Imagine this, you plan a trip from New York City to South Carolina to enjoy a week in a beautiful beach house on the beautiful Atlantic Ocean where you will relax, take your brand new boat out on the water, and enjoy the finest seafood Charleston has to offer. You get all packed up, close up the house, get the family in the car and head out on the open highway. You get about half way there when you suddenly realize that you have left your only set of keys to the beach house on the kitchen table at home. You pull over in a panic to think for a minute what you are going to do. At first you blame your spouse, “how could you let me forget”, then you get angry with yourself, “what was I thinking, or why wasn’t I thinking”, then you begin to panic, “what will we do”. No matter what you say or think, what is done is done and there isn’t any way to go back in time to change it, you must move forward. At this point you have a few choices, turn around and go back, call a lock smith when you get there and pay to have them let you in the house, or ask a neighbor from New York to overnight the key to you in South Carolina. You will most likely talk it through with your spouse and decide what the best and most logical solution would be.
Obviously today’s post is not all about traveling to the beach, I just wanted to give you an idea of planning, disappointment, and regrouping that you could relate to before I tell you what is really on my mind….
Today I had a meeting at Jaxon’s school. I try to keep in touch with his teacher as much as possible throughout each quarter so I know how he is doing/progressing, etc. Last Friday we talked about a few issues that Jaxon has been having (here I am thinking everything is great and wonderful…and it’s not). We decided we needed to hold a more “formal”meeting which included the school psychologist, the ESE specialist, the teacher, and myself (this took place today). Through the meeting I could feel myself relating back to the story above…pulling away from the house, realizing I forgot something, blaming everyone, blaming myself, and then pulling at strings to determine what to do next. Raising a child with high functioning autism is not something I ever imagined I would be doing, but now that I am doing it I want to do it right…is there such a thing?
It would appear that Jaxon is struggling more than I could have imagined. The good news is that he has the ability to learn from the same curriculum that his peers are learning from, and yes, he is able to function in a mainstream classroom however, he is struggling, and in some instances he is barely hanging on with a thread. As the year has progressed, so have the standards and expectations. So what am I to do? Well, today I agreed to let the school psychologist do some testing and evaluating so we will know exactly where we stand with his cognition level and such. I am terrified of what we may find out, but I am optimistic that maybe Jaxon will surprise everyone and do well on this evaluation. Whatever the outcome might be, at least we will be able to set forth a plan and move in a direction that will benefit Jaxon and his educational needs.
I will admit that when I got up today and prepared to go to this meeting I had no idea what would be presented to me. During the meeting I had a wide range of emotions running all throughout my mind, yet I kept thinking about this memory I have …this little boy, barely 3 years old, unable to talk, unable to communicate his needs and wants, so desperately wanting someone to understand what he was feeling. I remember how I told him every day that I would always be there for him, and that I would never give up on him.
So today, even though I wanted to just walk away and not deal with what I know is going to be yet another long journey full of bumps and bruises, I focused my mind on that little boy and those promises I made to him a few years ago!
Man, finding “healthy” candy is hard to do! Today I was searching and searching for soft peppermint candy that doesn’t contain any dye in it….never did find any. I am going to try getting Jaxon some organic hard peppermint candy to suck on during the day (if his teacher will let him) to see if that will help him with his concentration in school. I wrote a blog a while back about the benefits of peppermint, I even told his teacher about my findings but it never went any further than that. Lately, I have noticed that if Jaxon has a little peppermint while doing his homework he has an easier time with his math problems.
Well, in my search for peppermint I did come across a few interesting websites that I thought I would share with y’all.
Pure Fun is a company that sells candy that ISN’T full
of all the stuff I am trying to avoid! Finally a site where I can look for candy that doesn’t contain artificial flavors, artificial colors, preservatives, gluten, dairy, casein, etc.!
Natural Candy Store is a website that also sells a “healthier”option of candy. You can find gluten free, dye free, Vegan, Kosher, Feingold, and other sorts of diet options here.
P.S. If you know of a company that makes dye-free soft peppermints, please send me the info!!
You can read more about my Focus/concentration blog here.
