Christmas: Special Needs Style

 

As I sit here this morning the taste of coffee on my tongue, I see the tree is up but not decorated. Dad put the angel on the top before he left for work this morning in the predawn gloom.
Dad is a paramedic, he saves lives for a living. Me: I work occasionally at a job outside our home but even though I hope that I can continue with it, it always ends with the same six words, "I can't watch your child anymore."

The first time I gave up a full time well paying job was when a pediatric psychiatrist said to me, "You brought these kids in to make a difference in their lives, you can't expect to do it if you drop them off at the sitters and go to work!" Ouch!

Fred had a meltdown after school yesterday, the last day of school as the holiday break begins. Too much school Christmas party, excitement and sweets, too much for his thin sensory processing abilities to handle. To top it off some sadistic parent sent as a class boy toy (that Fred received), a remote controlled truck, with... NO BATTERIES!  When he got home and opened it and realized there weren't any batteries he completely lost it. You would have thought the world was coming to an end the way he screamed and jump stomped up and down the porch then when he came to the door he would pound on the window. He couldn't get himself under control enough to hear a word I was saying, the anger management breathing we have been learning was useless. All he did when I finally got him in the house was sit in the chair, put his hands over his ears and scream, shrill piercing steam whistle screams. I got some medicine into him along the way and after an hour or so he just went quiet and said "I am calm now, can I watch tv?" By this time I was shaking with my heart in my throat wondering if he would need to be hospitalized again. "Yes, if you like", I said, he started to put in a movie then said "Can I go to bed?" Yes. It was a scary meltdown, for both of us. He's getting so big and strong now that he could really do great damage if he wanted to. When dinner was ready I went into his room and cuddled him awake to ask him if he wanted to come and eat. He said no he would eat when he was finished, I laughed and asked if he meant when he was finished sleeping, he said yea and rolled over and went back to sleep. He expends so much energy when this happens that he sleeps a deep recovery sleep.

We talked to the pediatrician when we were there on Tuesday about the times he "checks out" and we can't communicate with him at all and she is getting him scheduled for an EEG and MRI at Kosairs Children's Hospital in Louisville. Our last doctor vacillated on this, he knew Fred would have to be put to sleep for the MRI and wasn't ready to do that to him but now the necessity seems to out-way the comfort issue. Fred used to have little petite seizures that caused him to stop breathing and always meant a run in the ambulance but he seemed to have grown out of them but clearly something else is continuing.

At the end of my wonderful day my bil called, he said he was glad I was there to answer the phone because he didn't want to put it in a message that Fred might hear and not be able to understand or process well. It seems Grandma's cancer is either back or a new one has emerged. We should know soon after the first of the year which it is and what steps will be taken.

As I sit here thinking about the new day, I look around at the half decorated unfinished house and I think of my letter to Santa or at least what I would say if he could only hear me.

Dear Santa,
Please don't my little guy notice the bare tree or realize that the toys under the tree could have been more. Let him be happy with every one of the gifts he receives, let him think the little sparce  dollar store tree is the most beautiful tree in the world.  Let him know he is loved even though he doesn't realize many details in his life. Let him feel the love we have for him, please Santa put those drops of love deep within him so he can feel them within the damaged brain, the brain that was damaged by his birth mother when she chose to use alcohol when she carried him within her body.  Santa, please bring me a heart large enough to forgive her and to be able love my son without any anger towards her because of her actions. Please let the disability services except him, to bring him services in the form of camp, respite and group activities. You know how he longs for friends, how he has that need to feel to be excepted by his peers.
Santa, we need the miracle of Christmas everyday of the year to help calm his tortured spirit and think happy thoughts in all adversity, put stars in his eyes to hide my tears and worry from his sight. If this were your area of expertise I would ask that you would just use that Christmas Miracle to heal his brain and save him from a life filled with uncertainty and pain.
Santa, as his mother, I feel so unprepared for raising him, I feel like the fierceness of my natural need to protect him just isn't enough. Help me to teach him to use his strengths as his foundation when life sends him strong opposition, help me instill in him the love for others', a willingness to learn, the knowledge of the difference between right and wrong and the ability to choose wisely. 
I know moving 600 miles away from all our family and friends was the best choice for our little family but the steps have been hard and heart rending. Help us make our new home a place where we can sink our roots deep, plant memories and apple trees, where Fred can run happily and safely through the fields and paths. Starting over in a new place is scary Santa but with a bit of Christmas magic we can do it one step at a time.
And Santa while I am writing this wish list I realize I would like one more thing this year; Please spread the awareness to all women out there in their childbearing years that no amount of alcohol use during pregnancy is a safe amount and that they are putting their child at risk of a lifetime filled with uncertainty and chaos. Maybe please add to that one more tiny wish to my list; bring to the moms who adopt these kids and bring them into their hearts and homes; the gift of unending strength and love.
Thank you Santa. God Jul.
Love, Fred's Mom

