Kindergarten Shots

Having seen all the talk about the flu vaccine, the swine flu scare and such I feel the need to share a true story with you. I heard this story firsthand from the little boy's mother while at the grocery story last Fall.  I think it is an important story to share if for no other reason than to make you think.  For me, her story has made me think about every vaccine that every person considers getting.

Last Fall I was shopping at our local natural/organic grocery story when I met this amazing mom.  I was in the baking aisle doing the usual of picking up boxes and reading labels to see what I could take home for Aleks.  I noticed a mother with a little boy around 8 doing the same thing yet seeming really frustrated and lost.  I asked her if I could help.  She told me that she was just started the GFCF diet for her son and was overwhelmed.  We started talking about the diet and I shared with her our success with it.  She then asked about Aleks, her autism and doctor.  I told her all about Dr. Spore and how much we loved her and believed in the biomedical therapies. I gave her one of our doctor's business cards and told her to think about calling.   She then got teary eyed and told me what a rough few years it had been.  What she told me next shocked me and I will never forget what she shared.  

The mother told me that the little boy I saw with autism wasn't always autistic.  In fact he was a typical child until one trip to the doctor right before kindergarten.  She said she took him in for his Kindergarten shots and by the next morning he was gone.  He had gotten all his shots for Kindergarten and in the process she lost her little boy.  The happy go lucky, 'typical' little boy disappeared within 24 hours of receiving his vaccines.  The mother desperately called their pediatrician to tell them something was wrong.  They kept telling her that nothing was wrong and he was fine and just tired from the vaccines.  She kept calling, for weeks.  Same answer or lack of answers.  No doctor would every tell her that her son had a vaccine injury.  It was unheard of, a little boy becoming autistic at five.  The mother told me that their doctor tried to convince them that he had been autistic before the shots and she just didn't realize it.  As she told me, she was the mother of four and she would have KNOWN if he would have been autistic.  I believe her.

The woman had no idea that I hosted a radio show for a living.  She didn't know anything except for the fact that I was the mom of a little girl with autism who believes that there is hope.  I don't know what has happened since last Fall.  I do know that my doctor's assistant told me they got a phone call that afternoon from a mom who met a 'Melissa' in the grocery store and wanted to make an appointment.  The woman was sitting in the grocery store parking lot when she called them.  I love how God puts people in our paths for a reason.  

Blessings-

Melissa

The Birthday Party

                         It feels like this past month has been a whirlwind of activity.  We got back from 'Spring Break' and dove into the usual school, therapy and Aleks 4th birthday!  I kept going back and forth between a party with a lot of her school friends and something smaller.  For an autistic child, birthdays can be very upsetting.  For example; for Aleks' first two birthdays we had big pool (lived in Florida )parties with lots of friends.  She loved the parties and loved the attention.  Then a year ago it was all different.  She wasn't making eye contact and ran screaming when we started to sing 'Happy Birthday'.  A year ago she was hiding in a corner, screaming and holding her ears.  I was in shock and totally confused.  At this point we had no idea that it was autism and this can be typical behavior.  Now fast forward a year and you can understand my birthday party dilemma.

I knew that she was doing exceptionally well in school and with her therapies.  She had gone from one or two word answers to sentences and having conversations.  She loved her friends at school and really wanted a party.  Yet, could she handle it or would it be too much?  It is amazing how God works everything out.  Planning our Disney vacation was extensive and I just never got her school friends party done.  Her birthday was only a week after we got back from Disney.  A few days after we got back I started thinking about what she really wanted and I knew what to do.  We have some neighbors/friends that we are close to.  Aleks calls their 3 kids her 'brothers and sister.'  When I thought of a party it just seemed perfect to have her 'MN family' for a family party.  That is what we did and it was PERFECT.  The amazing miracle is that she sat at the table, took in all the attention and loved having everyone sing Happy Birthday to her.  I made a GFCFSFRFEFYF chocolate cake with fudge icing and it was also a huge hit.  What an amazing day of miracles for us and for her.  

