Me, A Mom

3 kids and a dog

Archive for the tag “advocating for your child”

As I open up the betty crocker as an allergy mom…

Yes that is the one I have…but it no longer has its covers attached.

I remember when my second child then my first child were diagnosed with food allergies

My second child was 6 months old or so, and my first was around 4 years.

I wasn’t told “he can’t have dairy” or “NO NUTS” between the two they are allergic to eggs, peanuts, treenuts, and then to boot the second child is allergic to dairy as well.

To say I was overwhelmed would be an understatement

then, as someone who likes to cook I knew I had to figure it out.

and it took awhile

hits and misses

winners and garbage can left overs

it has become manageable

(thankfully they can still have wheat…that would be  a whole nuther ballgame)

1.  We learned that soy sour cream works really good as an egg substitiute(1/4 cup per egg called for in recipe)

2.  We learned that there is nothing that works well as an beaten egg white substitute(think meringue)

3.  We learned that ground flax seed also works ok for egg(better for quick breads and cakes) use 1 tbsp ground flax seed and 3 tablespoons water  stir, do for each egg called for.

4. We learned to read labelsevery product, everytime, you never know when a company may change their formula, or which line they make the food on(cross contamination)

5. We learned it is very difficult to eat out in our town…places often have signs saying they cannot guarantee any food is safe.

6.  We learned that some people get it…and some just don’t  it is only important that we know who we can trust.

7.  As soon as the kids learned to read(even the one without any allergies) that they help double check labels.

8.  We learned homemade picnic lunches are just as good as going out on trips..plus healthier

9.  We learned to check ahead before going to parties, or playtimes, and regardless of what they say, bring food from home just in case.

10. We learned life goes on. Everyone has something to deal with, many times those things are invisible and though not necessarily as potentially deadly as food allergies. Life goes on you live, you adapt, you learn what works and doesn’t work and then if you are cool…you share some of that with those that want/need to know.

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A 5 is against the Law

I just started reading this workbook

and have not yet worked with my son with it

While this workbook may not change your life

it could help change the life of a child you know

that is struggling to behave appropriately in the world around

I do not know enough yet to delve into the inner workings of how to use the scale of 1-5

it can be used to reflect on  behaviors

and

also used to refer to how ones inner feeling are(think anxiety, fear, agitation, etc)

even for someone not on the “spectrum” it is good to self evaluate and know and acknowledge  what/how you are feeling

there is a website

the autism program

that can help get you started

but I strongly recommend getting the book yourself.

the autism program also has a great resource page 

and the autism society of Wisconsin also has some great information, and if you are in Wisconsin you can visit a local chapter for support and information.

you can find more at Kari’s website 5 is against the law

so

back to reading

the best way to advocate

is to educate

Autism and life

So my sons diagnosis came late in life….for a kid.  He was 15.

Thought we’ve suspected for years he that he was on the spectrum.

So I did what you do, when someone you love gets a diagnosis

I read. and read, and read till I can’t read anymore.

Then I realize we’ve been doing it right.

My son is high functioning the degree of autism varies so greatly from aspergers/high functioning Doctorate earning Temple Grandin down to people who are non verbal and severely mentally/physically disabled

But some of the things I’ve noticed from all the books I read is that the children who have more success …have more structure

1.  set expectations then…follow through(they’ll get there but it’s going to take A Lot of repetition 

2.  practice, practice, practice

3.  Teach (as much as possible) skills of daily living…every day.

4.  from folding laundry(more simple) to balancing checkbooks(perhaps higher functioning autistics) as many skills that we can teach our children the more successful they’ll be in the future

5.  understand and notice their melt down points, do they need noise reduction headphones, do they need special glasses to filter out fluorescent lighting

6.  Give a safe place to melt down and then stick to it,  …You may tantrum on your bed…not in the living room….better yet get them there before the melt down happens

7.  Pay attention, learn their triggers, teach them how to avoid their triggers or deal with them…

Obviously the success of the above depends on the degree of disability of the autistic person.

Many days it’s baby steps…the same baby steps every day

find an outlet for yourself

if you don’t take care of you

you won’t be able to take care of them.

My Child is dairy Allergic….NOT LACTOSE INTOLLERANT

So we recently visited the school my son will be at next year…and as most he will have to take home ec.

I mentioned to the teacher that he is ALLERGIC to DAIRY, EGGS, and ALL NUTS!

and she said…

thats ok we’ve dealt with lactose intolerance before

ARGGGGGGHHHHH

people who say that….just don’t get it

in other words….I will be riding that teacher like no tomorrow and making sure she works with me to keep my child safe and by the end of the semester their will hopefully be no doubt in her mind about the severity of FOOD ALLERGIES!

Seriously there IS a difference

once again folks

Lactose Intolerance 

may give you the runs, make your tummy hurt and generally make you feel sick

FOOD ALLERGY

CAN KILL YOU!!!!

Please folks….it gets old it gets redundant but you have to

-advocate for your children

-educate your children

-educate others

and try despite all odds against you to keep your patience

 

 

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