Category Archives: Parenting

Resources for Special Needs Families – March 2015 Edition

This is a brief list of resources that I have found through my journey as a special needs parent.  I’ve tried to include mostly general sites, rather than those focused specifically on my daughter’s own health issues (epilepsy and autism), but there are a number relating to autism specifically.  Also, I should note that I am located in the United States and my sources tend to be as well.  However, I hope that the information contained in these resources can help ANYONE or provide ideas of sources for help in other areas. *In addition, I should note that I am not affiliated in any way with any of these sites.  These are just sites that I’ve found as I explored.*

  • Books
    • “Schuyler’s Monster: A Father’s Journey”  by Rob Rummel-Hudson
    • The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch
    • Shut Up About Your Perfect Kid by Gina Gallagher
    • The Special Needs Parent Handbook by Jonathan Singer
  • Magazines
    • Autism Parenting Magazine
    • Parenting Special Needs
    • Exceptional Parent
    • Thrive Magazine

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10 Ways to Organize at the Start of a New School Year

Back to School

Ok, my children are in second and fourth grade.  I have put this off long enough.  I have been trying to find a workable system to keep track of appointments, school events, paperwork, things that are to keep at home, things to return to school, and so forth.  So…finally I have committed to doing this for 2014-2015 school year.  Go me…lol.  Better late than never!

This year I have started some new things in an effort to start getting my family more organized.  Here is my list of projects:

  1. Notebooks for each child.  Name, teacher’s name, grade, school year and school will go on the front page.  Name and year on the spine – if I can get that arranged.  In each:
    • Page with school address, telephone number, fax, school nurse name and contact information, and hours.  I will also put the teacher, her email address, contact number (phone extension) and hours I can reach her.
    • Copy of the school system calendar for the year, along with information on make-up day schedules
    • Section for correspondence with the teacher and with the nurse as needed
    • Section for IEPs, report cards, etc.
    • Section for notes from meetings and the like
    • Section for papers to save
  2. Create a place to save special artwork and larger documents.  Ideas include:
    • Files in a file cabinet
    • File specially designed for the purpose
    • Frame that allows you to easily rotate artwork out
  3. Put together a “study basket” with necessary materials (not all of these apply to my son, who is 9, but would be good for older kids):
    • Pens
    • Pencils/pencil sharpener
    • Eraser
    • Scratch paper
    • Calculator
    • Loose-leaf paper and clipboard
    • Crayons
  4. Organize school lunches.  One thing my husband and I have started doing is making up snack bag servings of sides and treats for lunch boxes for about a week at a time.  Sunday evening is when my husband usually gets these ready; we’ve broken down getting-ready-for-school activities – he gets lunches ready and I feed and dress the kids in the morning.
  5. For next year, I want to try following a checklist that I found here.  Mind you, the actual checklist is one on a list of organizational ideas linked from other locations.  Still, it breaks down all the different things you need to do to get ready ahead of time for the start of a new school year.  Great checklist to follow!
  6. Organize the calendar.  Put all of the appointments, school events (print out school system calendar as soon as its available), and family events – then color-code by individual.  It makes it so much easier to see at a glance who is doing what during the week.  Also, find out if there are any due dates known up front for applications to things, deadlines to have information in by, and the like – add those to the calendar and highlight in their own color!
  7. Designate a place in your house to store school supplies and store them there.  At the end of the year, place the unused supplies there as well – next year, you may not need to buy as much.
  8. Clean off the fridge and start the new school year fresh.  Put the new school calendar or class calendar for the month up, list of school supplies, and a plastic bag for box tops.
  9. Establish the daily routine early.  Kids do so much better with a regular schedule, especially a lot of special needs children.  Get them into the routine of doing homework first, relaxing, going outside and playing, dinner with the family (as much as possible with multiple schedules…sigh), and taking a bath.  Develop a bedtime routine for younger children and try to be consistent, even on the weekends.
  10. Establish a checklist near the door, if possible.  Ask some questions before leaving the house, or before breakfast:
    • Does anyone need lunch money?
    • Does anyone need money for a field trip?
    • Are lunches in backpacks?
    • Is homework where it is supposed to be?
  11. Establish good routines EARLY in the year.
    • Make sure everyone has enough time in the morning for everything that needs doing: getting dressed, eating, brushing teeth, and making sure everything is in backpacks.
    • Adjust after the first few days.  Get homework and supplies for the next day at night and put it in the backpack.
    • Lay out clothes, if necessary.
    • Get older children to help with younger ones, if possible – or to help with getting breakfast materials out and on the table.,
    • Keep bedtime at the same time as much as possible.
  12. A few extra tips:
    • Keep the school’s list of supplies that are needed each year.  If you maintain a file, it should help limit buying multiple items like calculators, rulers and so on that can carry over from one year to the next.
    • Make sure your child has a school planner.  Some schools are starting this process on their own; my son’s third grade class actually provided one.  If they don’t, start teaching your child to use one early.  There is a wide selection out there and many for different grade levels.
    • Some families use a checklist for each family member – morning checklist, homework or afternoon checklist, night checklist.
    • Consider using a hanging shoe organizer to keep scarves, gloves, water shoes, and other small things handy.
    • Organize your pantry and make sure you have supplies for easy meals.

