today) the difference between blood or a mass. It may be a hemorrhagic cyst or a neoplasm (type of cancer). I really haven’t thought that far ahead yet and I don’t want to. It may be nothing and hopefully that’s the case.
We are supposed to go back within the week for her to have a renal CT. They would’ve fitted Kaia in for a CT this afternoon but couldn’t do it until 4pm. She had to wait until then because the eating restrictions (nothing po 6 hours prior) due to the procedure requiring sedation. Because we found out that she was going to have to undergo sedation we decided to revisit the subject of evt’s (ear vent tubes) – something we’ve been struggling with making a decision about for a few months now. We thought, why not try to include evt’s and an ABR (auditory brainstem response) hearing test while she was under and do it all at once?
I actually started the following blog entry about this topic a couple months ago but never finished it or got around to posting it. Today I will. I started off wanting advice. This is what I wrote: Gentle reader, I’d like your advice. Granted, I should say right from the start that I may not heed any of it. But I am interested in your opinions. Lord knows I get enough from dr’s and therapists. Might as well throw in anonymous internet blog readers, too. The more the merrier.
Here’s the situation and background info: Kaia’s developmental pediatrician suggested that she have a hearing evaluation last November to rule out any hearing loss. Hearing loss is not common with her syndrome, but apparently it is routine to evaluate with any speech delay and craniofacial abnormalities – even though we know that she will most likely have severely delayed speech (maximum of 50 words) to absent speech associated with her syndrome. So we scheduled a hearing test.
The day before the evaluation Kaia came down with a cold. Silly me, I didn’t think anything of it. I thought, a little cold shouldn’t affect hearing. Obviously I was wrong. Since it’s all connected, nasal/sinus congestion can cause fluid in the ears, which in turn can affect hearing. They did a tympanogram which indicated fluid in the ears and then they performed the most unscientific, most subjective hearing eval I’ve ever had the opportunity to witness. Kaia sat on my lap in the soundproof booth. Paul sat in front of her to one side. We were in charge of directing her to look to the front of the booth at a lighted duck when it flashed. There was a speaker on either side of her just behind her. The technician would send souds through a speaker and a little toy would light up in it. The technician started by utilizing the speaker to our left. Kaia quickly learned to turn her head, even before the sound, to the left to see the toy light up. I can’t even tell you how bogus the whole exam seemed. Anyway, the very unscientific result showed that Kaia had a mild hearing loss of about 20 decibels.
The dr advised us to wait a month after her cold and reschedule her for another exam. If the fluid persisted us, he warned us that he would be advising surgery to place evt’s. Wait a second, did he just say surgery? On her ears? When there have been no problems, no ear infections, and we know that she can hear us just fine? Yep, surgery. His rationale was that we wouldn’t want to burden our already challenged daughter with the added challenge of a hearing loss equivalent to plugging both of your ears b/c of the persistent fluid.
At Kaia’s 18 month checkup we asked for her regular pediatrician’s take. Now this is a guy whose judgment I trust. This is the same guy who made the immediate call over the phone that Kaia most absolutely did not need a feeding tube following a failed swallow study. So he’s got my respect. He didn’t think she needed surgery He argued that since no one could guarantee advanced speech develpment with this surgery that it was an unnecessary medical procedure. You go to a surgeon, they want to perform surgery. It’s what they do, he said. What’s the benefit to risk ratio? Here, can the surgeon guarantee improved speech? We know with her syndrome speech delay is not due to hearing deficit but rather brain protein structures. Why subject Kaia to a general anesthesia and surgery when the reward isn’t worth the risks (in his opinion)?
We went back after a month for another test. The result? Flat typanograms, indicating fluid again or still the same fluid from before. The good news: Kaia’s only had one ear infection ever. And that one cleared on its own, no antibiotics. Apparently up to 60% of ear infections are viral and do clear on their own. Kaia’s ped said that they give atb’s out like candy because most parents want them and kids need them to get back into daycares. But I digress. Back to the evt’s: the ENT doc still insisted that evt’s were the way to go for Kaia in spite of her healthy ears because of the now “persistent” ear fluid and her “craniofacial abnormality” (boy was I getting sick of hearing that term).