Come Follow Fred's Journey

These words could have been written from my own heart:

Someone I Love
By Lori Hickman

A touching dedication to special needs children.

Someone I love relies on me in ways
you will never understand. 

Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves
for things that most of us take for granted. 

Someone I love will never have the opportunities
that every child should have. 

Someone I love will need unconditional love and support
after I am gone - this frightens me to the core. 

Someone I love encounters pity, stereotyping responses, and prejudice at every turn,

because they look, act, and/or learn differently than others. 

Someone I love has needs that require me to allow
"outsiders" to have power and input in areas that
should be mine alone to meet.

Someone I love will continue to look to me for
everything in life long after other children are
able to assume a place as part of the world. 

Someone I love has needs that require more time

and energy than I have to give. 

Someone I love has needs that mean I am not able to meet basic needs of my own. 

Someone I love has needs that have become the driving force behind major decisions my family makes. 

Someone I love has changed me in ways I will never be able to describe. 

Someone I love has taught me about love and about the really important things in life...

And still others don't understand what it is to be me.. they aren't living in my skin

SPD: Make Your Own Pizza

Make Your Own Pizza

This is a recipe I have had since my oldest daughter was young. We got it from a 4-H program I did for her age group then. I used it in my daycare home for years too and every kid that made it loved it.
Have fun!

Preheat oven 400 degrees.

1/3 cup Unbleached Flour
1/2 teaspoon Baking Powder
2 Tablespoons Dry Milk Powder
1/4 teaspoon Pink Himalayan Salt
1 Tablespoon Canola Oil
2 Tablespoons Water

Mix all the ingredients in a bowl. Form into a 5 inch pizza shape on a greased cookie sheet. Top with 1 Tablespoon Pizza Sauce and any toppings you like. Cover with 2 Tablespoons Shredded Mozzarella Cheese. Makes one pizza.
Bake - 8 - 12 minutes. You can get 3-4 pizzas on a Standard sized Sheet Pan

Great for kid's parties; give each child their own bowl and send the ingredients around the table one by one. Each child can top their pizza learning recipe reading, measuring and self expression at the same time. It's a great sensory seeker activity. Give each child a circle of Parchment Paper to shape their individual pizza's on, you can slide them onto the sheet pan for baking. Send a copy of the recipe home with each child.

If you only have one child you can open the can of pizza sauce, use what you need and put the rest in 1 or 2 Tablespoon amounts into an ice cube tray, freeze, pop out and store in a quart sized Zipper Freezer Bags to use as you need them.

I actually printed this out, put it in a frame and hung it on the kitchen wall.
Let me know what you think in the comments below.
I have added the affiliate links above to the products that I use.
Peace,
Fred's Mom

Second Therapy Session

Our second session was a bit of a re-pore building day. Fred & Marie played with toys and chatted about stuff.

Fred had a list of ten things that evolved into this:

1. I am good person.
2. I am smart.
3. I am strong and healthy.
4. I am a good helper.
5. I love reading.
6. I am learning new things all the time.
7. I love to eat with my family.
8. I love math.
9. I am learning and growing everyday.
10. I am a child of God.

He is to read these out loud everyday. I know it has a lot to do with rethinking things, training ourselves to think along a specific thought line. With the fasd child things get in the way of that such as memory issues, as in Fred's life, but I believe the key is to just keep going. I see and hear things that I have been trying to train Fred for years finally coming out of his mouth and in his behavior and actions. Yesterday, I was watching him cut his food on his plate and I saw him look at his knife, begin to draw it towards his face then set it down. He was going to lick it and remembered that we have asked him not to do that and decided to put it down. I saw the process as it was happening and I said to him, "Fred, I saw that you were going to lick your knife and chose not to, thank you." He grinned at me and said "your welcome." It's the little victories that will have Fred winning the big stuff. It's the consistency and time, we can't and won't give up on this beautiful boy.

