Friday, October 20, 2017

A Busy Week And A Fun Family Day

Life has been rushing on by at an alarming pace. I think homeschooling makes the days go by faster since our mornings are devoted to school. Last Friday the children and I combined school work and apple sauce making. Kind of makes a complicated, sticky mess but we were finished with both jobs by lunch time thanks to willing helpers.

Kiana, Joseph and Lia kept the sink filled with apples and ran errands for me.

Thanks to COBYS and SWAN we enjoyed a day at Cherry Crest Farm yesterday. The weather was beautiful and the children loved having dad along and I loved having another adult along to keep an eye on everyone.

Feeding the goats

Lia and Joseph standing on top of the straw tunnel.

Inside the straw tunnel.

Lia made a new friend!

Crawling on the "spider web."

Hang on, Kiana!


Strasburg Railroad goes through the farm.

Dean had to go in to work for a few hours. When he came home we went to Plum Creek Farm for ice cream. It was too cold to be eating ice cream but we really wanted to try their Pumpkin Spice ice cream so we endured the shivers! The ice cream was delicious!

Lia skipped the ice cream and ordered french fries instead

October is "dentist month" at our house. Joseph had an appointment on Tuesday and I had one on Wednesday - a make up for last weeks missed appointment. You can read about that episode here: An Almost Tragedy.

Taking selfie's with mom's phone to pass the time.

When mom and dad stay up till all hours of the night calming a sibling, you just might fall asleep on the couch! 

We are having some good days with Kiana, although the hard ones are still in the majority. Someone mentioned the other Sunday that I stayed in the service all morning, something that hadn't happened for months thanks to Lyme. That comment was a good reminder that things are getting better and I need to focus on those times. Today is Kiana's 10th birthday. I will admit I was apprehensive because birthdays are major triggers for our children. However we have had only one "episode" this morning, leaving me feeling grateful. Now I need to go bake a cake and wrap a birthday gift!

Thursday, October 12, 2017

An Almost Tragedy - No Cause And Effect - Living With FASD

What a morning! I had a dentist appointment to get my teeth cleaned and thought since it wasn't going to take long, I would leave Joseph home with Tristan. They had their school work to do and typically if it is just the two of them, they act like men and do fine.

When it was time to leave for my appointment, Tristan was outside helping someone who had stopped in, so I told Joseph to grab his boots and get in the explorer. I planned to take him out to Tristan where he could sit and watch what he was doing. Except that Joseph didn't have any socks on and he NEEDS socks. I told him he would be fine this time but he screamed and kicked the explorer door till it rattled saying it wouldn't be fine! I drove back to the house instructed Kiana to run inside and get his shoes so he could go along to the dentist. That infuriated him and as we were going down the drive he opened the door and tried to jump out. I quickly pulled over and turned on the child safety lock (he never sits beside the door for this, and other reasons). As we were going down the road he threw his shoes at me and declared he will not go inside with me. My brain finally kicked in and I realized that I needed to cancel my appointment otherwise we would have a very unpleasant scene at the dentists office. I could envision police, CYS and all manner of unpleasant things.... paranoid? Much!

When he realized we were turning around, Joseph thought I could just take him outside to Tristan and when I said I won't, the rage came back with a vengeance. So I am back to being a stupid, old lady who is mean and wants to mess up his life. I made myself a cup of cappuccino and am sitting here regaining my equilibrium.

I told Joseph that if he would have jumped out the door, I would have drove over him and he could have died. He looked at me and said, "I don't care, I wanted to go with Tristan!" No cause and effect...from now on he sits in the back or the safety locks are on at all times!

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Monday, October 9, 2017

When Parenting Is A Struggle - Living With FASD

Sometimes I long for Joseph to be normal, if for no other reason than for my own selfish desire to no longer have to have my brain always working overtime to keep him safe and regulated. I get so tired of parenting a child who will never grow up to be independent, a child whom I love but who exhausts me daily with his inability to follow directions, who has the ability to drive his siblings up a wall with his silent harassment.

One child recently said, "I wish Joseph would just act normal!" Dean replied, "He isn't "normal" like you and I, so how can he?" What makes it really hard is that it looks and sounds like he has it all together, but his actions show there are some major disconnects going on. 

I get tired of constantly directing, redirecting and then following up only to find, he still didn't follow through with what he was told to do. I know it is a processing problem, but it looks and feels like defiance....and he is smart enough to use this as an excuse for times when he doesn't want to do a chore.

