Someone Asked Me, “When Did You Know?”

November 2, 2008 at 8:27 pm | In ADHD, Autism, PDD-NOS, family, kids, motherhood, parenthood, school, sensory processing dysfunction | 1 Comment

Yesterday someone asked me, “When did you know?”  They were referring to my son being on the autism spectrum.  It was a very difficult question, because sometimes I’m still not sure.

I didn’t know for a very long time.  I knew I had a baby that often didn’t make eye contact, but lots of times he did.  I knew I had to work really hard to make him smile and laugh.  Yet when my baby laughed it was always a deep belly laugh.

I knew I had a toddler that HATED water.  Not disliked–HATED!  He tried to expose me at swimming lessons to all of our town.  I knew that he disliked loud noises, loved to wrap his blanket around him.  He had this strange habit of sleeping between his bed and the wall.  I knew he quit eating most foods when he was a toddler. 

When he went to school the first year the teacher didn’t believe he could speak.  I assured her that he could.  He was just shy.  A few years later the teacher told me how he wouldn’t sit in the group, sometimes sat on his head, and wouldn’t look at people.  I figured he might have some social issues.  They suggested ADHD.  I thought that wasn’t quite right.

At an ADHD seminar I found the book the Out-of-Sync Child.  I thought I had figured my baby out.  Yet that wasn’t quite it either.  It wasn’t until between 2nd and 3rd grade that we finally had an evaluation done.  That was when they brought up PDD.  I wasn’t sure that I agreed.

Here we are three years later.  Finally in therapy.  Finally getting the alphasmart at school (I asked for it clear in 2nd grade.)  I finally am coming to terms with it.  It is such a long process for me. 

“When did I know?”  I’m just not sure.

The Power of a Warm Bath

October 9, 2008 at 9:10 am | In ADHD, family, kids, motherhood, parenthood, teaching | 1 Comment

Yesterday was exhausting, not bad, just exhausting.  One of my students didn’t take his meds that morning.  This particular child goes from being focused, on task, answering questions to constantly putting things in his mouth, sitting under his desk, throwing spitballs…you get the picture.  He just required a lot of energy yesterday.  I know that even with the breaks, heavy work (scrubbing desktops), and stress balls to touch that it wasn’t enough.

So imagine my surprise when at noon I get an email from my oldest son’s teacher saying that he forgot to take his pill that morning and has been having “a little difficulty.”    I emailed her back “I feel your pain.”  I sent my husband over to the school with my darling child’s medication. 

By the end of the day I needed a break.  While my family watched an old John Wayne movie, I ran a warm bubble bath and grabbed a book.  I sank it to the tub opened the book, and looked up an hour and 45 minutes later.  What a beautiful mini-vacation.  How do you escape?

Feeling confused!

October 7, 2008 at 8:41 pm | In ADHD, Autism, PDD-NOS, family, kids, motherhood, parenthood, sensory processing dysfunction | 3 Comments

This week our doctor shared the re-evaluations of our son.  Apparently E no longer falls on the autism spectrum.  He is close, but not officially “on”.  The doctor isn’t officially taking away his diagnosis.  They are going to re-evaluate again later this year. 

It took me three years to say he was and now he is not?   I have always said that E is a confusing case.  I remember a group of doctors all looking confused at a meeting in Iowa City.  He isn’t typical.  I have also seen a lot of growth in my baby over his lifetime. 

He is much more tolerant of sensory issues now that previously would have driven him into a melt down.   He looks at people when he speaks to them.  He has some absolutely wonderful relationships!  He is improving in his physical therapy and now only goes once a month.  He hyper-focuses on things less often.  (Meaning:  Before he would start talking about Pokemon and continue it for HOURS!  Now he is able to change the topic sooner.) 

