Friday, August 22, 2014

Yesterday started off with a bang...

I was not good as you can see from the post I wrote on our FB page:

"Today I hate autism. I hate the challenging behaviors it gives my son. It's not his fault, it's the autism. I hate that I have those moments where I just need to close the door and scream! It's not my fault, it's the autism. I hate that it can ruin a moment in time for my family. It's not our fault, it's the autism. I hate that people who have not experienced autism first hand can be quick to judge. It's not their fault, it's the autism. I hate that at times I feel like I'm the only one that gets me, when there are thousands of autism parents having that same feeling. It's not our fault, it's the autism.
There are times that I love what autism has taught me. I love that other autism parents support each other. I love when I can share a suggestion that works for another parent and they are so appreciative. I love that ah-ha! moment when I figure out that one thing that helps my son "get it".
But today, I hate autism"


Saturday, July 5, 2014

Autism and my Nuro-typical child

I have a son who is going to be 8 soon.  He has a brother who is Autistic.  He can be is brothers best role model and worst critic.  He is impatient at times, and that's understandable, but no one can deny how much he loves his big brother.  We started ABA a few weeks ago and have been having some good session.  But on July 3, things got rough as I described in my posts on our FB and G+ pages.  In the hour and a half that my older son was having his meltdown, D was in his room playing with the iPad and waiting for the calm.  He has seen these episodes in the past and has been in tears over it.  I feel bad for him when this happens.  Not only because he's obviously overcome with emotion but because at these times, I have all my focus on my older son.  But that is the least of his worries from what I can tell.  Aside from the gut wrenching screams that are definitely unnerving, he will say to me he was upset by what 'Milo saying (usually calling me names), or that he was hitting me or hurting himself (banging his head on walls or scratching his face)  Or he was upset that 'Milo was throwing things or knocking over furniture.  I'll admit, the older he gets, the stronger he is... and well, the older I get, not as strong as I used to be I guess, but at least for now, I can still overpower him so there isn't too much damage.  But Thursday it was evident that 'Milo had actually physically left me with some marks.  Honestly I've grown a thick skin to this.  I take none of it personally.  In fact, when every last bit of his outburst is over with, he'll sit quietly for a bit an out of nowhere he back to just being 'Milo.  He will tell me sorry for "being crazy" and give me hugs a kisses, the go on as if nothing had happened.  It's like someone flipped a switch. 



When my younger son saw this he said, "Did 'Milo do that to you!?"  I said, "yeah, but I'm OK".  He didn't respond.  The next day he saw my arms again and said "I don't like seeing these marks on you...when are they going away?"  I said, "hopefully soon".  Then today, 'Milo went over to grammy's for the night...honestly, I think she just likes to give me a "break" now and the, bit also to give me and D some one-on-one time.  Seriously, he deserves it.  I asked him what wanted for dinner and he said pizza.  I said "oh, you want to go to Pieology?", he said "no, just here".  So we went to the store, got a pizza, brought it home and sat and ate.  As we bit into our first slice, he put his hand out for mine, and held my hand...as we sat and had pizza... just the two of us :)


Thursday, June 26, 2014

We need to talk about it!

I know, I know... who wants to talk abou this, right??  But don't we spend so much time already trying to give our special needs kids the best possible quality of life right now.  But what happens when we're gone.  What happens if your child is an only child.  What happens if you have other children who are Nuro-typical and go off to collage, get married and have a family of their own?  What if we live a long life, but are not capable of caring for our special needs child when they grow into adulthood?  Planning for a special needs child with benefits such as life insurance 401K, saving accounts, are critical in helping families pay the huge expense of caring for and educating their children with special needs.  However, a child with special needs cannot have more than $2,000 in their names; if they do, the government could freeze benefits such as Medicaid, Medicare, Supplemental Security Income, or Social Security Disability Income – money some families need to care for their child.
Here are a few things that I found on the Mass Mutual site that parents/caregivers should remember.
  • If you have life insurance, make sure the policy does not benefit the special needs child directly; proceeds that are generally tax free should be paid into the child’s trust
  • Do not give or accept financial gifts or assistance in the name of a child with special needs.  If you do, deposit gifts into a special needs trust that benefits the child.  these gifts can legally be given to the trust of a child with special needs and will not jeopardize government benefits if the trust is properly drafted to comply with your particular state’s requirements.
  • Be aware: there is no difference between gifts of cash, bonds, stock, property, inheritance, annuities, art and automobiles; they all count against the child’s net worth
Another really good tip my cousin pointed out to me is a conservatorship.  When a child reaches the age of maturity 18 in most cases, but 19 or even 21 in some states and is not ready to make adult decisions, he or she is nevertheless considered an adult under the law.  A parent may find, that they are no longer allowed to handle their child’s money, gain access to their child’s health records, or make important medical decisions. It may be appropriate in these cases to consider a conservatorship.