Thank you Jesus.

xo

Melissa

Visiting Disney World With Autism

Going to Disney World with Aleks was amazing!  It was her first real trip to Disney and Disney made it a pleasure.  I had heard that Disney really takes extra care to help children and families with autism and they really do!  This was our first family vacation since Aleks was diagnosed with autism and started her biomedical therapies and special diet.  I have to say that I was nervous about how she would do with all the stimulation and just changes to her schedule.  I was also  nervous about what she would be able to eat and if the 'special pass' from Disney would really work.  

We stayed in a one bedroom suite at Disney's Animal Kingdom Lodge.  We originally had a studio suite (Queen bed with a small refrigerator and microwave and a pull-out couch) booked, but after getting there we soon realized that without having a separate bedroom she would freak out and it wouldn't work.  She also was none to willing to sleep on a pull out couch.  For those of you without an autism link, this is due to it being different which equals scary to a child with ASD. This is not about her being a diva!  Despite the extra money, we knew that if we didn't fix the room issue it would add to her stress and ours.  It turned out to be the best decision we could have made.  The room looked out at the animals and was very quiet.  That was a real blessing.  The other blessing was that having the animals around calmed her.  Also the room had a full kitchen which allowed us to make her breakfast every morning.  If you didn't hear it on my show, I took 2 pounds of frozen bacon, 1 pound of frozen sausage, a bag of frozen pancakes and a bag of frozen muffins in my suitcase.  This plus we shipped crackers, almond butter and strawberry jam to FL before we arrived!  

We were at WDW for 3 nights, and went to the parks for two days.  We spent the first day that we flew in at the AK Lodge pool and just hanging out at Animal Kingdom Lodge.  We then took her to the Magic Kingdom for part of day 1, then the afternoon at the pool then went over to the Animal Kingdom and did one of their last safari rides.  It was a perfect first day and not to overwhelming.  For the second day we went to the MGM Studios.  It was wonderful!  We saw The Little Mermaid Show (heads up it's dark and Ursula is a little scary) and saw the live Playhouse Disney show.  If your child watches Disney in the morning they will LOVE this!!  The shows were great and she was just a regular kid seeing all her favorite characters.  We also let her get some energy out at the 'Honey I Shrunk the Kids' play area.  Great place to let them unwind.  We ended the day at the hotel pool and just had a fabulous time.  

Couple of things you may not know about Disney and how they really help families with autism.  First, tell them that you need a quiet room and why.  They will be more than willing to help.  Second, make sure you get a 'Guest Assistance Card'.  At the Magic Kingdom you go into City Hall (don't go to Guest Services outside the entrance of the park, instead go inside and go directly to City Hall) and tell them you have an autistic child and need to get a GAC.  Make sure you have a letter from you doctor stating that your child has autism and could benefit from the card.  The GAC allows you to bypass the long lines and really helped our daughter enjoy the trip. When you get to a ride, find the Disney cast member at the beginning of the lines and they'll tell you where to go.    Next, if you're on a special diet Disney will help.  All the restaurants (quick service and sit down) will accommodate you, just talk to the manager.  At the Magic Kingdom we were able to get Aleks 'allergy fries' which  were GFCF baked and not mixed with other food.  At the AK we were able to get her a 100% ground beef hamburger and GFCF fries that were fried in a separate oil.  The food service managers were wonderful!!  

A big thank you to everyone at Disney for making an autistic little girl's Disney dreams come true.  Thank you to Robert at the Animal Kingdom for helping us with our room.  Thank you to Carol at the AK Mara Restaurant for being so kind, caring and accommodating.  Thank you to all the Magic Kingdom cast members for their help and caring.  Thank you too to Ron, our bus driver at the hotel who made sure Aleks was safe and having a good time.  Also, our friends Rob and Jim who made the trip extra special.  It may not seem like a lot to you all, but to us you made Disney possible for a little girl with a very big dream.