School supplies

I will say that my circumstances – having a special needs child that gets into everything and pulls things off of the wall – changes the way I do things.  I have seen a LOT of ideas online for creating a communication center where put correspondence from the school that needs responses from parents or signatures, things that need to be paid, and the like.  I’ve seen suggestions for giant calenders on the wall, where you can put color-coded appointments for each family member.  All of those are great ideas, but unworkable for me, unfortunately.  At any rate, here are some suggested sites for good organizing ideas for families without the complications that our family faces:

Simplify101 – Back To School Organizing Tips

Babycenter – 12 Ideas for Back-To-School

 

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A Letter to My Daughter on Her First Birthday

My sweet little girl,

I cannot tell you how much I have treasured this year, even though I’ve been exhausted for most of it. It is absolutely incredible to watch you discover the world around you and to discover the fact that you can interact with it.  I’ve watched you go from a tiny, helpless infant to a determined girl with a mind of her own.  You obviously have places that you want to go, to explore and all you want from those of us around you is perhaps a hand to chew on or hold on to while you pull up.

You seem to be a very determined, strong girl, sweetheart.  It has broken my heart to watch you struggle with the seizures that started at about 9 months, but you have adapted to the point that you frequently go right back to playing as soon as they pass.  Sometimes you barely even blink through the seizure.  I am quite certain that you will do ANYTHING that you put your mind to, regardless of what it is.

I love you more than words can say and I already admire your grit.

Love,

Mommy

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Cold Drugs and Children

According to the Washington Post on January 29, 2008 (article here), more than 7000 children per year get rushed to emergency rooms due to adverse reactions to cough/cold medicines. According to the article, most of the problems occur in children ages 2-5, who got into the medicine on their own.

The researchers based their conclusions on information from a “nationally representative sample of 63 emergency rooms in 2004 and 2005.” This is coming as the FDA considers whether to further restrict the use of these products. The issues are the risks involved and the possibility that the products simply aren’t effective in young children.

Pediatricians are arguing that the drugs are not effective in young children and pose too great a risk to continue to allow their usage; the Consumer Healthcare Products Association, an industry group, says that the report shows that the problem really lies in parents giving incorrect dosages or failing to make sure the medicine is out of the reach of children. Last year, the industry voluntarily withdrew all products marketed for children under the age of two, but insisted that the products were safe for children older than 2.

The CDC said that last year at least “1500 children younger than 2 had complications in 2004 and 2005 from the products, and an FDA review noted dozens of cases of convulsions, heart problems, trouble breathing, neurological complications and other reactions, including at least 123 deaths.”

In terms of this most recent information, the researchers identified 301 cases between January 1, 2004, and December 31, 2005. “Cold and cough drugs account for 5.7 percent of all medicine-related visits to the emergency room by children younger than 12. The cases did include prescription and OTC products, but researchers said that most of them involved nonprescription products.

Nearly 80 percent of the cases in the ages 2-5 involved situations in which children got into the medicine without their parents’ knowledge.

Basically, the researchers recommended several steps to make the products safer and reduce the risk. Examples include: encouraging parents to put the medicines out of the reach of children, to encourage them to keep them capped, designing better child-proof containers, and also avoiding the use of colors that make products appealing to children.

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Ok, what I really want to know here is this: are the products effective or not? I can certainly take care of keeping the products out of the reach of my children and make sure the caps are on good, but I don’t want to use them if they aren’t going to help!

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More on Children’s Cold Remedies

If you’ve been following the news lately (and the articles I’ve posted references to in this blog), children’s cold remedies are under fire. Now it turns out that they have been “raised questions for years”, according to the Washington Post. (Here, for now). This article was in the Post on Friday, October 26, 2007.

This situation has raised a number of questions (from the article):

  • How could the products remain on the market so ling without proof that they work?
  • Why didn’t the FDA act sooner?
  • Why didn’t the medical establishment warn parents?

It seems that about two-thirds of drugs prescribed for use in children have not been tested in children! In addition, “there are a huge number of drugs that are regularly given to children that have never been tested in children,” said Michael W. Shannon, a professor of pediatrics at Harvard Medical School. “I’m very concerned that many of these agents may also be inappropriate for children.” One factor in the lack of testing in children is the fact that it was considered unethical and unnecessary to test drugs in children. The dosages were extrapolated from dosages for adults.

In 1972, the FDA did organize a panel to review nonprescription cough and cold medicines; previously, their attention had been focused on prescription medicines. This panel concluded that there was enough evidence to endorce 35 of the 92 ingredients. That recommendation was based on studies in adults. In 1976, the group recommended that doses for children be extrapolated from data for adults.