I’m still confused though with how you suddenly aren’t on the autism spectrum any more.  To me he still has many of the same challenges that he had, and although I see improvement… I don’t know…

Teaching Idea to Help Children Choose Partners

October 1, 2008 at 8:02 am | In ADHD, Autism, PDD-NOS, kids, motherhood, parenthood, school, sensory processing dysfunction, teaching | Leave a Comment

An email that I sent out to the staff at my school, but thought I might post here as well:

Last night I went to my sons’ conferences.  For those of you that don’t know one of my children is on the autism spectrum and has auditory brain processing issues.  In other words, it takes him longer to figure out what we are actually saying to him or asking him to do.  Anyway, his teacher brought up that whenever she asks the kids to find partners he ends up wandering around the room without a partner and unsure what to do.  

 

Well she and I talked about this for a few minutes and between us we came up with a good strategy for him.  She is going to tell him early that they will be choosing partners later and to choose two people he can ask to be his partner.  Then instead of letting everyone choose their partner at once, she will release them by rows.

 

I thought this was great and is something many of us could use as we all have these kids occasionally.  You may not have one on the autism spectrum, but you might have one that ends up looking like a deer in headlights when asked to do this.  My son needs the social practice of asking someone to be his partner, but he also needs time to figure out who he is going to ask, how he is going to ask, and what to do if that person is already taken.  My son has the added challenge of becoming easily over sensitized by the activity and volume that ensues from everyone looking for a partner at once.  My instinct tells me that there are others out there that have similar issues.

 

Hope this is helpful,

Really got a glimpse into what my son feels everyday

September 17, 2008 at 5:16 pm | In ADHD, Autism, PDD-NOS, family, kids, motherhood, parenthood, school, sensory processing dysfunction, teaching | 1 Comment

My youngest has PDD or on the autism spectrum, however you want to say it.  He also has sensory issues.  Today I was sitting at a teacher’s meeting with 9 other people at a very small table.  I was thrown 18 (literally) pages of graphs that all basically look the same and was told to sort them into two piles.  The table was covered with stuff, everyone’s notebooks, sodas, boxes of pens, etc… 

There was a tremendous amount of noise.  At our table everyone was talking.  We were supposed to be analyzing data about reading comprehension and fluency.  This instantly starts everyone in defense mode.  “So and so didn’t pass, because of this…” and that kind of thing. 

Between the noise, stuff, people, and mental demands I lost it.  I snapped at the people around me and sort of threw (more like quickly put) the graphs in the middle and said someone else could figure it out.  My brain shut down.  I couldn’t concentrate again.

Part of the problem is that they grouped first and second together.  I was ready to see where are kids are and start looking at where I want them to be, but the first grade teachers are feeling like they need to defend their scores.  Personally, I thought their scores were fine.  They aren’t great, but they were right in line with our district as a whole.  They were also better than ours last year.

For me though it made me think about how I expect E to recover quickly when he has a sensory meltdown, yet here I was unable to recover.  Everyone has some sensory issues, but most of us develop coping skills.  It was odd for me to feel so violated today.  I was just overwhelmed. 

The next time he melts, I hope I remember and am compassionate with him.

The Idea of Keeping an Art Journal

September 8, 2008 at 8:10 pm | In ADHD, Autism, Crafts, PDD-NOS, Working mom, motherhood, school, teaching | 4 Comments

I really like the idea of keeping an art journal.  I have been hearing whispers of such journals all summer and then Jennifer over at CraftSanity interviewed Dawn DeVries Sokol the author of 1000 Artist Journal Pages.  As I listened to the pod cast all I wanted to do was pick up some thin line markers and go to town in a journal.  I love the concept of an art journal.  Just doodling thoughts, ideas, lists, feelings into a picture. 

I think I am a fairly creative person, but truth be told I don’t have a passion that I funnel all that into.  My husband plays his music and you can feel his creativity vibrate through your chest.  But me???  I try this and I try that.  Obviously I have the theatre.  However most of that is truly day to day running the business.  I am not usually (except for Jack and the Beanstalk) in the creative process of putting on the play.  I have things I try.  So far this summer I have drawn, sewn, baked (gained 10 pounds), knitted, rug punched, and I think there may be some things I am forgetting.  (Consequently I don’t do any of these things real well.)