My husband and I have caught a lot of heat for my decision to stay at home with the boys. When I was finishing school it wasn’t quite so bad because I was still a “student” and not just a “stay at home” mom (or as other see it, a lazy, sit at home and watch TV while the kids play by themselves mom). Ok, so now that you know how I feel about this subject we can move on…
Well, today while I could have been earning an hourly wage (YES, I do wish that I could find the perfect job where I could stay at home with the kids, at least part time, and use my education as well, but for right now I haven’t gotten any opportunities) I sat at the computer determined to find out why Jaxon is struggling with his reading and writing at school. I knew that there must be a reason and that if I could find the reason I could surely find the solution!
Well, ladies and gentlemen, I did just that (or at least I am crossing every toe and finger on my body that I did) and now I am waiting for confirmation from his doctor that we can begin testing and come up with treatment plan. I’m sure this will involve 1, maybe 2 trips to St. Louis, but if the end results benefits Jaxon than sign me up! I don’t want to spoil the details just yet, but please stay posted, if this works, I am going to write up a research proposal, plan, and results!
See, its days like this when I could tell all of the nay-sayers out there who look down at my decisions and tell them where to shove it! I am making a difference in Jaxon’s present and future and that is worth more than any hourly wage could ever do for my family.
The past few days have been rough days for both Jaxon and myself. We took an awesome family trip this weekend and came home to a couple of “unsatisfactory” assignments for me to sign in his back pack. I normally always look through his back pack on Friday afternoon but I was so busy packing and cleaning and getting ready for the trip (and I knew it was a 4-day weekend) that I let it slide until Sunday. Well, when I saw those assignments my heart sank. I didn’t know what to think, “was he just having a bad week”, “is he regressing”, “what does this mean”. I decided to sit down and work with him on those same assignments and have him do them over…for me. It is clear that there is something going on with his auditory processing? Until I can talk with his teacher at the end of the week I won’t fully understand what is going on, but for me, it’s just another step along this journey….we will make it through this.
Something that has always helped me to get through these setbacks is a poem I was introduced to along time ago when Jaxon was first diagnosed. I’d like to share it with you, I’m sure most of you have read it, but if not…may it bring you the same peace it brings me during the darker times.
WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley.
All rights reserved
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I feel like I have so much information going through my mind right now and I don't know where or how to begin processing it, is this possibly how my little guy feels every single day at school?
In anyone out there has had success in dealing with APD, please send me some suggestions, I am a mother who believes in the advice of other mothers.
Every day when I write, my children are on my mind. Whether I am telling a funny story about them, ranting about how difficult they can be, or bragging about something amazing they have done, they are on my mind and in my heart.
Today my post is dedicated to my son Jaxon; I can’t even find the words to describe how much he means to me! Jaxon hasn’t had an “easy life” as most children “should”. He has struggled, fought, and beat nearly every obstacle put in front of him. It amazes me how strong this little boy with the BIGGEST heart is. Today I tell you this story because I feel like it might just remind a few of you that although life hands you lemons, if you work hard enough you can turn them into lemonade (or margaritas if you wish).
Jaxon and I have always shared a very special bond; before he showed signs of autism he was a normal developing child who had the heart twice the size of his chest. Everyone talked about how sweet, outgoing, and loving he was. Jaxon was always smiling and laughing and taking the world on one day at a time. Since my husband is military he wasn’t always home so that offered even more one on one time for Jaxon and I (I was also a stay at home mom/student). Jaxon lost a part of that sensitivity as his autism developed but over time, it has come back!
Fast forward to last night; with every pregnancy I have days of horrible allergies that bring on horrible bloody noses. I am used to them, I deal with them. Well, last night (at bedtime) Jaxon walked into my room and saw me sitting there with blood pouring from my nose. He caught a glimpse of my husband running in with an ice pack and immediately got on the bed next to me. Brent asked Jaxon to hold the ice on my head while he got some more tissues. Jaxon was amazing, I could tell that he was scared of the blood, but he sat there and held the ice and rubbed my back telling me “it will be ok mom, just let it all come out, don’t try to blow your nose, just sit back”. I had tears in my eyes, not because of the bloody nose but because at that moment, I realized, that my little boy actually understood what was happening and how to fix it. I have always feared that Jaxon will never be able to show compassion (sympathy, but not compassion) to others and understand how to react in specific situations. It was in that moment that I also realized we still share a very strong bond which we began establishing the first time I held him in my arms.
So, if you are a mother of a young child with autism, I say this to you…don’t give up, fight for (and sometimes with) your child; recover happens, it is possible, but you are the only one who can make it happen.
Learn more about Jaxon's journey through autism below.