Everywhere we go, we have to make sure we have a place for Joseph, will it overstimulate him, will there be a crowd of people, will the people understand and accept that we have firm boundaries for him for a reason? A simple lunch away set off an hour of screaming, throwing blocks, shoes and toys and ended with new dents in the walls. 

I get so weary of him riling his siblings just to get a response out of them. Only to go into a rage when they get upset because, "I can't play with the others and I have such a boring life!"

I feel so smothered by his need to always have Dean or I by his side to guide him through each moment of each day only to have our vigilance undone by a moment's inattention on our part.

I get tired of being screamed at, lied to and manipulated then having to figure out if he was accountable for his actions or if his brain was on overload and he was unable to control himself. Regardless of the reason, I feel the same frustration but I have to keep stuffing it back down because if he senses I am upset, he escalates.

And underneath is fear because he is only 9 but some day in the not so distant future he will be bigger and stronger than I am. Then what? Who is going to physically remove him when he becomes overstimulated and begins tossing things? Who is going to keep him in his room to calm down? Who is going to keep his siblings safe? Who is going to restrain him when his anger gets out of control? 

I know all about the dysmaturity, processing disorders etc behind the actions but when you live with a someone who appears to intentionally irritate and provoke his family, it can be very hard to show grace. I thought we must be unique in this problem until I joined FASD support groups and found that this is often a universal struggle for families. I often feel guilty for struggling in this area, after all it isn't his fault, he didn't choose to be this way, but I find continual stuffing of ones emotions isn't profitable either. 

What do you do when you feel smothered and respite is not an option because no one understands the need to maintain your child's boundaries to the full extent? 

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Saturday, October 7, 2017

Claiming My Circus

October always brings back memories of Braden, as this is the month the ICPC paperwork went through and he could move to his new family. As time goes on we tend to forget how hard things were and grief on a new level sets in.

I was feeling rather defeated yesterday so I burned some candle's to brighten the day.

Tristan gave this candle for my birthday

Flowers from a friend

We have bunnies once more! They are cute when they are little but like all animals, they grow up and the cuteness disappears.

I bought a Go Fish game with the alphabet on the cards to help Lia with her sounds. Some days she can put sounds together and read words, other days they may as well be Greek.  I will admit seeing her on again, off again learning ability took some accepting because I know what is behind it.

Kiana had a rough week again. The other week she had a crisis and we realized we need to keep her talking to keep her from getting so low. Easier said than done as getting her to talk brings on floods of  tears and rages. We did pretty good for a few days then slowly slacked off and guess what happened? Down she went! It was building up all week and threatened to erupt on Thursday but we went to Grandma for lunch which forced her to get on top of things. Yesterday she spent the day huddled in her blanket because I couldn't get her to talk. Because of her issues with me as her mom Dean can get her to talk much better than I can. In her mind, unreasonable though it may be, I am the source of her troubles. Last Saturday it took till midnight till she finally gave in and told us what we really going on. Last night it only took a little over an hour so maybe we are making a little progress! She keeps saying, "I wish I could feel good again, I want to be like other girls!" 

Kiana had an appointment with her Lyme doctor on Friday and she said she had recently attended a Lyme Summit where they mentioned that the essential oils oregano, cloves and cinnamon have, in some people, suppressed Lyme even more than antibiotics. She said there is no scientific studies out to prove it but she felt it was worth a try, especially since those oils won't cause any harm. We are waiting for the results for the coinfection tests as I failed to include some info which delayed the results. Was so frustrated with myself! 

Joseph has been reacting to Kiana's decline with meltdowns of his own. Sometimes when they are both going off at once I wonder who's circus I stepped into. :) Tristan keeps saying he feels sorry for me (most of their rage is directed towards me) I told him that I don't take it personally as I know they are letting out their pain in the only way they know how. He can't understand how I am not offended by the things they yell at me and I have a hard time explaining why it would hurt if he said the things they say but when they tell me I am a stupid old lady, I just brush it off and wait for the hug I usually get when the storm has passed.

I have learned (or am learning) to embrace the circus and joyfully claim the monkeys!

Tuesday, October 3, 2017

Sibling Relationships - Living With FASD

Like everyone else, people with FASD long to be loved and accepted. Due in part to all the trauma our family has gone through over the years, Joseph and his siblings have a strained relationship. They endured trauma in their bio homes, then secondary trauma in our home due to RAD and FASD. The secondary trauma, cemented their thinking that our home is not safe. Obviously mom and dad were not strong enough to keep them safe because things happened to intensify their fear and pain even while mom and dad were saying, "You are safe now." 