So here I sit with these visions of creating an art journal.  I’m not foolish enough to think I would ever do this kind of thing every day, but I am thinking maybe I will try just a few pages a month.  I would like to incorporate some pictures of my family into these.   

Another reason this is appealing to me is the post last week about stress.  Morroco’s comment about coloring relieving stress came about the same time I listened to the pod cast.  Both idea’s have just been sticking with me. 

So now I have laid it out here.  I think I will give it a try.  Sometime later this week I will post whatever I end up with on my blog.  Maybe you are interested in keeping an art journal.  Maybe not, but the pod cast and Dawn’s website are both very interesting.  I can’t wait to see the book.

*On a separate note I would love to do this with kids during Writer’s Workshop for a few weeks.

Back to School Lunches for My Picky Eater

September 6, 2008 at 4:37 pm | In ADHD, Autism, PDD-NOS, Working mom, cooking, family, kids, motherhood, parenthood, school, sensory processing dysfunction | 2 Comments

I have been searching far and wide for recipes for my son’s lunch.  His food choices are more limited than the average kid’s.  I typically have to send lunch with him 3-4 times a week.  My friend Suzanne started me thinking about this.  After I read her blog entry about lunches this summer, I realized I send Uncrustables almost every day he takes a cold lunch.  I say ALMOST.  I did send a few other things, but not many.

So I have been doing some research of some lunches my boys would eat.  Here is what I have come up with.

  • pizza bread cut to fit in a thermos
  • chicken nuggets
  • ravioli
  • grilled cheese cut to fit in a thermos
  • pinwheel tortilla sandwiches (I haven’t tried this yet.  It could go both ways.  I will start with pbj).
  • dip (I didn’t think of sending dip with his veggies–again peanut butter or catalina dressing.)
  • bugs on a log (E won’t eat raisins, but he will eat choc chips on it.)
  • Meatball sandwich (put meatballs in thermos, so bread isn’t soggy)
  • macaroni and cheese
  • yogurt with vanilla wafers or animal crackers to dip in it
  • Anything resembling pizza–pizza quesadilla or pizza pita
  • ramen noodles (older son only)-put leftover chicken in and veggies
  • cold meat sandwich
  • hot dog
  • banana dog-pb on a hot dog bun take a banana and put it inside (shocked me that he would eat this)
  • spaghetti

There were a lot of ideas that basically were about presentation.  Cutting the sandwiches with cookie cutters or into puzzle pieces.  Getting fun napkins on clearance from Target or the party store.  Using stickers on their bags.  I have used this book, Lunch Box Letters, since kindergarten to send little notes in the lunch.  My kids love it because it comes with a joke.  We have went through two of these books. 

As I write this I feel as if I am possibly opening up myself to some criticism.   I am a little granola crunchy, and have long given up the complete healthy and organic menu for my kids.  The reason?  E wouldn’t eat.  I mean truly wouldn’t eat even though he was hungry.  He has sensory issues.  Lots of people write his response to things as him being a spoiled brat.  Sensory issues are very real and often physically painful to the children that have them.  His motor development also changes his diet.  His chewing muscles aren’t quite as developed as most.  He tends to choose softer things.  Not always, but he will never choose a chewy piece of meat.  I have to insist.

My kids seem to like their new menu this year.  I will add new things when I find them.  If you find something yummy, let me know!

Resources I used:

Dealing with Stress in Your Family with a Special Needs Child

September 2, 2008 at 8:53 pm | In ADHD, Autism, PDD-NOS, family, kids, marriage, motherhood, parenthood, sensory processing dysfunction | 4 Comments

This month at my parent support group meeting the topic was “Stress on Families.”  I didn’t have a large turnout, but we had a great conversation.  As usual I only briefly touched on our topic so I thought I would elaborate a little more here. 