All of this should be discussed with a attorney or financial planner to ensure the trust works best for the needs of the family and child.   
Check out this clip from Autism-Live from their show on May 8 where they talk about Special Need Trusts.

Sources:
Mass Mutal
The information provided is from my own research and is not specific for every family situation.  Please be sure to check with a Special Needs Trust Attorney or Financial Adviser to find a plan for your specific needs.

Saturday, June 21, 2014

I came across this on my computer and I thought I'd share because this melted my heart then and still does. I have this posted at my desk at work and I see it everyday.  
Before I had my boys, about 12 years ago or so, I was diagnosed with Lymphoma and treated with chemo for 7 months.  Every year the Leukemia/Lymphoma society holds a fundraiser called Light the Night.  This is a cause that has been close to my heart since being treated and recovered.   I have taken the boys almost every year since they were little.  Everyone is given balloons; red for caregivers/supports, white for survivors, and gold in memory of someone who passed.  These balloons light the night.  It is a beautiful event.
In Nov 2012, when 'Milo was in 3rd grade, we went to this event like we had in the past.  At the time 'Milo's teacher had a daily assignment in the class where they would write in a daily journal.  These writings were sent home every couple of weeks...and that's when I saw it.  This beautifully drawn, beautifully written recollection of the Light the Night event we had attended.  I was so moved because before then I never really knew how much he realized what is going on around him or if it impacts him enough to remember something, beside cartoons or a video game.
But this time I knew.





Monday, June 9, 2014

Eye Contact

Check out this video regarding eye contact and why it's so important. Those of us not on the spectrum do this all the time and may not even realize it. This is one thing the ABA therapists are working on with 'Milo. 







If you have a chance, check out Autism-Live on YouTube.  You can also check out their website autism-live.com!  It is a great source of info and resources.

Friday, April 11, 2014

A change is coming...it's a good thing, really!

'Milo has received services since just over 2 years of age; Occupational Therapy (OT), Speech, and Early Intervention. Since starting PreSchool at age 3, he has been provided OT, Speech and Adaptive PE (APE - for gross motor skills) thru LAUSD. All, thankfully, free of cost. Each year at the IEP meetings, his services have always been reviewed an renewed. Today, sitting in the office waiting for the meeting to start with 'Milo's dad, I said to him, do you think 'Milo even needs to continued speech therapy anymore? After talking it over, it was clear to see that he has come a long way, even in the past few years, that we agreed to bring this up at the meeting. Then I said, what about APE? He's been playing soccer and he seems to be much better with the skills as well. And again after discussing, we agreed to also bring this up in the meeting.
So here we are, 'Milo's teacher, his speech teacher, the vice principle, 'Milo's dad and me. We went over the his English, math, writing and so on. Talked about the goals he met (most of which he did!) and some that needed to be adjusted to be more attainable. So when speech came up and the teacher talked about how he's met these goals and how much better he was even since the beginning of this school year and new goal we listened. It was then I said, "we were just talking about this before the meeting started and we're thinking, does he really need to continue with speech? He's come so far in just the last few years; he's aware when he mis-uses a word, and will even correct himself and if clear about that he saying. We feel that he should spend more time on his academics. What are your thoughts?" His teach nearly jumped out of his seat! He said, with a huge smile on his face, "I think this is the first time a parent has asked to remove a service! We have to mark this day down! You guys get it!" He said that parent see progress and they ask for more time on services, but we were asking for just the opposite! This is 1 hour a week, that he is away from class and it just didn't make sense anymore to use that time on a service. He even said, "you should write a book!" I think that was the biggest compliment When the APE services and goals came up, we said the same thing, let's use this time on academics now. I said "he plays soccer now and even wants to try basketball. We think he's ready to transition out of that service as well". They asked how he was doing with soccer, I said he did great, he was even goalie and played defense, blocking shots running up and down the field. They were all supportive of that as well. So now the next step, which is required, is the put in the request for an evaluation in these two areas just to record his progress and make sure these services are no longer needed. I'm sure they will be removed and so next year, he will be able to spend more time in the class on academics. More than likely, the assessment won't be completed until the next school year, but we were able to request that speech be reduced by a half hour a week in the mean time starting the next school year.
All in all it was a great meeting and very happy with the out come. We should start to see some more progress in his academic goals with that extra time in the class. Onward and Upward