Joseph's actions are similar enough to his brothers' that his siblings are triggered even when he means no harm. Because of his inability to read social cues, Joseph often steps into a situation and causes more chaos. It looks like he is intentionally antagonizing his siblings, when in reality he is just trying to help. Joseph has weak core muscles so he isn't good at playing physical games, while slow processing speed makes him an easy opponent at board games. Play is usually where children build relationships. The above reasons plus Joseph's lack of self control make that nearly impossible.

With all this stacked against him, he has a hard time building positive relationships with his brother and sisters. He wisely thought up of a plan. He would be super helpful, which is a good idea except that FASD once more got the upper hand. For instance, when he wants to open the door for someone, he pushes past them and then proudly holds open the door. That doesn't go over well with temperamental siblings! If I drop something, he will drop his book and come running to pick up the fallen object, tripping over his feet in the process. He tries to quickly clear the table all by himself but drops dishes because he carries too many at one time, despite repeated reminders to carry one plate at a time. Sometimes I feel sorry for him and other times I need to remind myself to be empathetic. If he would do what he is told to do instead of forever rushing in and trying to help, life would be so much easier for everyone. The problem is, how do I explain that to him? He melted down the other day because, "I was just trying to help and now everyone is cross at me!" 

We were at a loss as how to help him until Dean struck on a brilliant idea, "You need to ask before you try to help people." He told Joseph. "Sometimes people don't need help and sometimes when you try to help and the person doesn't want help it just makes them grumpy." 

The flip side is his siblings. In reality they should be the one's who are showing grace. However the whole trauma thing discolors every situation, plus someone with Neuro Lyme isn't exactly prone to graciousness! Sometimes I think perhaps we should begin family therapy to work through some of these issues, but Kiana wouldn't be able to process much, neither would Lia and Tristan isn't at the age where family therapy would appealing. Maybe I am just taking the cowards way out. Have any of you tried it? If so, what did you think? We went for a few sessions around the time Braden left but our hearts were so broken and bruised from the past years that it wasn't very beneficial.

And so, that is the current situation at our house, trying to teach our children how to have good relationships when the odds are stacked against them!

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Thursday, September 28, 2017

If You Loved Me You Would Let Me Do What I Want! - Life With FASD

With Fetal Alcohol, the difference between what they know and what they can do is the disability. They know alot, but because of deficits in their executive functioning it's hard to put thoughts into action. - Jeff Noble

This is true for Joseph in many area's, except for the, "I want to build something," area. He knows what he wants to build, he knows how he wants to build it and he can describe in great detail how he would do it. The problem is his idea's won't work because he is missing key points.

He wants to build a go cart. In his mind all he needs is wheels, a seat and the pedals from his bike. He would hammer it all together and he would have an awesome go cart. Except it isn't quite that simple, but we can't tell him that because in his mind it will work. So we have a meltdown because, "You are just being mean!" 

We have discussed helping him build a go cart, but there are a few problems. For one, he wouldn't be safe with one because steering, speed and pedaling require's more brain power than he can afford at one time. Two, he isn't safe with tools. He can use a hammer but in his mind if you let him use one once, he has free reign to use one whenever he wants. Trust me, Joseph with a hammer is asking for destruction! Don't ask how I know. Three: anything Dean helps him make will not turn out how he envisions which will bring on another meltdown.

Joseph wanted to play with his old bike so Dean left him take it to his play area (a small clearing in the woods where I can see him from my kitchen window). Our hope was that this would fill his intense desire to build something. He took the chain on and off and pretended the bike was his plow. That was fine and kept him occupied for a few weeks, until he decided to take it apart. He got a piece of metal off the bike and bent it into a "knife" and was shaving Kobi with it. I took it, much to his dismay and frustration. Next he took the seat off, ripped it apart and used a piece of wire he found inside to make a tool. Another meltdown because I said he may not have wire as it is too dangerous.

This goes on day after day. Joseph isn't safe with anything metal, sharp or heavy (think of an 18 month old) and he is determined to find things to make his own tools since Dean won't let him use his. 