Blessings & Pixie Dust-

Melissa

P.S.  Earplugs were a life saver and provided a little quieter and calmer experience for Aleks.  Get the waterproof ones, put them in the morning and then you can leave them in all day even during swimming!

Potty Training at Last!! Hurray!!

For any parent potty training is a challenge.  For us, parents of ASD children, potty training can be downright difficult, hair pulling and just plain awful at times.  Before we knew that Aleks was on the spectrum, we thought she would be potty trained sometime after her second birthday.  Then came her third birthday and we thought for sure that this is it!  Then came the autism diagnosis and we just prayed that potty training would eventually happen.  We thought last August that we might be close.  She went on the toilet, told us she had to go, had a great day wearing panties then kaput she was done with it.  Seriously, done!  She wanted nothing to do with going the bathroom and would actually freak out if we suggested it.  

This past fall had its ups and downs with potty training.  Some days she would go for her teachers at school.  Other days she would have a wet Pull Up.  We were sending her to school with panties and a Pull Up over them.  It was suggested that this would help her to recognize when she was wet and would help avoid accidents by having the Pull-Up as a backup.  The good news is that she would be so excited when she went at school and got a sticker for going.  We were also doing the stickers, reading the 'potty' book and rewarding her with a sticker on her potty progress chart here at home.  We also tried pictures to explain the process and were setting the timer as a reminder.  It was a sloooow process.  

Finally, last Sunday I had an epiphany.  All of her teachers and therapists were telling us how smart she is.  They were telling me that she understands and is capable of so much more than even we all know.  So I decided that if this is true and I believe it is, then wearing a Pull Up was just giving her the excuse to go in her panties/Pull Up combo.  So on Sunday, I told her no more Pull Ups and that she was going to wear panties today and go on the toilet.  She still wasn't telling me when she had to go so I would set a small timer, put it on the coffee table and when it went off we would head to the bathroom.  What I found out is that she can hold it a long time and is capable of being potty trained.  In fact it's been a week now and we've had just a couple of accidents.  She still isn't telling us when she has to go, but she also is willing to go on the toilet when she has to and understands the premise.  She's going to school dry, coming home dry and using the toilet at school as well.  Even today she went after her gym class at the gym!  

Potty training is not something I ever thought I would openly talk about like this.  It's also not something that I would have thought would be such a celebration and prayer laden activity.  For some children it's just a right of passage, but for our daughter with autism it is another miracle and huge developmental accomplishment.  It is huge in our world and in hers.  I didn't know if we would be here by her 4th birthday (March 27th) but I thank God that we are.  It just shows me that she is capable of so much and has come so far.

Blessings-

Melissa

To ABA or HBOT or Not?

Are we missing it by not having Aleks in ABA therapy?  Should we also be trying HBOT?  

It has been several months since we found out that Aleks has autism.  We jumped into the diet and supplements and are thrilled with the results!  We also dove into working with our DAN! doctor, ST and OT plus have Aleks in a special preschool with an amazing team of teachers. What I am wondering now, is are we doing enough?  Aleks will be 4 in a month and we are questioning ABA and HBOT because it keeps coming up.  I believe in God's bread crumbs and am just wondering if these are part of our crumbs to follow and what we should be doing about it.  

I talked to one former ABA teacher who said that it's not for everyone and who was not a fan of the 40 hours a week.  Honestly, I am not willing to cancel Aleks' school, OT & ST to get her into the 40 hours of ABA that some say are recommended.  I am willing to do half of that in addition to everything else, but my gut says for her the 40 hours isn't right.  I've been surprised at the few outspoken parents who tell me that it's not worth it if I don't do the 40 hours and that I am cheating her by not doing ABA.   We honestly couldn't have handled it before now.  Even now and with TEFRA here in MN the cost for us will be outrageous.  We are willing to do all we can for her, but is ABA the right fit?  How do we know if it's right for her?  Also, we have the opportunity to try HBOT.  Our DAN! doctor in Stillwater is one of the few around here who offers the oxygen chamber.  We are still researching HBOT at this time to try and figure it out as well.