We decided to wait. Fast forward to present day. I found out we could schedule a hearing eval (sort of a second opinion with no insurance copays) through first steps and we finally got in last week. Results: flat tympanograms again. Still fluid. But still no ear infections. I asked the audiologist to perform the hearing eval anyway. Same exact subjective test, same results, but even more inconclusive. She suggested an ABR hearing test under sedation for objective, accurate results. But, here’s the catch: we couldn’t get the ABR until the fluid cleared (now looking more and more unlikely to happen on its own) or until we chose to do evt’s (they would do both the evts and the ABR at the same time).
Everyone I talk to about this - other moms, the audiologist, everyone - advises that we do the evt’s. For some reason, I’m still not convinced. I think it’s because I’m so hesitant about any medical interventions. I don’t trust that doctors are really putting my daughter’s interests first. I think they are fascinated by her case, follow the current popular trends in medicine like sheep – with no regard for patient individuality, and let’s face it, want to make money and prove their necessity in society.
I’ve since heard of one other alternative to evt’s: some sort of chiropractic massage to relieve the fluid. I haven’t looked into this at all. I was really just hoping the fluid would drain on its own and the issue would resolve.
Today made the decision super easy for me. If Kaia had to be sedated for the renal CT anyway, why not do all of it at once? Get it over this week before I change my mind. You’d think the hospital and doctors would jump at the chance to get this done, right? Incredibly naive thinking on my part. We spent literally the whole day at the hospital today trying to get all the departments involved to coordinate to get this together. I was given the run around, treated downright rude - like a pain in the ass interfering mother who had no right questioning or getting involved in the scheduling process. They could not have cared less that by not putting the effort to coordinate these procedures they would be putting Kaia through the risks associated with anesthesia twice. They did not care a whit. Really makes me feel even more confident in these people that they truly have my daughter’s best interests at heart. I don’t have the time or energy to recount all the ridiculous things I was told and contradictions.
The current status: We’ll either do the CT by itself later this week and may or may not do the evts and abr together at a later date, or the hospital will get their shit together, do the right thing by my daughter, and coordinate so that she can do them all together on Thursday. I’ll keep you posted. Forgive the profanities: I’m just a little pissed right now. It’s been a long day.
A mass. That’s what they saw in Kaia’s kidney today. In her good kidney. Yeah, it was a little scary. But I really wasn’t surprised. I was prepared to hear something like that. Don’t ask me why. I just get these feelings about things. Right now the doc doesn’t know what the mass is. It’s too difficult, daresay impossible, to discern from an ultrasound (the procedure Kaia had today) the difference between blood or a mass. It may be a hemorrhagic cyst or a neoplasm (type of cancer). I really haven’t thought that far ahead yet and I don’t want to. It may be nothing and hopefully that’s the case.
We are supposed to go back within the week for her to have a renal CT. They would’ve fitted Kaia in for a CT this afternoon but couldn’t do it until 4pm. She had to wait until then because the eating restrictions (nothing po 6 hours prior) due to the procedure requiring sedation. Because we found out that she was going to have to undergo sedation we decided to revisit the subject of evt’s (ear vent tubes) – something we’ve been struggling with making a decision about for a few months now. We thought, why not try to include evt’s and an ABR (auditory brainstem response) hearing test while she was under and do it all at once?
I actually started the following blog entry about this topic a couple months ago but never finished it or got around to posting it. Today I will. I started off wanting advice. This is what I wrote: Gentle reader, I’d like your advice. Granted, I should say right from the start that I may not heed any of it. But I am interested in your opinions. Lord knows I get enough from dr’s and therapists. Might as well throw in anonymous internet blog readers, too. The more the merrier.
Here’s the situation and background info: Kaia’s developmental pediatrician suggested that she have a hearing evaluation last November to rule out any hearing loss. Hearing loss is not common with her syndrome, but apparently it is routine to evaluate with any speech delay and craniofacial abnormalities – even though we know that she will most likely have severely delayed speech (maximum of 50 words) to absent speech associated with her syndrome. So we scheduled a hearing test.