IEP: individualized education program - Kids with delayed skills or other disabilities might be eligible for special services that provide individualized education programs in public schools, free of charge to families. Parents work with educators to develop a plan to help kids succeed in school. The IEP describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them. - Source, http://kidshealth.org/

OT: Occupational Therapy - helps kids who have a physical, sensory, or cognitive disability carry out everyday activities like brushing their teeth or putting on shoes and socks. - Source, http://kidshealth.org/

APE: Adaptive PE - Adapted Physical Education is physical education which has been adapted or modified, so that it is as appropriate for the person with a disability as it is for a person without a disability. Assists in fundamental motor skills and patterns (throwing, catching, walking, running, etc) - Source, http://www.apens.org/

Speech Therapy - With a variety of techniques, speech-language therapy addresses a range of challenges often faced by persons with autism. For instance, some individuals on the autism spectrum do not speak, while others love to talk but have difficulty using conversational speech and/or understanding the nuances of language and nonverbal cues when talking with others. - Source http://www.autismspeaks.org/

Early Intervention - Early attention to improving the core behavioral symptoms of autism will give your child – and the rest of the family – several important benefits that you will not gain if you take a wait-and-see approach until your child enters school at age four or five. A good early intervention program has at least four benefits: It will provide your child with instruction that will build on his or her strengths to teach new skills, improve behaviors, and remediate areas of weakness. - Source http://www.autismspeaks.org/

Wednesday, April 9, 2014

Diet & Encouraging Picking-Eaters



None of us have this problem, right??  I can tell you, in my personal experience, my son adjusted to food well after being breastfed.  He tried just about anything; fruits, veggies, meats, dairy, the works.  As he got older he stopped eating foods he use to eat.  Now at age 9, he has gotten very picky and specific about food.  He does not like fruit.  In fact, just until a few years ago, he would eat bananas and applesauce, but he refuses those now.  He's actually better at veggies and will eat broccoli, carrots, peas, onion (mixed in foods), string beans and corn.  And forget about breads.  Will not touch or eat and if someone is eating bread near him he has a disgusted look on his face!  So I was excited for this topic.  Here is some information I obtained at a recent support group meeting at CARD.  I feel a disclaiming coming on....

This site does not provide medical advice. The content of the information obtained from CARD and shared here is intended for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding you or your child with Autism. Never disregard professional medical advice or delay seeking it because of something you've read here.


Common Nutrition & Feeding Concerns:
  • “picky” eating behaviors 
  • Difficulty with transitioning to age appropriate diet 
  • Increased Sensory Sensitivity 
  • Short attention span 
  • Limited variety in diet 
  • Need for routine

Common eating preference:
  • Preference to dry, crunchy food
  • Refusal of soft, smooth textures
  • A dislike for fruits and vegetables
  • Preference to finger foods
  • Preference to certain brands and preparation methods
  • Preference for food of particular color(s)
  • -some common foods that are preferred:
  • Dry cereal, crackers, chicken nuggets, pizza slices, hot dogs and pasta

Impact on growth and development?
The majority of children with ASD are of average height and weight, according to the Center for Disease and Control (2012)