Marie also taught me a breathing technique to practice with him so that it becomes an ability so when he needs it and is stressed out he can still do it. It’s really a slowing of respiration and looking at a 4:7:8 ratio. What that means is we have Fred inhale for four counts, hold for seven, and then exhale for a count of eight.

Here is Dr. J.Ryan Fuller going more into depth about how and why it works and there is a demonstration.

Dear Mothers and those who Love an FASD Child,

There is always hope. Love and encourage one another, if you are alone in this find another. Two are stronger than one and can hold each other us. Find a group, build a group.
When in doubt, laugh. Persist, persist, persist....
OK, enough mush, the reality is you do need support and your child does need you to soldier on. Your child needs you to search out whats best, teach whats best over and over to get through to the inside where they will have it to use when they are grown in this world.

Peace, Freds Mom

FASD FACTS

What is Fetal Alcohol Spectrum Disorder?

It's pretty simple really. According to Birth Defects.org

"Fetal Alcohol Syndrome is a group of physical, mental, and neurobehavioral birth defects that result from the mother drinking alcohol during her pregnancy.

Children with FAS may have many but not all of the following characteristics:

Growth deficiencies: low birth weight and length with ongoing growth deficiency and/or failure to thrive
Facial abnormalities: small eye openings, eye problems, ear deformities, flat mid-face, short upturned nose, low nasal bridge, and smooth, thin upper lip
Organ abnormalities: heart and liver defects
Skeletal deformities: small head, deformed ribs, curved spine, and joint problems
Central nervous system damage: mental retardation, tremors, seizures, coordination problems, learning disabilities, and abnormal behavior such as extreme nervousness, poor socialization skills, attention deficit, and hyperactivity

The facial characteristics of FAS may be most apparent in a child who is between the ages of two and ten. Prenatal alcohol exposure does not always result in FAS. Some babies are born with Fetal Alcohol Effects (FAE) that may include some but not all of the symptoms of FAS. These babies may be normal physically and mentally but have other symptoms such as hyperactivity and behavior problems."

How do you know if your child has Fetal Alcohol Syndrome?

While some deformities of FAS may be evident through prenatal ultrasound, it is difficult to diagnose FAS during pregnancy. Severe cases of FAS can be diagnosed at birth. The diagnosis is not based on a single symptom, and mild cases may be difficult to diagnose.
Some FAS cases may be similar to other conditions that have some of the same characteristics, which can make diagnosis very difficult.

Infants with FAS often are irritable, overly sensitive to noise, behind in their development, have trouble eating and sleeping, have too little or too much muscle tone, and don’t like to be held. If a child exhibits these symptoms or the other problems mentioned above and the mother drank alcohol during her pregnancy, a trained medical professional can evaluate the child for FAS.

Doctors typically rely on these symptoms and evaluations of intelligence and language development to help make a diagnosis. When a child is diagnosed, other children of the mother should be evaluated to determine whether they also have FAS.

What causes Fetal Alcohol Syndrome?

FAS is caused by the mother drinking alcohol during her pregnancy. The alcohol passes from the mother’s bloodstream through the placenta into the blood supply of the developing baby. Alcohol in the baby’s system can kill developing brain cells, slow growth of the brain, interfere with the neural connections in the brain, and affect other organs. Often mothers who drink have poor eating habits that also affect the baby. The range and severity of damage from alcohol varies from case to case and may be the result of various factors such as the quantity of alcohol consumed, the timing during pregnancy, the pattern of alcohol use, genetics, and environmental factors. There is no known safe level of alcohol consumption during pregnancy. FAS is 100% preventable when a woman abstains completely from alcohol consumption during her pregnancy.

How can you help a child with Fetal Alcohol Syndrome? 

There is no cure for FAS. Major physical defects of FAS may be corrected by surgery. Early diagnosis is important so intervention programs can be started such as speech therapy, physical therapy, and special assistance in school.

