"Life as a Spectrum Mom"

Earlier this year my counselor told me I was sabotaging my writing. In a fit that would make my children proud, I thought, Oh yeah. I'll show you.

I am proud to present the book Life as a Spectrum Mom: The Ups, Downs, and Upside Downs of Parenting Autistic Kids. It's a series of essays, short stories, and laughable moments about my learning curve as a mom raising three kids on the spectrum. As far as style goes, think Erma Bombeck and Lisa Scottoline.

This is the first book in a series of books that will including such topics as transitions, routines, schools, tests, parent survival tips, and more. My goal is to expand the series to include the stories from other parents expounding on a portrait of their experiences. We all may be in a similar predicament, but our stories are as individual as our personalities.

To learn more about what Autism is like from a parent's perspective, click here: Life as a Spectrum Mom

Remembering The Whys

The last few months have been more than a bit overwhelming, to the point that I've had multiple doctors make sure that I was on anti-depressants or anxiety medicine just because of what they heard was going on with my kids.  I even had one doctor look at me and shake his head and say, "I honestly have no clue how you do it."  At times like this I recall to mind what a cousin with an autistic son once posted on Facebook, "I didn't know there was a choice."

But, with the help of a lot of Santas' little elves who are making a Christmas happen that seriously would not otherwise happen, I've been reminded again why I care so much about my kids (even on the beyond hard days). It took me six years to have Rose. Six years of tests, treatments, and tears (not including all the shots multiple times a day and all the various medication I had to take to get pregnant and stay pregnant).  I signed up to be a mom.  With all its glorious poopy diapers, vomit encrusted pillows, hugs, laughter and twinkling eyes.

Yesterday was an extremely difficult day for me. I've had insomnia the last several nights and I was dealing with a massive migraine, my ACL joint is out of whack for a week now, my own sensory overload, and I have to wait until the new year kicks off before I can see the chiropractor again about my collar bone being dislocated thanks to maxed out insurance. My kids were literally bouncing off the walls and each other. Then, as the kids were being corralled up to bed full of tears, screams and tantrums, some amazing people came by to make sure we were going to have a Christmas. And they weren't the only ones. Through the last few weeks I've had people take me aside to make sure that we were okay and that the kids would have something to open Christmas Day.  I even ran out of wrapping paper yesterday trying to wrap the two gifts we were able to get the kids ourselves. And by the end of the night we heard a knock on the door. I ran downstairs to find a roll of wrapping paper left by a friend and her family wishing us Happy Wrapping.

I sat down multiple times last night and cried. We are watched over. We are cared for. There are angels all around us. And its good to remember that I have three little angels with halos sometimes a skewed living right upstairs. I wanted them in my life and I went through hell to get them here. So like Bing Crosby in the movie White Christmas I started counting my blessings. Counting all the smiles, hugs, laughter and twinkling eyes that I've been blessed with over the last six and a half years. I wanted these children with all my heart, and I still do. They are my miracles, even when holidays mess with their routines and throw them out of sync.

And I'm grateful for all the wonderful friends, family, angels, and secret Santas in my life that make sure I remember the whys behind my life.

Difficulties Weighing the "Right" Choice

I am really struggling the last few days knowing what is the right thing to do for my children when it comes to schooling.  Sweet Rose's doctor diagnosed her with Sensory Processing Disorder two years ago.  My Cyprus is Moderate Functioning Autistic (still not sure what that really means) according to the test performed by the psychologists at the local school district. And now my Juniper is showing signs of Autism as well as Attention Deficit Hyperactivity Disorder (ADHD).

I just learned that a new charter school called Spectrum Academy has just opened in a town nearby that focuses on education for Autistic Children, Asperger's Syndrome, and their siblings. I've been trying to figure out if I should try and get Cyprus transferred over there for next year when he becomes (gasp) a kindergartner.

But that raises a lot of questions, some I have answered already, some I'm still trying to figure out.

