Brothers and sisters

I have a brother. Some of you may know what. Still others may know that and yet be shocked to learn that is still the case. He is a bit of a loner, my baby brother, and would have much preferred to be an only child. In theory, I am the extrovert and he is the introvert. Mom says that made life in our house interesting when we were growing up. She used a different adjective, actually, but I don't want anyone to get the wrong idea about my mom. She is a saint.

So I understand the mysterious often love/hate relationships that can exist among siblings. But having one on the spectrum adds a whole new twist to the situation. I am hoping some parents (or siblings) can offer some comment on this. It is just about wholly consuming for me to figure out how to facilitate a relationship between my son and my daughter.

Ok, my son is only 2. But he is the Extrovert. With a super capital E. And he talks and talks and wants to do everything with his big sister. He is crushed when she brushes him off, or, even worse, hysterical when she launches a toy at his head. I am assuming that as he gets older he will gain an understanding of his sister and her quirks, limitations, and gifts. But at the moment it is just so unhappy for both of them much of the time (not to mention miserable for me). They mix like the proverbial oil and water.

She wants, she NEEDS, space and downtime and quiet. He doesn't want or need any of these things. I have thought of finding a school or playgroup for him to attend once she gets home from school so she can have that time. Transitions are tough for her and it makes a huge difference if she can just be on her own for an hour. He is so happy to see her after she has been gone all day he talks at a mile a minute. She walks around with her hands over her ears.

It is pretty clear I don't have a lot of control over these kids and their needs/reactions, but dear God, there must be something I can do!! It makes for a very stressful rest of the day and by the time my husband comes home I just want to hide. Separating them all day even more than they are now seems unnatural somehow. But I really think that will bring more peace to everyone until Daniel is older and can be the one to compromise a little whereas his sister can't. And in school he will get the attention he craves from her from other, social little beings like himself. Are these good reasons to give them more time apart? Am I crazy? (don't comment on the second question. That means you, Romany :) )

That book I just finished, More than a Mom, has a great section on siblings. It talks about how to approach each type of child and more than anything makes it ok to not expect everyone to get along. The section started out with something like "The sibling of a special needs child is automatically a special needs child him/herself. Having a special sibling makes the "typical" child un-typical.

Guess that makes us special needs parents. What are your special needs?

Motherhood and truth

Oh, the truth! That very messy, annoying thing called the truth. I just read an article about moms spilling the truth about what its like to be a mother on the CNN.COM site. It is very telling and I will put the book these women wrote, I was a Really Good Mom Before I had Kids, on my list of books below.

This interview and the book both delve into the unpleasantness of motherhood that most women won't admit or discuss because it makes them feel so guilty. No one wants to be a bad mother, not even the ones who are truly, actually bad mothers! And these women are just talking about raising healthy, typical kids (as far as I read at this point.) Take these stories and add the requirements of special needs kids.

If you know a mom who does a great job, tell her so! And tell her twice is she has special needs kids! We have to support each other.

Has anyone seen my deodorant?

The financial chapter in the More Than a Mom book I am still reading is a great summary of the types of extra expenses we can have as special needs parents. Some examples they provide:

• Special computer programs for learning and entertainment
• Adaptive equipment for physical limitations
• Experimental medication/therapies
• Intensive behavioral programs
• Training conferences for parents
• "Babysitter" who is qualified to care for your child
• Books, videos, conferences to keep up on latest research

The list could go on and on depending on the severity of your child's autism. For example, we bought diapers for five years, until a state program began to provide them for us. It was a tremendous financial relief when we didn't have that particular expense anymore.

Another type of expense is incurred by my daughter's allergy to gluten. Now, GFCG (Gluten free Casein free) diets and all it's various forms are blogs all unto themselves and I have plenty to say about that at a later time. But gluten free items are VERY hard to come by and very expensive, especially when my daughter has food sensory issues on top of that.

A major expense I think this chapter failed to acknowledge is the wear and tear of every day living. Again, no two autistic kids are alike, but in our case our daughter is very de-structive. And I mean to write it like that.....she simply likes to take things apart. Everything. And she can do it very, very quickly. She likes to pile and sort and hide things. Spoons. Tubes of toothpaste. Makeup. The wheels off of toy cars. Chapstick. Loose change. Notebooks. Crayons. Pens.....the list changes from time to time but thinking you know where a hair brush is in the morning when you are already 15 minutes late and then not being able to find a single one (or your shoes, for that matter) is nerve racking enough to make you purchase four of them and then hide them in various places you will hopefully remember. It is an exhausting way to live, but the issue here is the cost of replacing toothbrushes once a week rather than once a month because she collects them and they end up outside, or who knows where. There are many, many household and personal items that find themselves with short lives in our house. And they all have to be replaced somehow.

BTW, locking these things up not only makes life even more challenging, it is almost impossible to keep her out of anything anymore. She is tall, smart and agile.....my expensive face lotion hidden in on the top shelf in my closet won't make it here a week, I bet!

Vacations, mainstreaming, yawn......