Other nutrition concerns that are associated with diet:
-vitamin and mineral deficiencies
-gastrointestinal concerns (reflux, constipation, diarrhea)
-food allergies
-drug nutrient interations

Drug Nutrient Interactions
Medication may increase of decrease appetite and may affect vitamin and mineral absorption.
Examples for interactions:
-Ritalin decreases appetite and stunts growth
-Risperdal or SSRI, may increase appetite
-Seizure medications affect calcium, vitamin D and folate metabolism and may need to be supplemented

What we know about Autism & diet implications
  • Studies have shown a difference in nutrient intake with typically developing children (CDC, 2012).
  • Additional studies have shown children diagnosed with ASD eat less than the recommended amounts of: vitamin C, D, several B vitamins, iron, and calcium

Gluten-Free, Casein-Free diet
-Leaky gut hypothesis; the gut allow peptide metabolites of Casein & Gluten to cross into the blood stream and then into spinal fluid.
-These peptides act as opiates in the brain and interfere with CNS Function.
The central nervous system (CNS) is the processing center for the nervous system.  The two main organs of the CNS are the brain and spinal cord.  The nervous system consists of the brain, spinal cord and a complex network of neurons. 
Some argument have been made that Autism may be influenced by Gluten and Casein diets

GCFC Diet:  Studies and Implications
-A meta-analysis in 2008 showed no-evidence for efficacy of a GFCF diet.
-2010 study of 15 children with Autism (ages 2-16 years of age), showed no significant results.
--However, Parents and Caregivers reported improvement in Autism related symptoms
--Indicate there is more of a need for investigation and analysis within clinical trials

GFCF diet impact on families
-Extra time needed to buy and prepare foods/meals
-Diet makes child “special” or “different”
-Diet makes peer/social interactions difficult by the introduction of this barrier
-High cost of alternative foods

GFCF Diet: Nutrition Implications
Children on the GFCF diet ten to eat more fruit & vegetables, and less bread and cereals.
Common risks of nutrient deficiencies:
Gluten Free diet: Iron, Zinc, B-vitamins and Folate
Dairy Free diet:  Calcium, vitamin D, Vitamin B2, and Protein

GFCF diet:  What to do?
Weight the Pros and Cons and decide if the diet may be an “option” for your child.
Start slowly.  Start with a CF of GF diet first.  Then make a few changes at a time, and observe your child
Supplement Calcium and Vitamin D
Give a Children’s Multivitamin with Minerals
Most importantly, talk to your pediatrician or consult with a registered dietician.

Encouragement: picker eaters
Helpful guidelines
-Important to rule out any medical drivers of food allergies that could be causing a dislike of particular flavors or food groups.  (Consult with pediatrician/dietician)
-Its perfectly natural for a child to be averse to eating a food that caused a bad tummy ache or a bout of food poisoning in the past.  Basic instinct!
-Avoid making food a source of conflict with your family!  Arguing over a food item will not make any situation better—tends to make things worse.

7 Stops to trying new foods: 
  1. Simply look at new foods items together 
  2. Suggest to smell it and/or touch the food item together 
  3. When you feel your child is ready, suggest licking or tasting the food item
  4. Sometimes it can help to mix the new food item with a familiar and preferred food for the first taste.  (This gradual approach can decrease anxiety about new foods by increasing familiarity. 
  5. Try and give your child choices so they can feel in control of their meals (provide 3 choices:  Peas, carrots or salad  -or- Providing a wide array of foods items, like a buffet. 
  6. Make you child’s favorite meal, but add a “mystery ingredient” and make a game out of it 
  7.  Include your child in the cooking process, and have him/her choose certain food items (encouraging choice and control can help avoid argument/meltdowns and encourages a more varied diet)
    It’s important to find solution with you child.  The more fun, the better. Make faces on pizza with different vegetables and pepperoni. Paint with pasta sauce. Experiment with how food changes color or consistency when mixed together or cooked. Each of these activities will help a child become more comfortable around new and different foods, create opportunities for trying new tastes and keep food discussion positive.  Make mealtime an opportunity for flexibility, education, choices, and most of all, fun and children will respond favorably, whatever their age.

    source:  CARD