The day before the evaluation Kaia came down with a cold. Silly me, I didn’t think anything of it. I thought, a little cold shouldn’t affect hearing. Obviously I was wrong. Since it’s all connected, nasal/sinus congestion can cause fluid in the ears, which in turn can affect hearing. They did a tympanogram which indicated fluid in the ears and then they performed the most unscientific, most subjective hearing eval I’ve ever had the opportunity to witness. Kaia sat on my lap in the soundproof booth. Paul sat in front of her to one side. We were in charge of directing her to look to the front of the booth at a lighted duck when it flashed. There was a speaker on either side of her just behind her. The technician would send souds through a speaker and a little toy would light up in it. The technician started by utilizing the speaker to our left. Kaia quickly learned to turn her head, even before the sound, to the left to see the toy light up. I can’t even tell you how bogus the whole exam seemed. Anyway, the very unscientific result showed that Kaia had a mild hearing loss of about 20 decibels.
The dr advised us to wait a month after her cold and reschedule her for another exam. If the fluid persisted us, he warned us that he would be advising surgery to place evt’s. Wait a second, did he just say surgery? On her ears? When there have been no problems, no ear infections, and we know that she can hear us just fine? Yep, surgery. His rationale was that we wouldn’t want to burden our already challenged daughter with the added challenge of a hearing loss equivalent to plugging both of your ears b/c of the persistent fluid.
At Kaia’s 18 month checkup we asked for her regular pediatrician’s take. Now this is a guy whose judgment I trust. This is the same guy who made the immediate call over the phone that Kaia most absolutely did not need a feeding tube following a failed swallow study. So he’s got my respect. He didn’t think she needed surgery He argued that since no one could guarantee advanced speech develpment with this surgery that it was an unnecessary medical procedure. You go to a surgeon, they want to perform surgery. It’s what they do, he said. What’s the benefit to risk ratio? Here, can the surgeon guarantee improved speech? We know with her syndrome speech delay is not due to hearing deficit but rather brain protein structures. Why subject Kaia to a general anesthesia and surgery when the reward isn’t worth the risks (in his opinion)?
We went back after a month for another test. The result? Flat typanograms, indicating fluid again or still the same fluid from before. The good news: Kaia’s only had one ear infection ever. And that one cleared on its own, no antibiotics. Apparently up to 60% of ear infections are viral and do clear on their own. Kaia’s ped said that they give atb’s out like candy because most parents want them and kids need them to get back into daycares. But I digress. Back to the evt’s: the ENT doc still insisted that evt’s were the way to go for Kaia in spite of her healthy ears because of the now “persistent” ear fluid and her “craniofacial abnormality” (boy was I getting sick of hearing that term).
We decided to wait. Fast forward to present day. I found out we could schedule a hearing eval (sort of a second opinion with no insurance copays) through first steps and we finally got in last week. Results: flat tympanograms again. Still fluid. But still no ear infections. I asked the audiologist to perform the hearing eval anyway. Same exact subjective test, same results, but even more inconclusive. She suggested an ABR hearing test under sedation for objective, accurate results. But, here’s the catch: we couldn’t get the ABR until the fluid cleared (now looking more and more unlikely to happen on its own) or until we chose to do evt’s (they would do both the evts and the ABR at the same time).
Everyone I talk to about this - other moms, the audiologist, everyone - advises that we do the evt’s. For some reason, I’m still not convinced. I think it’s because I’m so hesitant about any medical interventions. I don’t trust that doctors are really putting my daughter’s interests first. I think they are fascinated by her case, follow the current popular trends in medicine like sheep – with no regard for patient individuality, and let’s face it, want to make money and prove their necessity in society.
I’ve since heard of one other alternative to evt’s: some sort of chiropractic massage to relieve the fluid. I haven’t looked into this at all. I was really just hoping the fluid would drain on its own and the issue would resolve.
Today made the decision super easy for me. If Kaia had to be sedated for the renal CT anyway, why not do all of it at once? Get it over this week before I change my mind. You’d think the hospital and doctors would jump at the chance to get this done, right? Incredibly naive thinking on my part. We spent literally the whole day at the hospital today trying to get all the departments involved to coordinate to get this together. I was given the run around, treated downright rude - like a pain in the ass interfering mother who had no right questioning or getting involved in the scheduling process. They could not have cared less that by not putting the effort to coordinate these procedures they would be putting Kaia through the risks associated with anesthesia twice. They did not care a whit. Really makes me feel even more confident in these people that they truly have my daughter’s best interests at heart. I don’t have the time or energy to recount all the ridiculous things I was told and contradictions.