“As researchers began testing some of the products directly in children, they slowly started to raise disturbing questions. The Journal of the American Medical Association published an analysis in 1993 that concluded there was no good evidence that the medications worked. The Cochrane Collaboration, an independent international project that regularly evaluates medical therapies, reached a similar conclusion in 2004.”

The article goes on to say that although many pediatricians began to counsel their patients not to use these products, some continued to tell them that they could use them. The products remained very popular. In 1997, the American Academy of Pediatrics adopted a policy stating that cough medicines are ineffective. The American College of Chest Physicians produced a similar statement in 2006. However, many other organizations have never issued any formal guidance to doctors on this subject.

I have a two year old (almost two and a half) and my doctor has never mentioned any concern. I have to admit that he is rarely sick, but he has had an occasional cough/cold. I had no idea that these products had not been tested on children, that there were concerns that they were ineffective. Giving a child medicine is enough of a struggle; why would I continue to do so, if it is not going to help?

Some experts are defending the doctors’ groups, saying that they are up against a multibillion-dollar industry, a group that aggressively markets their products (spending more than $50 million a year to sell their stuff). I can understand that to a point – it is like going against the tobacco lobby and all the tobacco firms; they have a lot of money to throw at the situation. Still, as a patient, it would have been nice to have been told this. I don’t understand why more doctors don’t say something to their patients.

On the bright side, the FDA has started demanding that some prescription drugs be tested in children before they are approved. It has also enticed drug companies to conduct pediatric studies of some medications already on the market; unfortunately, the article fails to say how they enticed them. The FDA is reviewing recommendations, but it says that formal action could take years. The industry has voluntarily removed products designed for children younger than two from the market, but “maintains that the remedies are both safe and effective for older children when used properly.”

Well, I’m going to keep watching to see what happens. I want to know if the industry will police itself, if the FDA is going to wake up and take action, … I want to know if doctors are going to pass on information like this to their patients in a more organized fashion. I’m also going to do my part and be a more aware consumer.

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Recall of Children’s Cough Medicines

Johnson and Johnson recalled specific infant cough and cold products today, saying that “rare” instances of improper use, particularly in infants under two years old, have lead to overdoses. These products include:

  • Infants’ Tylenol Drops Plus Cold
  • Concentrated Infants’ Tylenol Drops Plus Cold & Cough
  • Pediacare Infant Drops Decongestant
  • Pediacare Infant Drops Decongestant and Cough
  • Pediacare Infant Dropper Decongestant
  • Pediacare Infant Dropper Long-Acting Cough
  • Pediacare Infant Dropper Decongestant and Cough (PE) products

This recall does not include cough and cold products for children two years and older, or products that are single-ingredient pain reliever and fever reducers expressly labeled for infants.

The Washington Post article is here.

This certainly got my attention. I use, or have used, one product on that list. Of course, I used it properly and after my doctor said it was fine. Still…it makes me second-guess myself; should I give my child this medicine? On the other hand, how can you not give a sick child something if you think it will help?

Well, now the FDA’s Nonprescription Drugs Advisory committee will be meeting this month to discuss the use of cough and cold drugs by children. I will be very interested to see what comes out of that meeting.

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The FDA and Cold Medicines for Children – Part II

According to a Washington Post article today, here (for now), federal officials are now recommending that “consult your physician” be dropped from guidelines on boxes of cold/cough medicine for children under two.  These medicines, in many cases, simply should not be given to young children.  “The preliminary recommendation, from Food and Drug Administration safety officials would apply to decongestant use in children under 2 and antihistimines in those younger than 6, according to agency documents released Friday.”

More than 350 pages of documents were released on Friday.  They are part of a broad investigation into whether roughly 800 medicines (yes, 800) are safe and effective in treating children’s colds and coughs.  Many of those medicines are popular and widely used.

“An FDA review of side-effect records filed with the agency between 1969 and September 2006, found 54 reports of deaths in children associated with decongestant medicines made with pseudoephedrine, phenylephrine or ephedrine. It also found 69 reports of deaths associated with antihistamine medicines containing diphenhydramine, brompheniramine or chlorpheniramine.”  In addition, a Centers for Disease Control and Prevention report also found more than 1500 toddlers and babies wound up in ERs in a two-year period as a result of the medicines.

The Consumer Healthcare Products  Association (represents makers of OTC medicines)  is backing the recommendation that these products not be given to young children and in terms of antihistamines, they recommend that a warning be added that the medicines not be used to sedate children.

How sad is it that you have to add a warning about that?  And really, do they think that the types of people that would use it for that purpose would care whether there is a warning on the box or not?  It seems to me that the only purpose for that warning is for legal purposes for themselves.  I admit that I’ve wondered about how effective these medicines have been on my two-year-old, but he’s rarely (thank goodness) sick so it hasn’t come up much.  He has taken an antihistimine occasionally, on the recommendation of his doctor, so I wonder about that part of the article as well.  I’m going to have to talk to his doctor about this next time I go in (or rather, next time WE go in).

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