One thing I have learned is that Charter schools are linked with the school district and as such are free. But if your child attends a Charter school they do not have access to buses, the parents bring the kids to school.  Usually I would have no problem with this as long as my child is getting the support he needs. However, my daughter currently goes to first grade at one school. Her brothers are/or will attend the special needs preschool sponsored by the school district. I'm already having issues getting my daughter to one school while figuring out how to get my sons on and off their bus at the needed times.   Now imagine sending Cyprus to a third school where I would have to drive him there at the exact same time I'm supposed to have Juniper on the bus on Rose on her way toward her school.  It's a bit mind boggling for me.

I've also learned that Charter schools tend to run on a lottery system. This is because there are a limited number of spaces open at the school. It also means that at some point in the Spring you submit your child's name into a list. Then names are drawn to determine who gets the opened spaces.  If you do not get accepted as part of the lottery then you resubmit your child's name the following year and hope. The thing that worries me is that this academy seems really tailored to meet the needs of spectrum children to help them learn: use of natural light, soothing colors painted on the wall, sensory objects allowed at the student's desk to help them remain calm, plus the services of occupational therapists, speech therapists, safe rooms when the child just needs to readjust themselves to be able to cope with others, and aides to help when tantrums arise. It sounds like a dream. . .if  they deal with Moderate Functioning Kids as well.

There are many questions plaguing my mind that I'm working to answer:

- The Autism school specializes in education for High Functioning Autism, but Cyprus is Moderate Functioning. I have to find out if they can work with him.
- I learned that the school district has Autism classes, but I don't know at which schools and I have heard that they only have them until your child reaches a certain age. So I have to talk to the school district to learn more of what options are available on their end.
- I've also learned of other Charter schools that focus on adjusting the education as need to fit the needs of your student. So if your particular child if advanced in Math beyond their grade level then they are given the excelled learning in Math, but if they struggle in Reading they work at the level they are.  So now I want to learn more about these other schools?  However, there is still the difficulties of getting them to and from school.

The final question is - What can I handle as their mother? I want to give my children the best chance at being their best selves, but at what cost?  If I'm so stressed that I can't cope well and get sick (as is my MO) then its harder for me to be able to be a good mom.  So at this young age, when they learn their best, which is more important - the right help or a sane mom?

Lots to learn and lots to pray about, but as this is a whole new field of information for me I thought it might be for others as well and wished to share. I hope this helps.  If anyone else out there knows more about Spectrum Academy or Odyssey Charter schools I would love to hear from you.  Also, if anyone know about what the school district has to offer I'd love to here from you.  Also, if you've found yourself in a similar situation I would love to hear how you decided on your choice.

Happy Learning!!!

The Lonely Cucumber

Kids with special needs often have difficulties in relation to food - sensitivities or aversions, etc.  When my kids were learning to eat I made my own baby food simple because it was less expensive and had less chemicals. At that age my kids ate sweet potatoes, peas, carrots, apricots, plums, and all sorts of other good stuff.  It was marvelous. Juniper would even come over, sit on my lap, and start eating my salads.  I loved it.

Then at the magic age of 2 1/2 that all changed. Suddenly, the kids stopped eating all the good stuff and all they would eat was mac 'n cheese (boxed that is), chicken nuggets & fries, pepperoni pizza, cheese quesadillas, grilled cheese sandwiches and peanut butter & jelly sandwiches.  For breakfast they would only eat cereal (dry on a plate, milk on the side in a cup).  I went bonkers. I tried making food look fun. I tried having the kids help me cook it. I tried persuasion and force.  Yeah. Not happening.

I talked to the kids doctor about it a few years ago when Cyprus had started this phase and she said that most kids go through that phase and that it can take an average of 72 times of trying to reintroduce the food before a kid will try it again (and that's for a 'normal' kid).  And because of their age and weight the doctor said "IF they want pizza, give them pizza because they need the fat at this stage.  Keep introducing the other foods, but mostly make sure they are getting the calories." I was hoping with Juniper's love of stealing my salads that he would bypass this phase entirely.  Unfortunately, this summer the food aversion phase once again kicked in.