The current status: We’ll either do the CT by itself later this week and may or may not do the evts and abr together at a later date, or the hospital will get their shit together, do the right thing by my daughter, and coordinate so that she can do them all together on Thursday. I’ll keep you posted. Forgive the profanities: I’m just a little pissed right now. It’s been a long day.
Tuesday, April 14, 2009
Ding dong, The taxes are done!
I wish I had something more interesting to report but I’ve spent the last weekend holed up in our office doing the taxes. Yes, I procrastinated a bit this year. I actually used to sort of enjoy doing the taxes. We have some complicating factors which I found great satisfaction in figuring out all the little ins and outs and crazy little irs rules. Now, it’s just time spent away from my little girl and husband.
Kaia’s Grandma and Grandpa came to town for the weekend to help Paul out while I was holed up in said office and it’s always so great to have them around. The best part is how much Grandma absolutely adores Kaia and all the nitty gritty details of taking care of her – changing her diapers and even the messy, frustrating business of feeding her.
Bonus of having Grandma and Grandpa here: Paul and I got to go on a couple dates. I surprised him Friday night with a couples massage. He had never had a professional massage. It had been years since I had. We were both all giggly and excited to do something so different. I felt a little extravagant about spending so much money on a hour’s worth of luxury. I felt much better about it after finishing the taxes and discovering that uncle sam decided to reward us this year with a nice little refund.
Let’s see, what else? Kaia had her augmentative communication evaluation Monday. She didn’t want to “perform” but the therapist still recommended, based on the reports of myself and her speech therapist who also attended the evaluation, a low-tech device like the go talk 4+, the cheap talk 4 or 8, the 7 level communication builder, or even the super talker. We now have access to the lending library where she’ll get to borrow any of those devices and test drive them for a month at a time.
We’re also going to be bumping speech therapy up to twice weekly so she’ll have an extra hour of therapy each week (up to 7 therapy sessions a week now). I, of course, have mixed feelings about this. I want her to have the most opportunities for success and yet still give us time to have a life outside therapy. I just can’t rightly keep that hour of therapy from her. Not when we only have just over a year in early intervention left.
Kaia’s Grandma and Grandpa came to town for the weekend to help Paul out while I was holed up in said office and it’s always so great to have them around. The best part is how much Grandma absolutely adores Kaia and all the nitty gritty details of taking care of her – changing her diapers and even the messy, frustrating business of feeding her.
Bonus of having Grandma and Grandpa here: Paul and I got to go on a couple dates. I surprised him Friday night with a couples massage. He had never had a professional massage. It had been years since I had. We were both all giggly and excited to do something so different. I felt a little extravagant about spending so much money on a hour’s worth of luxury. I felt much better about it after finishing the taxes and discovering that uncle sam decided to reward us this year with a nice little refund.
Let’s see, what else? Kaia had her augmentative communication evaluation Monday. She didn’t want to “perform” but the therapist still recommended, based on the reports of myself and her speech therapist who also attended the evaluation, a low-tech device like the go talk 4+, the cheap talk 4 or 8, the 7 level communication builder, or even the super talker. We now have access to the lending library where she’ll get to borrow any of those devices and test drive them for a month at a time.
We’re also going to be bumping speech therapy up to twice weekly so she’ll have an extra hour of therapy each week (up to 7 therapy sessions a week now). I, of course, have mixed feelings about this. I want her to have the most opportunities for success and yet still give us time to have a life outside therapy. I just can’t rightly keep that hour of therapy from her. Not when we only have just over a year in early intervention left.
Thursday, April 9, 2009
Free nursing cover (only pay $7.95 shipping)
My bargain hunting friend forwarded me this deal borrowed from Babycheapskate:
http://www.uddercovers.com/shop1.php
Use code onefree to snag a free pink or blue nursing cover from UdderCovers. Originally $32. Great shower gift! Grab one before they're gone.