First and foremost I want to say that it takes more parental energy to parent a special needs kid. Specifically I will address kids on the autism spectrum and with ADHD.   One thing I mentioned tonight was that we have to be watching our children constantly, but we also are watching (and trying to control) the environment.  It takes a lot of brain power to be “on” all the time.  Going out can be, well not worth it sometimes.  I know at our house we went for six months where I didn’t want to go to any of my families houses.  It takes too much effort to follow my children around make sure they are not into anything, breaking anything, or having huge meltdowns.  People would freak out and tell me that I need  to relax, and so I would try.  Then when they would do get into something, break something, or have a meltdown people would freak out again.  It was just too hard.  Thankfully it got easier.

There are so many “extra” stresses on families with special needs kids.  The mental exhaustion mentioned above.  The feelings of inadequacy also mentioned above.  Concerns over money and time due to the evaluations, doctor appointments, various therapies.  Stress over trying to get the schools to meet your child’s needs.  Worries about your child’s future.  Then there is guilt and grief.  Guilt that maybe this was your fault or it runs in your family.  Grief that your child is not a “typical child.”  More guilt about feeling that grief.  (This can be a bad cycle.)  Guilt that your “normal children” are not getting what they need due to all of your care and energy of your special needs child.    There is just so much stress.

There are things that you can do to help yourself and your family.  There are big things and little things to help with the stress.

  • Schedule date night–this is huge in keeping your marriage as a priority.  I have friends that can’t afford to go out.  So they plan date night.  First they put the kids in bed.  Then they pull out their PlayStation (sometimes cards) and a bottle of wine.  Their date lasts only for an hour or two, but it is their time.
  • prayer–individual, with your husband, and as a family.  Praying alone is therapeutic and necessary.  Praying with your spouse is powerfully connective, as is praying as a family.
  • exercise–why else would I get up at 5 to walk 2.5 miles???
  • writing in a journal–or a blog  :)
  • talking to a friend on the phone with a cup of tea/coffee/ or whatever makes you happy
  • shut yourself in the bathroom spray yourself with something nice (Victoria Secret’s Love Spell is wonderful) then breathe deep

Lastly though I want to mention family dates.  I think for our “typical” children they often get a lot of responsibility and sometimes less attention than their counterparts.  I truly think scheduling time where that child is the center of attention is important.  If you never go to the amusement park because it is too loud, crowded, or whatever for your special needs child, then take your other child by himself sometime.  It is important to schedule their quality time as well.  That will help everyone’s stress.

Support groups can be helpful, but shouldn’t feel like more work.  In some cases counseling may also be an option. 

Don’t ignore your stress.  Your mind and body can only take so much.  Make certain you are taking care of yourself as well as your family.

Hard Decisions

August 5, 2008 at 8:43 am | In ADHD, Autism, Christian, God, PDD-NOS, Working mom, family, kids, motherhood, parenthood | 3 Comments

I really love LIFE.  It is ever changing and always eventful.  It is passionate and emotional.  Sometimes it is easy and fun, but other times it is more challenging, even devastating.  It really is a gift. 

Earlier this summer, my days were spent baking flat, pancake like things loaves of bread, and playing with my children.  However my summer changed a few weeks ago and it has become challenging, even hard.

Which brings me to hard decisions.  Life is full of hard decisions.  Some I know I’ve done the right thing, others I’m unsure, and then there are those things that I know I have done the WRONG thing.  I think about decisions that I have made with my kids.  Maybe sometimes I have done the wrong things, but that is OK.  I have learned from them.  My kids have learned from them.  Things don’t always work out, and they need to learn that.  They need to have some coping skills in place for when they are adults and they are making the hard decisions.

I’ve made decisions in my career.  If I had made other decisions I would be much higher on the payscale, but I can honestly say I have learned so much from the places I have been.