Counseling and treatment programs can also help women struggling with alcohol abuse. Understanding FAS and having the support of professionals and other parents of children with FAS can help families cope with and manage the symptoms of FAS. Some steps parents can take to help manage behavior problems of FAS include implementing daily routines, creating and enforcing simple rules, using rewards for proper behavior, and encouraging decision-making in safe environments.

What’s in the future for a child with Fetal Alcohol Syndrome?

Many of the physical characteristics of FAS become less noticeable as the child ages. The emotional and behavioral problems, however, may increase. The symptoms of the neurological damage are usually the most serious.
Most children will have normal intelligence while others will have mental retardation. Many children have serious problems with attention, impulse control, behavior, judgment, problem-solving, abstract concepts, and memory. Some children have vision and hearing difficulties.
As children with FAS mature, they may have difficulty performing in school, keeping jobs, and maintaining healthy relationships. Therefore, early diagnosis and treatment are important to help maximize a child’s potential.

Birth Defects.Org has a good fact sheet describing fasd. They also have a downloadable pdf that you can refer to for more detailed information. That is where I got a lot of my information.

The number of children born in the US with fasd is proven to be increasing.

I feel that this is the place to once again point out that FASD is completely preventable.

The next 5 links have a wide range of depth of information on prevention of FASD:

1. SAMHSA
2. NOFAS
3. Mayo Clinic
4. National Center for Biotechnology Information
5. Wiki

I did not put together this page to discourage anyone. I am the type of person that likes to have facts as a foundation for decisions made towards a better end so just in case you are that way too here are facts for you to use as a base to help you make your decisions upon. I also wanted this in black & white for all of the "He looks normal & healthy." people who have a hard time seeing the severity of my son's disability. For all of the people who do not realize the work and intensity of the training that has gone into this child to help him fit into your world as much as he is able to fit into it. The next step is hope & hard work. I will tell you more about that in the next post.

Peace,
Fred's Mom

It's not a Meltdown, it's a Tantrum

Yesterday was not a good day. I ended up in the ER after a major hive reaction to antibiotics and Fred had to stay with Grandma. 


Now, my mother is a tiny lady who isn't much bigger than Fred and Fred treats her like she is not an adult and bullies her. 

It was major chaos here when I got home with Grandma locked in her room and Fred having a major tantrum in his room. The cats were all hiding and my little dog was cowering under the covers in my bed.

Fred had broken his bed jumping on it and thrown all of his stuff everywhere. Just imagine all the legos on this table along the cars and superhero action figures. All the books from his shelf were everywhere, it was a large mess. Fred was yelling at the top of his lungs that life isn't fair and everyone hates him that he hates his life. He was "jump-stomping" (that's jumping with both feet in one spot) and he had the whole house shaking. 

Fred's "thing" with Grandma is making her feed him non-stop and yesterday, when she gave him his snack and told him no more he got angry. One of the things we have been working on is Fred's treatment of Grandma when I am gone and how she needs to respond to it. Because first and foremost it is very rude and inappropriate for Fred to bully Grandma. He will physically push her and scream at her to do what he wants her to do. This is a behavior that has just began since April and has gotten out of hand. Secondly, bullying someone smaller than yourself is just plain wrong. I want my son to grow up respectful of women and his elders and to be nice to others weaker than himself. Grandma has been coached to give Fred snacks by the clock. (wake-9am is breakfast, 10am is snack, 12pm is lunch, 3pm is snack, 5-6pm is dinner) and when it isn't time tell him so and go on. Fred isn't used to that yet and thus began the tantrum.

 
We have been using the card that he has written the 4 important skills he needs to learn on. We keep it handy on the table where we can refer to them as needed. Here they are, in this picture, in his own handwriting.

They are:
1. Follow Instructions
2.Take "No" for an answer
3. Accept Consequences
4. Disagree Appropriately

When Fred realized I came home he came out of his room and started yelling at me how mean his Grandma is and he is starving. I looked at the clock and it was past his snack time. I asked him if he had his snack at snack time to which he replied, "Yes, but I am still hungry". I know his snack was snack sized and not meal sized, it's not supposed to be. We were about 45 minutes from dinner at this point. I asked him to look at the clock and tell me if it was one of his meal or snack times. To which he replied no. 