I ordered the blue one because I'm still nursing Kaia and I've been wanting to try a cover with the built-in rigid neckline. I just got it in the mail the other day and while it was worth the cost of shipping, I wouldn't have paid much more than that for it. I still think it's a great deal worth passing on, though. There are only pink and blue ones remaining, and the blue ones are on backorder and won't be shipped until after May 1st. Get yours while you can!
http://www.uddercovers.com/shop1.php
Use code onefree to snag a free pink or blue nursing cover from UdderCovers. Originally $32. Great shower gift! Grab one before they're gone.
I ordered the blue one because I'm still nursing Kaia and I've been wanting to try a cover with the built-in rigid neckline. I just got it in the mail the other day and while it was worth the cost of shipping, I wouldn't have paid much more than that for it. I still think it's a great deal worth passing on, though. There are only pink and blue ones remaining, and the blue ones are on backorder and won't be shipped until after May 1st. Get yours while you can!
Monday, April 6, 2009
Got support?
Okay, I have to admit I stole that tagline. It was on the t-shirts sold last summer at the conference for Kaia’s syndrome, It’s emblazoned across the chest and is a little embarrassing to wear in public but I love it nonetheless.
I was talking with an old college friend today that just had her first baby a month ago. It made me realize how much support and connections I’ve encountered as a new mom. Paul and I have lived in Indianapolis for 7, almost 8 years now. I’ve made more friends in the past two years, since Kaia was born, that I did in the 7 years living here prior to that. I’ve sought out and accepted recommendations from others to social groups. Some have been more helpful than others.
My favorites are my CP Moms Group, a group started as a support group for moms with kids with CP but which also graciously extends their support to other moms with kids with special needs. Since so many kids with Kaia’s syndrome are misdiagnosed as having CP (or autism) I’ve found I have a lot in common with these ladies.
When I met them I really didn’t know any other moms with kids with special needs. In fact, the only other mom I knew that had a baby with special needs suffered the loss of her little girl, who passed away last August. That baby’s death was unexpectedly difficult for me. There were several emotions intertwined: the loss of the one person I knew locally who could relate to what I was experiencing (she moved to another state following the death), guilt (albeit irrational) over my child doing well, thriving and surviving, and empathy for her loss.
Shortly thereafter, a friend forwarded me info on the CP Moms Group and I attended the first group meeting in October, not sure what to expect. I found an incredibly supportive, well-educated, resource-seeking and sharing group of women. Our kids are different ages, with different abilities, but we share the experience of parenting a child with special needs. It truly is nice to know you’re not alone. We meet at least once a month sans kids and talk about our and our children’s challenges and triumphs. Sometimes we get together with kids for playtimes too.
Tonight I attended a writing project group for moms of kids with special needs. It isn’t restricted to certain diagnoses. I vacillated about going – would it be worth the effort (it’s a long drive, 40 minutes each way)? I decided since I didn’t have class this week that I would try it.
Again I discovered a group of women anyone would admire – women operating under a set of circumstances I could never admit to wanting (one has 3 children with an autism diagnosis) - yet they are committed to finding the joy (our topic for the night, although I’m told they delve into the darker side/emotions of having a child with special needs as well), sharing the most helpful resources, and who are just generally articulate, enjoyable people with whom to pass an evening.
The group intends to meet (and usually does) at a church that allows free use of meeting space, but tonight there was an issue with a locked door so we went to a local Mexican restaurant. Some of us had margaritas, there was no writing done, but there was much bonding and sharing. I think it was worth the effort. I also discovered a potential resource for the future for Kaia that could save us thousands of dollars. More about that later.
What are your sources of support?
I was talking with an old college friend today that just had her first baby a month ago. It made me realize how much support and connections I’ve encountered as a new mom. Paul and I have lived in Indianapolis for 7, almost 8 years now. I’ve made more friends in the past two years, since Kaia was born, that I did in the 7 years living here prior to that. I’ve sought out and accepted recommendations from others to social groups. Some have been more helpful than others.
My favorites are my CP Moms Group, a group started as a support group for moms with kids with CP but which also graciously extends their support to other moms with kids with special needs. Since so many kids with Kaia’s syndrome are misdiagnosed as having CP (or autism) I’ve found I have a lot in common with these ladies.