In the short time that we've been in this journey I feel like we've come a long way.  The problem is that it is a journey and we have to much further to go.  If you have any suggestions, thoughts or just insight please post a comment and let me know.  Thank you!

Blessings-

xo

Melissa

Follow the Bread Crumbs

I just finished working my radio station's annual radiothon to benefit children here in the Twin Cities.  We raise money for two very special organizations that help children with cancer and disabilities.  As I was interviewing different parents I was reminded of one very special mother that I had met last year.  Her name is Theresa Lao.  She had two little boys with a condition that caused their skin to shed off of their bodies.  When I met her there was no cure for this condition known as EB.  Yet, she continued fighting and petitioning for her sons and finally found Dr. Waggoner at the U of M Fairview Children's Hospital who was willing to try to find a cure.  She moved her two sons out to MN from NJ and lived in a hotel so that they could be part of a medical trial that just might work.

One of my questions to her was this, "How did you know the next 'right' thing to do for your children...How did you know what your next step would be?"  Her answer was simple, "God always gives me the bread crumbs and I just have to follow them."  She was referring to the Hansel and Gretel story and it made a visual impression on me that stuck.  I met her in the Fall of '07 not knowing how my life would change that following Spring.  That Spring I would find out that my daughter had autism.  I have so often thought of Theresa and I have taken the 'breadcrumbs' piece of advice to heart.  Whenever I wonder if I am doing all that I can for Aleks and question what I should be doing next, I think of the breadcrumbs.  I have found that God truly does give us breadcrumbs of knowledge.  He'll use someone else to mention something that is working for them, I'll then get an email about it or have a second person mention it and then it hits me that this is a breadcrumb moment.  I have found that He'll keep giving me the breadcrumbs, but that it is my job to follow up on them.  It is also my job as the mom of a child with ASD to be aware and open to wherever God is leading us.  

My advice to parents struggling with the question of 'What next?' is this, look for the breadcrumbs.  Just be prepared that they may not be where you thought they would be and they may not be what you expected at all.  You may also be surprised at who God uses to show you a breadcrumb.

Blessings-

Melissa

The Debate on BIomedical Including the GFCF Diet

There seems to be an ongoing debate between parents of autistic children, doctors and even friends about the GFCF diet and other biomedical treatments.  I have met mothers and fathers who are open to trying anything,  parents who are scared and overwhelmed about making any kind of a change and other parents whose doctors have told them that it won't work.  To those doctors, I say shame on you.  Shame on you for destroying the chance that a child with autism could get better and shame on you for destroying the hope of a parent.   I know my own personal convictions on biomedical.  I've been to these 'doctors' and heard their lack of belief.  These are also the same doctors who told me that nothing was wrong with my daughter and that vaccines are not harmful.  Here is my response,  "There is hope and healing!".  For us, the diet, supplementation, therapies and schooling have been her miracle treatment.  In Dr. Bock's book he talks about developing a healing program.  This is ours and thanks to it we have a totally different daughter then we did a year ago.

The problem is not in whether the diet works, but in the support we give one another.  Not just between parents of autistic children who do and don't practice the diet but also between spouses.  One of the things I am so grateful for is that my husband had his doubts, but was willing to try.  Before we had read all the books and were convinced in the science behind biomedical, we knew we had to try.  The question became, what is the worst that could happen?  She'd try different foods, get good quality supplements and we'd be out a little money.  In the long run it seemed like a small price to pay for a ray of hope and the chance at recovery.  Today I am so grateful that we tried.  

I have to point out that the diet, supplementation and therapies aren't the answer for everyone. For some children it won't have the same results that we have had.  For some the healing will be more moderate, but for some it will be truly a miracle.  The best part is that it won't hurt your child.  Your child won't get sick from taking out the gluten or dairy.  They won' t get worse.  The great news, they just might get better.  Isn't that worth the chance?