Right now I am making decisions within our community.  I believe strongly in volunteering and giving to your community.  I have been thrust into a position that I am not completely comfortable with.  I know that some of my actions may make me rather unpopular at the moment.  However I have been trusted to do what is right to the best of my knowledge.  I take that trust seriously. 

My decisions rarely affect only myself.

P.S.  Ok, now after I reread this I realized that in my last line I almost verbatim wrote what my friend, Judy, wrote about yesterday. “Very rarely do our mistakes, bad judgments, or close calls affect only us. “  So I reread her post and am feeling inspired by this verse that she included.

“So let’s not get tired of doing what is good.  At just the right time we will reap a harvest of blessings if we don’t give up.” (Galatians 6:9)

Mom Guilt, Realizing I Should Have Done Something About This Years Ago

July 23, 2008 at 8:41 am | In ADHD, Autism, Christian, God, PDD-NOS, family, kids, motherhood, parenthood, sensory processing dysfunction, teaching | 4 Comments

I have mentioned before that I am the mother of a very beautiful, smart, wonderful child that has PDD-NOS, or basically is on the autism spectrum. My son is very high functioning which is why he didn’t get diagnosed until he was going into third grade. We have been very blessed in our journey with him. I have always felt that God has been in control with him. God has put people in our lives that have really helped shape and mold my son into this amazing person that he is today.

Well I have posted about why I was taking my son to an OT (occupational therapist). Yesterday was our first evaluation. At the beginning the OT explained to me that my concerns about large motor are really a Physical Therapists area, but since I listed on the form that he has some writing issues and such she would like to go ahead and evaluate him. I let her, and of course we made another appointment for the physical therapist. Although I don’t have the final results she was able to tell me that his hand strength and development was 3-4 years behind his peers. We will start therapy next week. As a teacher my first question is “Since he is going into 5th grade is it too late to do much about this?” The answer wasn’t far from what I expected. I know that if kids are having handwriting issues by third grade if it isn’t fixed it probably won’t be. Yet she told me that she thought we could improve the strength which would definitely help.

Thinking about it I know we should have went to a PT instead of an OT, and certainly the doctor should have corrected my mistake. I am thankful that we both made mistakes. He will now get some of the help he needs.

Now there is some serious mama guilt going on here. I should have taken him in first grade to an outside OT, but I let the school OT evaluate him. The school OT said it was an ADHD issue, not an OT issue. I disagreed, but didn’t argue loudly enough. His teachers and I continued working with him (He has always been blessed with wonderful teachers.) At his evaluation for PDD the doctors did recommend OT services, but when I took it back to the school the OT disagreed. At that point I should have taken him to an outside service, but I didn’t (inject mama guilt here.)

Now there are two lessons I am learning from this. The first is ALWAYS advocate for what your child needs, and I don’t care if your child has a diagnosis or not. Most teachers want what is best for their students and are willing to do it. If you know your child needs something that he/she is not getting, then speak up! As a teacher I can only really advocate for a student while I am that child’s teacher, usually 1 year. As a parent, I am the life long expert on this child. God has entrusted this person to me, and I have to do my best. (Now I am saying what the child “needs” not “wants”. There is sometimes over-parenting happening and you need to evaluate what is going on. This is really another blog entry for a different day. :) )

The second thing that I am learning is forgiveness and trust. True guilt can be a good thing if it is forces an evaluation and brings change, realizing a mistake and trying to correct it. As mom’s we often suffer from “false” guilt. Guilt from trying to have perfect children, perfect mothering, and having our own agendas. Our children learn from watching us make mistakes. They learn and imitate our coping skills from watching us in different situations. I have done a lot of things right with my son, and God has led us in situations where I didn’t know what to do. Forgiving myself for what I don’t know or didn’t do, and trusting that God will put the people in place to help us in this journey is not easy. Yet it is something I am learning.

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