When I met them I really didn’t know any other moms with kids with special needs. In fact, the only other mom I knew that had a baby with special needs suffered the loss of her little girl, who passed away last August. That baby’s death was unexpectedly difficult for me. There were several emotions intertwined: the loss of the one person I knew locally who could relate to what I was experiencing (she moved to another state following the death), guilt (albeit irrational) over my child doing well, thriving and surviving, and empathy for her loss.
Shortly thereafter, a friend forwarded me info on the CP Moms Group and I attended the first group meeting in October, not sure what to expect. I found an incredibly supportive, well-educated, resource-seeking and sharing group of women. Our kids are different ages, with different abilities, but we share the experience of parenting a child with special needs. It truly is nice to know you’re not alone. We meet at least once a month sans kids and talk about our and our children’s challenges and triumphs. Sometimes we get together with kids for playtimes too.
Tonight I attended a writing project group for moms of kids with special needs. It isn’t restricted to certain diagnoses. I vacillated about going – would it be worth the effort (it’s a long drive, 40 minutes each way)? I decided since I didn’t have class this week that I would try it.
Again I discovered a group of women anyone would admire – women operating under a set of circumstances I could never admit to wanting (one has 3 children with an autism diagnosis) - yet they are committed to finding the joy (our topic for the night, although I’m told they delve into the darker side/emotions of having a child with special needs as well), sharing the most helpful resources, and who are just generally articulate, enjoyable people with whom to pass an evening.
The group intends to meet (and usually does) at a church that allows free use of meeting space, but tonight there was an issue with a locked door so we went to a local Mexican restaurant. Some of us had margaritas, there was no writing done, but there was much bonding and sharing. I think it was worth the effort. I also discovered a potential resource for the future for Kaia that could save us thousands of dollars. More about that later.
What are your sources of support?
Sunday, April 5, 2009
How much sleep is enough?
Have you seen the latest sleep research by Ferber? In the most recent issue of Babytalk, he explains that babies need less sleep than we’ve thought. “We’ve found that infants don’t need nearly as much sleep as we once thought. The idea that 4-month olds can sleep 15 or 16 hours a day is wishful thinking…”
I gotta say, this is the news I’ve been waiting to hear. For months, since Kaia was born, really, she’s needed less than the recommended number of hours of sleep. For a mom desperately trying to provide her child with the optimal environment, it has been a lesson in acceptance to realize that she just doesn’t need that much sleep. Most days she gets a total of about slightly less than 12 hours total sleep; nighttime and day sleep included. She does about 10 hours at night on average and a good one to two hour (on the good days) nap.
Turns out that’s right on target. According to Ferber, an 18 month old needs a total of 11 5/8 hours of sleep per day, 9 5/8 hours of that occurring during the night and a 2 hour nap during the day. He says that a 1 week old baby is the only age that needs 16 hours total sleep per day, then it goes down to 14 hours at 1 month, 13 hours at 3 months, 12 ½ hours at 6 months, and down to 11 5/8 hours by 18 months.
Maybe there are some extraordinary toddlers that will sleep 12 hours at night and take a two to three hour nap during the day. But not my Kaia. I wish it were so. Aah, I wish it were so. You can lead a baby to the crib, but alas, you just can’t make her sleep.
I gotta say, this is the news I’ve been waiting to hear. For months, since Kaia was born, really, she’s needed less than the recommended number of hours of sleep. For a mom desperately trying to provide her child with the optimal environment, it has been a lesson in acceptance to realize that she just doesn’t need that much sleep. Most days she gets a total of about slightly less than 12 hours total sleep; nighttime and day sleep included. She does about 10 hours at night on average and a good one to two hour (on the good days) nap.
Turns out that’s right on target. According to Ferber, an 18 month old needs a total of 11 5/8 hours of sleep per day, 9 5/8 hours of that occurring during the night and a 2 hour nap during the day. He says that a 1 week old baby is the only age that needs 16 hours total sleep per day, then it goes down to 14 hours at 1 month, 13 hours at 3 months, 12 ½ hours at 6 months, and down to 11 5/8 hours by 18 months.
Maybe there are some extraordinary toddlers that will sleep 12 hours at night and take a two to three hour nap during the day. But not my Kaia. I wish it were so. Aah, I wish it were so. You can lead a baby to the crib, but alas, you just can’t make her sleep.
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