Yesterday he screamed and raged because he wants to build something "real" with dad's tools. I explained that Kiana doesn't use electric tools like my mixer or blender either, but of course he wasn't processing anything I said. "I feel like leaving here!" He yelled, Dean calmly replied, "There is the door." Sometimes giving him permission to leave is enough to deter him. Rather than leave, he stood there and screamed. Eventually Dean put him to bed where he thrashed, kicked and threw things until he ran out of steam. After awhile he came to me for a hug and asked, "What is wrong with me, my eyes are all red?" I told him that is what happens when he cries a lot. He hugged me and bounced off to bed, but later I heard him sobbing again. Poor boy, we don't know how to help him understand that he is only 9 and not physically able to do all the things he dreams up and besides most of his ideas won't work. He is certain we are just being mean and don't like him. "If you liked me you would let me do the things I want!" Is his thought process. Due to his FASD, trying to tell him otherwise is useless.

Today he is outside building a tepee, something that doesn't require tools, thankfully. However I expect another meltdown because he plans to live in it and it is too small for him to even sit inside. 

Monday, September 25, 2017

FASD Links, Books, Support Groups And Websites To Help You And Your Family Better Understand FASD

Your child has recently been diagnosed with FASD, now what? How do you begin to understand, much less help family, friends, teachers and others who are involved with your family, understand this complex diagnosis? 

Here is one of my favorite websites:
National Organization On Fetal Alcohol Syndrome This website will tell you pretty much anything you need to know about the basics of FASD.

FB groups are very helpful. As with most illnesses or disabilities the people who understand it best are the ones who are living with the condition.
Parenting FASD Kids and FASD Flying With Broken Wings are two of my favorite FB groups.

I also follow Jeff Noble @ Fetal Alcohol Syndrome Forever. He shares tips and quotes as well as links to valuable information.

Diane Mabin's book: Trying Differently Rather Than Harder: Fetal Alcohol Spectrum Disorders is invaluable. If you don't like reading and need to choose just one book, this is the one you want to read!

Our FAScintating Journey: Keys To Brain Potential Along The Path Of Prenatal Brain Injury, by Jodee Kulp is another excellent read. This book shares in depth information on how to help your child have the best brain development despite the damage that has already occurred.

I wrote a blog post on The Fatal Link, a book that shares in depth information on the why's and wherefore's of prenatal alcohol exposure. If you are like me and enjoy research, this book is for you!

Here are some blog posts I wrote on FASD:

The following is copied from NOFAS.
The maturity and development of people with FASD can be uneven and confusing. Strong abilities in certain areas, such as expressive language, can hide deficiencies in other areas. Caregivers are encouraged to “think younger” when assessing their child’s abilities and to look at dysmaturity as a symptom of the disease. The following chart displays the variability in maturity and ability in a single person with FASD
Skill/Characteristic                                                                            Developmental Age Equivalent
Chronological Age ————————————————————–18
Physical Maturity—————————————————————18
Developmental Level of Functioning——————–9
Daily Living Skills———————————————11
Expressive Language————————————————————————23
Receptive Language——————————–7
Artistic Ability (or other strength)—————————————————————————–29
Reading: Decoding———————————————————16
Reading Comprehension———————–6
Money and Time Concepts————————–8
This chart shows that it may be unrealistic to expect a young adult to leave the home at age 18. Perhaps additional growth and maturity may allow him or her to move out by 30. Also, parents should attempt to adjust expectations based on the developmental age displayed.
The actions of a person with FASD may be inappropriate for chronological age while still being appropriate for the developmental age. Expecting a person with FASD to correct inappropriate behavior can be frustrating for both the caregiver and the child. The following chart displays the chronological and developmental age expectations for a person with FASD. Though the chart only extends through the teen years, similar deficits exist through adulthood.

shared on Adoption Talk Link Up

Tuesday, September 19, 2017

We Have Hope Once More -Kiana's Lyme Disease Journey

Yesterday Dean and I took Kiana to a new Lyme doctor. A special thanks to everyone who prayed for us, God graciously answered those prayers! A few weeks ago, Kiana's previous LLMD told me there isn't anything more he can do for her as he isn't comfortable placing another PICC line since she developed a clot so quickly after her previous line was placed. The best he could do was to double her antibiotic and see her in a month. That didn't sit well with us, so we began looking for another doctor. How many times have we looked for doctors and therapist's over the years? Sometimes I wish I would have kept track, although it is probably good I didn't. 