While previously working with an occupational therapist for Rose she had us to food related playtime. We'd make up games and then get Rose to be blindfolded then she would mix flavors and textures and Rose would sniff, lick, and possibly eat them mostly.  Its amazing the power the mind has over food, because if I gave Rose the same food un-blindfolded she would gag, throw tantrums, and be 100% willing to starve herself for days if need be not to eat it.

So we live by multi-vitamins in the meantime to makeup for what they lack.  I still battle giving them foods that they once loved. Yesterday I picked a fresh cucumber from our garden. Today I sliced it up to go with my lunch and once again I included my children in on the bounty. Along with cucumber they had a grilled cheese sandwich and an apple. Once again the lonely cucumber remains solitary on the plate. Rose at least deemed to lick it for me before she tossed it aside.

Only 56 more times to go. 

On to more testing. . .

Today I took Juniper to the local school district to have him tested for their preschool program when he turns three in September.  He did fantastic on the cognitive when it came to matching similar pictures, until he got so focused on lining the pictures within the square just right and not so much on matching the pictures. Still he got really a high score, but when it came to anything cognitive related to language he only got a 1%.  All other emotion/social, adaptive, etc., he also showed delays. 

The amazing thing is I think this kid is fantastic, brilliant, and funny.  And here I thought that, compared to his siblings at that age, he is extremely advanced. I'm just glad for the explanation of what his needs are and the future help we will get to help him.   Now we just need to get his fine & gross motor skills tested and then they'll be able to tell me what he services he qualifies for.

So my advice is that it is better to know now then to wait and find out later when its harder for the kids to catch up.  If you have any questions about how your child fares it is best to have him/her tested. Then they can be ahead of the game instead of feeling like they're falling behind.   You can find out if there are any programs or testing through your local school district as well as doing an online search for programs similar to Kids on the Move that work with children ages 0-3 with health issues, occupational therapy, speech therapy and developmental delays.

The Order of Life

One of the aspects of Autism and Sensory Processing Disorder that I'm still struggling to come to grips with is the order that things must happen to make sense. For me I just buckle down and do it, even if it means bouncing around from task to task. Eventually they all get done.

 

Now I'm not saying that I do it right. Everyone can do it their own way as long as it gets done. Just ask my stepsons or my husband about whether or not I make boxed Mac 'n Cheese the correct way. They all make it differently and look at me oddly when I do it my way (granted I refuse to eat the stuff).

 

Anyway, many kids with SPD and/or Autism like to organize things/activities in ways that make sense to them.  For example, Cyprus will line up anything with wheels until it stretches from one end of the room to another. The only time he really mixes things up is when he stacks the side-by-side instead of bumper to bumper.   When Kids on the Move came to our house to teach me how to work/play with him they suggested I mix things up to help him learn to see things in new ways (and possibly to learn to cope when things doing go the way you planned).  Unfortunately, I admittedly don't do it enough since they transitioned him to preschool at age 3.

 

Another example with both Rose and Cyprus is that they have issues with food. If its not the right texture, the right look, or if its touching something else they won't eat it. This makes meal times quite a struggle for me. The only things they will eat on a consistent basis are pepperoni pizza, grilled cheese sandwich, chicken nuggets and fries, pb&j, and cheese quesadillas. No, that is not what I always give them. We still feed them what we are eating, but 99 times out of 100 they would rather starve then eat it.  Good thing for multi-vitamins.   What's really annoying to me is that they used to eat all sorts of good stuff until they hit about two and half/three years of age. Rose would eat an entire avocado by herself. She would eat peas, carrots, potatoes that weren't French fries, etc. It was lovely.  But at the same age for both Cyprus and Rose they stopped eating.  I can't even give them grilled chicken or breaded chicken strips. It has to be a nugget, dinosaur, Mickey Mouse ears type of chicken (which personally after seeing Jamie Oliver's food revolution just grosses me out).

 

The other night I was tired and new that the kids wouldn't eat chicken puffs, even though I put some on their plate, so I also gave them one slice of Kraft Singles, some canned mandarin oranges, some mixed veggies and some crackers. Rose refused to eat the cheese (which is usually something she loves) because there was a crack in it and because a corner of it touched just barely the mixed veggies.  Oh no!  Her world officially came to an end.