A few weeks ago we drove from Florida to Missouri to see the doctor who used to be “Jaxon’s doctor” but is now our “family doctor” for checkups. I have been having crazy morning sickness…all day and night, Carter was acting like a maniac (I suspected yeast), Jaxon was actually doing rather well, and Brent was having digestion problems. Anyway, we made our appointments and drove 16 hours to Chesterfield, MO.
I really wasn't nervous about these appointments like I had been at various times in the past. I knew that Jaxon was doing well and that there probably wasn’t much she needed or could do to improve the minor things that we were dealing with. For example, he is still having a hard time writing sentences from memory, having a little bit of a hard time with some of the math concepts they have working on this year, but over all…he is reading, writing, and doing the majority of the required math….I was really pleased with this!
The day went very smooth, a programmed bottle for me (to offset my high progesterone level), vitamins and folate for me, some liquid nystatin and a Candida bottle for Carter (did I not say that I suspected yeast?), a whole lot of things for Brent…oregano, digestive enzyme, programmed bottle to digest fats, multivitamin, and a couple other things (he was the last member of the family to start a “program” so it will take him a little longer to balance out). And then it was Jaxon’s turn…
About a month ago we tried Jaxon on Focalin XR, it is used for ADHD and is supposed to help children focus and concentrate at school. Since those were the two areas we were having the most difficult time with I decided to try it out. WOW, what a difference it made, he was (and still is) doing amazing on it. Anyway, back to his appointment…the doctor tested EVERYTHING under the sun, digestion = fine, pathways = fine, minerals = fine, vitamins = fine, toxins = none, colors, chemicals, dyes = none! Could this be possible…has my child’s body learned how to eliminate, process, and manage on its own?? It would appear so…we left the office with the smallest protocol we have ever had, 1 prescription and ZERO supplements. I was very nervous about this, it was like I had just healed from a broken leg and she took my crutch away.
It has been almost a month since our appointment and I am happy to report that Jaxon is doing very well (off of his 4 year protocol) and still taking 1 Focalin XR per day PERIOD. I remember that I was told a few years ago by a doctor at the military clinic that my child would most likely be considered “inaccurately diagnosed with ASD” and be re-diagnosed with ADHD, but I never put much thought into that. I do not believe for a minute that my child was “inaccurately diagnosed”, he was very much under the umbrella of the Autism Spectrum, had all the signs, symptoms, and behaviors. However, I believe that by doing all the work we (and the doctor) did, his body has been healed and he is now at a point in which his body can finally do what it is supposed to. I do not believe we “took the autism away” I just believe that we are in a state of recovery and have to wait and see how long his body will continue to follow this path. I know that there is still some damage (memory, learning, etc.) but for the most part, Jaxon has overcome something that I never imagined he would. We celebrated all season long and will continue to celebrate and hope that many many more children will find a way to recover as well.
**Our entire family uses a machine called an IQS machine, it is the only machine that has worked for us and we have tried different ones. I do not sponsor or support any other equipment our doctors office uses, our success has come strictly from the IQS and its associated computer program**
Recently, a friend of ours invited Jaxon to the local children’s art studio to paint. I really didn’t even give it a second thought before saying yes. As we were on our way to the art studio I started to get nervous. Jaxon has painted at home, but mostly just more abstract style, paint all different colors all over the paper type of painting; he hadn’t ever actually painted a ceramic item…especially one we had to pay for. I decided that there is a first time for everything…so let’s paint!
Jaxon did a fabulous job! He was focused, he was excited, and he worked very hard to get his painting absolutely perfect. Of course he chose a spooky skull…and then painted it red and blue (bringing back some Grateful Dead memories) but I bit my tongue, and let him work his magic! Being a parent to a special needs child has taught me many things, but patience is probably one of the most important skills I have learned from Jaxon.
We have now made painting a weekly activity in our house. Jaxon painted a Gnome a few weeks ago for his Uncle as a Christmas gift…it was his idea and the paint colors were completely his choice. Painting seems to be bringing out a more imaginative, creative side of Jaxon. We have also been painting little pumpkins at home; this allows Carter to join in without having to pay out a lot of money. I am so glad we dove into this new activity. After doing some research (for that Google degree) I found that a lot of children with autism (Autism and Art) (and other special needs) are using art as a form of therapy (Art Therapy). I will be searching like crazy for as many art activities that combine everyday first-grade skills in them for Jaxon from now on. My recommendation is that you “get creative” with your children and let them bring out their own artistic abilities…it is worth it, trust me!