Anyway, we had high hopes for one doctor but he failed to come through for us. Last week was particularly bad for Kiana and we realized we need to find a doctor now. Through much prayer, frantic research and phone calls, we found a doctor who, after hearing our story, agreed to stay after hours to see Kiana. Before contacting this doctor I had sent an email to ILADS asking for recommendations. I received a return email Monday morning and the new doctors name was included in their list. That felt like a direct confirmation from God that we were choosing the right path.

The problem many Lyme patients face is that the CDC claims that  Lyme disease can be treated with a round of antibiotic and that long term Lyme is very rare. We were told by a leading hospital that if the symptoms last longer than 4 weeks then it is a psychiatric problem versus a medical problem as the antibiotic will have eradicated the Lyme. This means that doctors who treat patients outside of the CDC's recommended treatment protocol, place themselves at risk, especially if the patient develops complications like Kiana did. As a result many Lyme doctors who use both medical and alternative treatment are not affiliated with any insurance companies, as that is often who will report the doctor. It is a complicated mess, one that often leaves Lyme patients hanging in limbo.

In light of all this, plus knowing Kiana needed help quickly, there was a lot hanging on this appointment. I was afraid the doctor wouldn't listen to our concerns, afraid she might brush us off or worse yet suggest Kiana needs psychiatric care. LymeMD explains why psychiatric drugs are typically not a good fit for a patient with neuro Lyme. However my biggest issue with these meds is the fact that I have been trying to wean off one for nearly three years now and have horrendous withdrawal. I refuse to put my child through that unless absolutely necessary. You can read about that here.

I have taken our children to countless appointments alone, several of them were even out of state. But for some reason this appointment intimidated me. I was so glad when Dean said he can take off work and go with me. Turns out it was good he did. He was able to remember many details of Kiana's illness which I had forgotten. The doctor checked Kiana very thoroughly and explained what she was looking for as well as what she found. She gave a list of lab work to get completed, along with supplements to add to Kiana's daily regimen, explained what our options might be as far as treatment depending on what the lab work shows and answered our many questions. 1.5 hours later we were ready to leave and for the first time in a long time we felt hope. Hope, my friends, is a wonderful thing, especially when it has been missing!

Kiana has another appointment next week at which time the lab results should be in and the records we need will have been faxed to the correct places - at least that is what we are hoping happens! Please continue to keep Kiana in your prayers, she was listening in to the possible treatment plans and was not impressed!

Monday, September 11, 2017

When Parenting Your Child With FASD Is Overwhelming - Living With FASD

If you haven't already liked Jeff Noble's FB page; Fetal Alcohol Syndrome Forever With Jeff Noble, I urge you to do so. He shares inspiring, educational quotes about FASD. These quotes are often just the thing I need on any given day. 

Here is today's quote:
The intensity of Fetal Alcohol can be so overwhelming, caregivers often have to trick their, "Fight or Flight" response several times just to get through a day. Remember your not the only one who feels like this. "Like" if you agree, "Share" if you care.

How well I can relate! Parenting children with trauma, especially when they have FASD as well, is a daily lesson in patience and squashing ones own reactions to the drama.

On Saturday Dean put driveway sealer on a section of our drive. He put a broom along the bottom side as a visual reminder for the children not to ride their bikes on it. Joseph wanted to get past that spot and had an awesome meltdown because he didn't know how to do so. I told him to go through the grass and he started crying and screamed that he isn't allowed to drive through the grass, so what is he supposed to do?!? I felt my blood pressure rising because this was totally irrational. I forced myself to calm down and speak slowly and distinctly. Eventually I helped Joseph understand that he is allowed to ride his bike through the grass and there is nothing to be so upset about. I have no idea where he got the idea that he isn't allowed to ride through the grass, so I chalked it up to FASD brain.

A few minutes later he started up again. He was bashing his precious bike into the porch and yelling that we should get rid of the stupid old thing because it is just a piece of junk! I went out to investigate. Turns out he wiped out going around a turn to fast which made him cross. He wasn't back on his bike very long before Kobi walked in front of him and made him wreck again. I couldn't get through to him so I took his hand and we went for a walk. He was wailing and my blood pressure was rising again. The walk helped me but he was as angry as ever when we returned to the house. He wanted to get rid of Kobi and put his bike in the trash. 

When Joseph gets overwhelmed, over stimulated or over tired, look out! Everything and anything will go flying, including his words. I get so tired of it happening over and over again. When I hear him start up yet again, it is tempting to go into fight mode.