Then, Grandma came out and told me what transpired and that she had sent him to his room because he was out of control. Since he was still belligerent and obviously not in control of himself I asked him what his 4 things he was learning were and he spouted them off. I asked him if he was following instructions, he said no. I asked him if he was taking "no" for an answer, he said no. I asked him if he was accepting consequences, he said no. I asked him if he was disagreeing appropriately, he said no. I then told him to go back to his room. The tantrum began again and went on for the next hour as he kept coming out and I asked him his questions while I cooked dinner. He would yell and go back into his room and throw something and do a jumpstomp and I knew he was still not in control of himself.

I want you to know that I did not yell and I did not give in. I am determined that this child will grow up learning this base foundation. I read so many things about fasd kids grow up not learning base social skills and then they end up in prison because of it. I just want to give my child every chance of a great life. I thought of it this way; did you ever have a record player as a child? I did, and when a record was damaged and playing and coming to the spot where it was about to skip if you just put a little pressure on the arm and pushed on the needle a wee bit to get it to stay in the groove instead of jumping out and going it's own way you could eventually get the skip worn out and have it playing music all the time without the disturbance. I think for the fasd brain it's the same way. Keep on the same track until that track is worn in and they are playing beautiful music.

After a while it was quiet in his room and I asked him if he was in control of himself. He said Yes. I said good, now here come the consequences: Pick up all your things and put them away... and he did. We then talked about why he was sent to his room, why he couldn't come out of his room until he changed what he was doing, why he had to pick up his room all by himself. When he is calm he can be rational and make good choices but when he is angry/upset/hungry he just reacts. We talked about the difference in the things that he is allowed to do depending on his choice of behavior; play freely or sit in his room. I am hoping these tools we are implementing will help us shorten the time between reacting and purposefully acting.

After dinner he apologized to Grandma and she hugged him up. He took a shower, took his medicine and slept all night.

Here is the book the therapist recommended: A House United: Changing Children's Hearts and Behaviors by Teaching Self Government

Peace,

Fred's Mom

PS: the difference between a meltdown and a tantrum is that they can't stop a meltdown but they can stop a tantrum to talk to you before they go on with it again.

Spectrum Things to Buy

Fetal Alcohol Spectrum Disorder

Birth Defects.org

Full Definition of SPECTRUM

A mothers story in this journey:

This book was suggested by Fred's therapist;  A House United: Changing Children's Hearts and Behaviors by Teaching Self Government

Photos by Kirsten Hughes Photography

First Therapy Session

November 24th, 2015: We went to our first therapy session with a nice lady named Marie. Marie is an adoptive parent of several special needs children. We chatted a bit while Fred was outside, talking about Fetal Alcohol Spectrum Disorder. How it came about and a few of things I know about Fred's early babyhood. She asked about some of my concerns and I told her that because of Fred's lowered comprehension, impulsiveness and the fact that consequences have no impact on him I have great concerns for his future. That even with my child development foundation I was at a loss and I needed more parenting tools for my life bag.

Fred joined us and she chatted with him a bit about who she was and why were were here. She asked him if he had any issues he wanted to bring up and he said, "I am always mad at my mom because she won't give me my own way all the time." She got a good idea there about what goals we needed to work to accomplish.

The first thing she wants to work with him is anger management.

Secondly she gave me a book title to find and read. Here is the link: A House United: Changing Children's Hearts and Behaviors by Teaching Self Government

Here is the basic list of accomplishments from the book.:
1.) Follow Instructions
2.) Take "No" for an answer
3.) Accept Consequences
4.) Disagree Appropriately

Fred was given the "assignment" of writing a list of facts; things about him that were good & true, Marie led him through the first one. "I am a good person". I will write out the total list when it's finished.

One of Fred's consequences for his actions used to be to sit in a chair. We got away from that when we moved because most of the extra chairs were still in storage and it wasn't quite as convenient and I wasn't sure it had any real impact and I forgot about it and got out of the habit. Anyway, we are going back to sitting on a chair as a consequence. I will let you know how it goes.

We will see Marie every Tuesday for a while. I probably won't post every week about it exactly but I wanted to have a starting point for me to remember.

Thanks,
#fredsmom
#fasd
#preventfasd

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