 

I honestly am still trying to learn how to cope with these type of tantrums. To me they don't make sense, but I know for Cyprus and Rose its the only thing that does make sense. 

 

Here are a list of some of the other things that have a set pattern to my kids:

 

• A drink must 3 ice cubes, no more no less or the drink becomes undrinkable
• In order to brush Rose's hair I must use the "heart brush" that is from My Little Ponies, otherwise she must scream the entire event of brushing to survive (I have to admit though she has naturally curly hair and thus lots of knots)
• You cannot change your shirt first. Pants and underwear must always precede changing the shirt and if Mommy dares to mess it up then the child must take the shirt off until things are put on in proper order.
• A child cannot sing a bedtime song or read a bedtime story. "I'm just a little girl."
• Must have the one odd looking chair at the table and the world ends if someone else took it.
• Food cannot be touching.
• Will not wipe after going to the bathroom for fear of getting stuff on hands.
• Will not sit next to Mom when eating a salad for fear that it will contaminate them.
• If they don't get their way than it is officially the end of the world and by George I will let everyone know it.

But there are some inventive ideas they come up with because they look at the world differently.

• Rose is fantastic at science because of her natural curiosity.
• Cyprus took apart my laptop keyboard when he was two.
• Both kids love to experiment to see how things work (and it is rubbing off on their little brother  which is a good thing).
• They love to learn and to run.
• Rose has no fear (other than not getting her way) and is glad to say/wave hi to everyone.

It is often hard for me to deal with their unwillingness to bend, especially if I'm on a time crunch. I struggle to find the balance of enhancing what they're good at with teaching them how to cope when things don't go their way.  I love how their mind works most of the time. I'm still working on the rest. But no matter what they are all my little miracles and I'm glad that I'm their Mother. I'm pretty sure that I'm learning more from them than they are from me.

Potty Training is Not for the Impatient

Potty training is no fun, even on a good day, and after potty training Rose (which took over a year), I was not looking forward to potty training Cyprus. Luckily, the local school district had a parent class a few months ago on how to potty train special needs kids. Man how I wish I had learned this stuff a long time ago.


The problem is that I'm not a very patient person, but with two special needs kids that is exactly what you need to be. With Rose I had tried the method of putting her on the potty every half an our and rewarding her with stickers. Yeah, that ended up with both of us in tears most of the time.


When I took the potty training class the first thing they suggested was to just take notes for a week. I honestly did a double take. Why would I need to take notes for teaching my kids how to go in the potty? The instructor then explained that by taking a week before starting training to write down every time you child pees/poops in their diaper from the time they get up to the time they go to bed, then you can identify if their body has created its own routine. Usually this works for special needs kids because they can't usually identify the signals for when they need to go.


I went ahead and tried it for a week on both of my boys - Cyprus because he's getting old (just kidding) and Juniper because he's obsessed with the potty.  I was going to be an awesome Mom, figure out their schedules and then get them both potty trained at once.


(Pause for laughter to subside.)


I talked it over with their pediatrician and he said not to worry about Juniper as very few boys were ready at his age. And with Cyprus's Autism he thought it best to give all my focus to him.  So I swallowed my pride and just focused on Cyprus. By monitoring his schedule I soon discovered a semi-routine that his body followed. So I started putting him on the potty 15 minutes before he usually went, usually after mealtime. And it worked.....until life got in the way.  Don't you hate that.  School, illnesses, fatigue, etc. etc. made it hard for Mommy to make anything into a routine.


So for once, I am looking forward to school being over so that I can focus the next three months on his routine. Technically he still has one more year of special needs preschool, and the teachers are awesome at trying to help stick to his routine. However, we haven't been consistent enough at home for Cyprus to connect that there is even a routine.   So that's my goal. Help my son connect the idea with going potty in the potty as a regular occurrence.


Much prayers for success appreciated.  Then once school starts again I can work with Juniper, because he is still way to obsessed with the potty.  Here's looking forward to the days of no more diapers/pull-ups. Though you seem so far away I have a glimmer of hope that you are coming nearer.