When your child has meltdown after meltdown over seemingly irrational happenings, (having several children who do this only compounds the problem) it is so tempting to join in their tantrums. Don't ask me how I know!

Sometimes it feels like all I do is defuse rages, go to great lengths to avoid meltdowns and talk little people off the ledge. It is essential to keep your cool because your child WILL regulate off of you. However no matter how essential it is, it is still incredibly hard to do. Jeff's post this morning was just what I needed. Somehow the reminder that I am not in this alone made all the difference.

So if your child is yelling, melting down or raging, I get it, you aren't alone!

Friday, September 8, 2017

Don't Ask My Child To Fly - Living With FASD

September 9 is National Fetal Alcohol Awareness Day

What is FASD - Fetal Alcohol Spectrum Disorder?
- an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may physical, mental, behavioral and/or learning disabilities with life long implications. -FAS DPN

The majority of my readers are the parents of children who either have FASD, are suspected of having it or have behavioral/mental/emotional disabilities. In light of that, I am not going to write post on preventing FASD. I was going to highlight some of the difficulties and unique challenges those with FASD and their caregivers may face in life, but I came across this poem and it describes parenting a child with FASD, perfectly!

Don't Ask My Child To Fly

Don't ask my child to fly
for he has no wings.

Don't ask my child to see the glint on the eagle's beak,
for his vision has been diminished.

Don't ask my child to remain calm amid the din,
for her ability to screen out the noises has been taken away.

Don't ask my child to be careful with strangers,
for he is friendly with everyone and prey for the unscrupulous.

Don't ask my child the "settle down,"
for the clock which works for you and I, does not exist for her.

Don't ask my child to not play with the toys of others,
for he has no concept of property.

Don't ask my child to remember you tomorrow,
although you met today.

Don't ask my child to heal your wounds,
for her hands cannot hold a scalpel or sutures.

Don't ask my child to meet the challenges set by society,
for you have denied her the tools.

Don't ask my child to forgive you for standing idly by,
while he was being tortured in his mothers womb.

for he will,

        but he may not. 
               - Bruce Ritchie 1997

Imagine for a few moments if you will, a teenager/adult with no sense of boundaries. 

Imagine a child who has no sense of "stranger danger."

Imagine a teen/adult with no sense of property.

Imagine a child/teen/adult who has no idea what is appropriate in society.

Imagine someone who wants to fit in but due to his inability to understand world or read social cues, finds himself constantly searching for someone to be his friend. Often in that search, he meets up with people who willing take advantage of him.

These are the people who are easily exploited and can be lured into dangerous situations. This is why we as parents are so vigilant and why the future looks so scary.

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Wednesday, September 6, 2017

Can I Trust You With My Heart?

A brave young lady, Isabel Yates, wrote the following poem. The poem is a description of a hurting child but I feel it can be used to describe many hurting people in this world.

Children and adults who have suffered abuse and trauma will unconsciously ask, "Can I trust you with my heart?" Sadly, many times the person on the receiving end, fails to realize the significance of the question. When someone who has been neglected/abused asks for a few moments of your time and in your busyness you turn them down, they may feel they cannot trust you with their heart.

We need to be kind and respectful when people share their heart. You are the recipient of an incredible gift. When your heart has been broken and trampled, you do all you can to protect it from further pain.

Sometimes people will share unspeakable horrors, it will make your stomach clench and bile rise in your throat but be careful that only empathy shows on your face. If someone feels their pain is too intense for others to hear they won't share and they need to be able to talk freely in order to heal.

Cry with the hurting ones. Tears are a universal language.

People need someone to walk beside them as they explore the unknown. Go with them, hold their hand, check in with them and above all assure them that you are there. Then be there!

Sometimes the pain is more than someone can bear. They need you to hold their head above water, lest they sink. Sometimes this means physically standing by them until the crisis has passed, sometimes it means making decisions for them, other times it means being strong and holding them accountable despite the pain.

If someone shares their grief, handle it as the precious gift that it is. When someone confides in you, they are trusting that you will be respectful, careful and loving as you help carry their pain.

Sometimes a person will not know why or exactly what they are grieving. They may throw out vague hints, or they may be visibly sinking, it is our responsibility to reach out in love and walk beside them. You never know how many lives you may save, how many hearts you may aid in healing nor how many hearts your compassion may touch.

Walking alongside the hurting is not easy but the blessings are immeasurable!

Monday, September 4, 2017

Happy Birthday Lia

Happy Birthday Lia!!!!