I was more than bit relieved to recently hear other parents with special needs kids talking about "separate vacations." I have struggled with this idea of the whole family not taking trips together...it just seems to be one of those sacrosanct things. But, the discussion is about what is fair to your children, typically developed or not. (It is really late so I am going to wish I had written this after I had some sleep....but I know some of you are up right now as well and will understand me anyway) :)

We have had to limit our travel with my daughter because it is more disruptive to her than anything. I think as she is getting older that is improving. But my son, even though he is quite young, is such a social animal and so inquisitive I think he would enjoy most trips. As he gets older he will understand better that our family may not function exactly like other families do and we have to make special considerations. This actually leads to another topic I am fond of---mainstreaming in the classroom.....but I digress.

G'night for now.

What's Going on in There?

I have a link for this book at the bottom of the page because it is a GREAT book if you are a geek like me and want to know why, why, why. I bought this book when I pregnant with my first baby (my daughter) because I was fascinated by what could be going on with this little developing life. It is about brain development from conception to 5 years old. It provides technical answers that are easily understandable by the average person. I learned so much from this book and continue to do so, especially as I educate myself on neurological disorders and need to revisit what we know about the brain's development. It is helpful to understand how much we know, and what we think we know, about the human brain. We really don't know much. We are mostly guessing. Comforting, isn't it? :)

Potty trained?

I am often asked if my daughter is potty trained. Even though she is 8, this is a valid question since many children on the Autism Spectrum struggle with potty training for years. It is a difficult question to answer. I know she understands the concept and is aware of her body so she knows when she has to go. She has gone without "accidents" for weeks and weeks at a time before. But generally, now, she is potty trained at school (about 80% of the time) and hardly at all at home. And this can change daily.

Like many ASD (Autism Spectrum Disorder) kids, she regresses when there is a lot of stress or change. When we moved to a new house, for example, it was weeks before she would use the potty at the new house.

Also, I believe that in my daughter's case it is a way for her to express herself since she cannot speak. And for the most part, she reserves this particular "language" for me :)

Which brings me to today, like many, many other days. When she is upset with me and/or wants my attention she poops somewhere. Anywhere but the potty and most anywhere I will particularly get upset about. Such as my scrapbooking supplies. Or the middle of my bed. Among books on the floor in my room. Sounds a bit like a puppy, right? Well, I don't think that is too far off. Animals who don't know how else to express themselves find a way, SOME way to tell you what they think. Now, please, nobody freak out that I am mentioning my daughter and a puppy in the same sentence. But for those of you who don't have this experience, I am trying to share as accurately as I can. There is never a dull day!

More than a mom

I have been eyeing this book on Amazon for quite a while and I finally bought it and began reading it a couple weeks ago: More Than a Mom (Living a full and balanced life when your child has special needs). The first couple chapters made me roll my eyes at the typical "make time for yourself, get enough sleep, eat right, etc. because you can't care for your child if you are not cared for yourself, blah, blah, blah." Moms who are not new to this tend to find that stuff trite after a while. However, now that I am more than halfway through the book I can see some useful advice and anecdotes, even for seasoned moms. I know I am a bit jaded and after I read more I realized that I needed to be reminded of these fundamental truths when you raise special needs children:

1. You are still you. Just because it feels like you have lost your identity doesn't mean it is not still there for you to reconnect with.

2. Your health WILL suffer if you do not stop to address it at some point. This is inevitable. Your physical health, mental and spiritual health as well, will suffer from neglect. Just expect this if you cannot take care of it as you go along.

3. Just like your health, your marriage and other close relationships will also suffer if neglected because your child is all consuming. Also put this on your list of inevitable.

4. Guilt is only meant to take you so far and then it is downright destructive. I believe that guilt exists to spur us to do the right thing, but women, especially, experience guilt way, way beyond it's intended usefulness. Yes, you are her/his mother and yes you do know your child better than anyone but you are not your son/daughter's only parent.....we are all children of God and have to keep faith alive so we are not burdened with the worries of the universe.


I am writing this list for myself, because I am always ignoring these truths. The present moment with my daughter is always too pressing for me to step back and observe anything this encompassing. But if I don't look at the overall journey sometimes, I won't know where I am headed.

Welcome home

I just returned from a four-day trip and my daughter welcomed me home with open arms. It is such a joy to get hugs and smiles and giggles from her. Both she and her brother kept a close eye on me this evening just to make sure I wasn't leaving again :) They even managed to share some cuddle time with me simultaneously, which is rare.

Happy Birthday to my blog

My dear, dear friend Connie suggested I do something like this and it immediately clicked with me. So, today my blog is born. Just as any newborn, I THINK I know what it will look and be like, but these things tend to take on a life of their own :) My intention is to:
Write about daily happenings in my family's life with our 8 year old daughter who has been diagnosed with Autism.
Write about the various books and articles I read about Autism and provide links to them for you.
Avoid giving any advice or direction beyond things like "deep breathe," or "take better care of yourself," which will mostly be directed at myself anyway.
Answer any posts or email the readers of my little blog may have.

Have a lovely Palm Sunday. I will be back soon.

Becky