Today I thought I would talk a little bit about pressure points. I have suffered from migraines for so long that I can’t remember a time when I didn’t suffer from them! I have tried a ton of different medications but honestly, the best and “healthiest” form of relief I have found is acupressure and massage. It seems like the more medication I try the worse I feel. Don’t get me wrong, sometimes medication is absolutely necessary to kick a bad migraine, but if I catch it in time, I can use various pressure points and head to my massage therapist and feel better quickly!
This weekend we took the boys down to Disney World for the day. Let’s just say that they day did not start out so well. Jaxon was in a “mood”,I have no idea what started it or why, but he just wasn’t feeling like himself. It seems like he has been having days here and there where he doesn’t want to listen and then when he gets in trouble he is very hard on himself… which in turn leads to even more of a breakdown. Anyway, early afternoon we were sitting at Mama Melrose (they offer gluten free options) for lunch and he just could not get control of himself. He was misbehaving…getting in trouble…then acting out because he got in trouble…getting in trouble again…etc. All of a sudden it kind of just hit me...and I decided to have him come and sit on my lap and I started giving him a massage. I knew that the top of the head was a good point for depression/anxiety/stress so I started there, then I moved on to his back shoulders, wrists, and legs. It worked like magic people…seriously…I was in shock, I’m not even sure why I was in shock because I know in the back of my head how therapeutic pressure ca be.
So, do me a favor, if you have a child with special needs whether it be Autism, ADHD, Asperger’s, etc. check out some basic acupressur points and try using them (if your child will let you touch them, I know some are very sensitive to that) when they are having an issue with behavior, whether it be emotional, physical, or both, I am interested to know if this will work well for others!
When Jaxon was diagnosed with Autism we were thrown into a tailspin. I wanted to do anything and everything to help him “get better”. I didn’t know what the right path would be so I followed the advice of doctors and started with traditional medicine.
Speech therapy and occupational therapies were added to our weekly schedule but he did not qualify for ABA therapy. Of course I started doing my own research, reading, talking, anything information I could get my hands on was of interest to me. When we didn’t’ see any progress after a couple months on the “traditional path” I decided to take things in my own direction.
We took Jaxon to a DAN doctor and had some testing and evaluating done. We were in the process of moving so we didn’t completely follow through with everything with this doctor and began looking for a doctor near our new location. A friend recommended a new DAN doctor to us so we gave it a try. I wasn’t completely comfortable with this doctor either but he definitely had a better “plan” than anyone to this point so we followed his lead.
However, things didn’t really improve on this path (if I remember correctly they got a little worse) so once again we started looking for a new path to follow. When I was least expecting it, I was given the name and number to yet another (yes, another! I know, I was thinking the same things myself) DAN doctor and once again decided that hopefully “the third time is a charm” and wouldn’t you know…SUCCESS!
Our first appointment was a blur, lots and lots of information and questions. I was about 6 months pregnant so I was already in “pregnancy brain mode” but Brent was just as lost as I was! We just sat back, listened, asked a lot of questions, and let someone else take the driver’s seat in our child’s road to healing for once, it was hard to let go of the wheel (very very hard) but for some reason, I just had this feeling that what we were doing was right!
Within three weeks of starting Jaxon’s treatment plan he finally began talking. We would take a step or two backward followed by leaps and bounds forwards. For the first time since Jaxon was diagnosed I had a glimpse of hope that things were going to be ok. I won’t get into the details of his treatment on this post, I will leave that for another post, but I will leave you with a few thoughts…
*If you don’t have a good feeling about a doctor or treatment plan there is probably a reason for it, listen to your gut, follow your heart, you are your child’s only advocate!
*Don’t ever give up, keep looking until you find the doctor that understands your child and his/hers needs and is willing to go the distance to help them…they are out there, I promise!
*Take a moment here and there to sit back and let it all absorb. Raising a child with Autism is not an easy thing to do but it is a job that you have been given and it is up to you to do the best job possible.
*If you are feeling overwhelmed, look for a friend or a support group. Talking with other parents who understand what you are going through can make a world of difference.
As a mother of three, I feel like I am getting a second degree in "google researching". I love my children more than life itself but sometimes the nights get longer than the days, and mommy feels a little overwhelmed! However, life is supposed to be about the journey so I will buckle up and enjoy the ride.