                                  How you have grown!

Lia's long awaited 6th birthday finally arrived! Her siblings were almost as excited as she was. One child said we should have more children so we could have birthday parties more often!

Cake, ice cream and a pogo stick made her day special, but best of all was the special box and video phone call from her birthmom.

We have an ongoing relationship with Lia's birthmom. Many people find the thought of an open adoption scary but it has been such a blessing for both Lia and Dean & I. Knowing her birthmom loves her has been a source of comfort and security for Lia, and I believe it has helped her bond with Dean and I. She considers us mom and dad but her birthmom has a special place in her heart, which is right and good. Rather than feel threatened by it, Dean and I have encouraged that relationship. Her birthmom has become an extended part of our family and we feel honored that she encourages Lia to love and respect us. We are blessed! The following poem doesn't exactly describe our situation, but it touched my heart and I trust it will touch yours as well.

Once there were two expectant mothers.
One carried and cared for you beneath her beating heart.
She became your Birthmother.
The other carried the hope of you within her.
She became your Mom.
As the days passed and you grew bigger and stronger,
your Birthmom knew she could not give you all you needed after your birth.
Meanwhile your mom was ready and waiting for you.

One day your Birthmom and your Mom found each other.

They looked into each others eyes and saw a friend.
Your Birthmom saw the life your Mom could give you.
Your Mom saw how much your Birthmom loved and cared for you.

They decided that what you needed was both kinds of love in your life.
So now you have two families, one by birth, one by adoption.

And you have a home where you can get:
 your questions answered,
your boo boo's bandaged,
your heart aches soothed,
and much needed hugs.

And a place where you can find:
answers to your questions,
your image in the mirror,
a part of yourself,
and much needed hugs.

Two different kinds of families,
Two different kinds of love,
Both a part of you!

- Brenda Romanchik

Thursday, August 31, 2017

One Month Of Home School

Tomorrow marks four complete weeks of home school. For the most part, we are enjoying this new phase of life, although there are days I feel positively smothered! One day when I was second guessing our decision to home school, I read over some emails I sent to a friend last fall. I quickly decided that yes, we did make the right decision! 

   A year ago Joseph ran away - as in down our long drive and onto the road where a neighbor stopped him, he was melting down at school, refusing to work and spent his evenings raging because he was overstimulated. This year he is much calmer, in fact I think he is as emotionally stable as he was during the summer. Of course we have days where the work doesn't go so well. On those days I have him do only the bare minimum and then try to catch up another day. I need to email our supervisor and see if we can revamp his curriculum. His testing showed he was ready for 4th grade but the books are proving a bit too difficult which makes him frustrated. 

Kiana and Tristan are also doing well with home school. We had, and will continue to have, some rough spots but all in all I think it is a good fit for our family at this time.

We cleaned out a small bathroom/storage room and Dean put in some shelves and a filing cabinet. Now I have a place to store all my books and school supplies. That closet made school much more fun for me. I had been keeping all the books in a box and it was frustrating digging through the stacks trying to find the correct book and answer key. Now I go to my shelf and flip through the books until I find the correct one.

The children continue to do most of their work at the kitchen table with the exception of tests which I have them  do in their bedrooms. I used to try to do housework while they did their school work but soon gave that up. Now I sit at the table with them, answer questions, grade their lessons and remind certain people umpteen times to, "Keep at your work!"

I like the flexibility home school brings to our schedule. If we were up late the night before I can let the children sleep in or if we have something planned for the day, we begin school earlier. 

Thursday, August 24, 2017

Does TBRI Work For Children With FASD?

Dean and I have been attending series of video training's on TBRI  by Karen Purvis. In the first training there was quite a bit of talk about rewiring the brain. In essence the brain can be rewired to heal from trauma when you meet the child's emotional needs with empathy, and creating felt safety. This sounded great and I have seen it work, especially for Lia, but Joseph is another story. No matter how much TBRI Dean and I implement, Joseph still has rages and meltdowns. According to Karen Purvis, once you begin meeting your child's emotional needs, healing will start to take place. So why hasn't it? Isn't TBRI for children with FASD? If it is, why isn't it working for us? And of course the question I always ask myself, "Is it me?" So I went to my FB support group and asked this question:

 "I don't want to start an argument here but I am curious...last night we were watching Karyn Purvis/TBRI and she was saying how you can rewire the brain etc. Now I know FASD is not hopeless and there is always opportunity for new pathways to grow but am I correct in saying that TBRI is NOT going to heal our children with FASD? If not, why not? Most people rave over it, but quite honestly, it leaves me feeling discouraged in regards to our son, kind of like it is my fault he is not getting better."

I was literally trembling in my shoes as I awaited a reply because TBRI is held in high esteem among foster and adoptive families and for good reason, it works!

The responses I received gave me a great deal of food for thought and I was greatly encouraged. Here is a paraphrased version of the replies:

1. FASD is organic brain damage thus not necessarily "repairable." TBRI will probably not be able to improve cognition, as it can for certain cases of trauma. Once the trauma is dealt with a child can then learn and catch up to his peers, but it will cut back on the frequency and duration of rages and meltdowns.

2. The brain damage of someone with FASD is different than that of someone who suffered other forms of trauma, because the brain impacted by FASD was damaged from the beginning.

3. TBRI can help prevent some of the secondary mental health problems caused by FASD.

4. TBRI is beneficial in creating new brain paths but the original damage will still be there.

5. The myelin sheath around the neurons in our children's brains are damaged or missing altogether so they will "short out," regardless of what is implemented.

6. Connections can be made. While these connections may not be perfect, they are progress nonetheless.

7. TBRI like all other forms of therapy will need to be modified to meet your child's needs. 

These answers helped me sort out my muddled thoughts and put things into perspective for me.

Here is one of the ways we have modified TBRI to fit our unique needs:

When Joseph has a meltdown we respond empathetically (or at least we try to!) then send him to his room because he needs quiet and zero stimulation to calm down. Sometimes I will sit by him, especially if he is so out of control he isn't safe by himself, but as a whole when he melts down he goes to his room. 

I encourage you to visit this website: Attachment and Trauma to learn all about TBRI. If you have a child with FASD and he or she doesn't seem to respond as readily to this type of therapeutic parenting, don't become discouraged or blame yourself like I did. Instead modify the training to meet your child's needs and reap the rewards!
Like my FB page: Tales From Our House, to receive new posts and view the links I share on trauma, attachment and FASD

Saturday, August 19, 2017

When Mom Perpetuates A Negative Cycle - Living With FASD

Joseph and I can quickly get into a negative cycle. Children with FASD want to be loved, they crave their parents love and affection. Sadly, because of the damage done to their brain, they perceive the world differently which results in frustration for them and their parents.

Yesterday was a hard day at our house. I don't know exactly why. It may have been because it was Friday and the children didn't feel motivated to work, maybe it was the weather or maybe we were all bitten by the grumpy bug. Whatever it was, no one was feeling especially loving and kind.

Joseph has been having a difficult time keeping at his school work. I originally planned for the children to do their work in their bedrooms but everyone wants to work at the kitchen table. This is fine, except for the children who are easily distracted by what goes on around them. I tried having Joseph do his work at his desk in his bedroom but his "out of mom's sight, means I can do what I want," style of thinking takes over and very little work gets done. This means I am constantly reminding him to keep at his work, which frustrates us both.

Since Kiana's Lyme diagnosis, she and Joseph have been pretty much on the same level socially, emotionally and behaviorally so Joseph has come to view her as a peer versus and older sister as he did two or three years ago. As a result, they are both doing the same level of work and he keeps an eye on how fast she is getting through her books. Rather than work faster to keep up, he melts down and refuses to co operate.

These are just a few of the things that were making me feel a tad bit frustrated with Joseph. I knew better and as his mom, I shouldn't have reacted but I did. He sensed my frustration and tried to be extra loving and helpful. This resulted in disaster since thinking for himself taxes his brain. He tried to take care of Lia by helping her or telling me when he thought she was misbehaving. Of course whatever he was supposed to be doing wasn't getting done because he was using his brain power to "take care of Lia."

If I dropped something, he was scrambling or falling off his chair in his haste to pick up the object for me. Which was thoughtful but if my pen is right by my chair I can pick it up in less time than it takes for him to get off his chair, make several attempts at picking it up, climb back on his chair and find his spot in his workbook again. I smile back my frustration and we go on.

He kept popping up with wild idea's of things he could build - "Dad could buy me an engine and I could...." Or, "I can get all the rocks out of the yard when you mow and put them in my play area. I could use them to build a rock wall so Kobi couldn't knock it over..." 

He was extra exuberant about everything. When I told him to put the coffee cups away, he bounced up and cheerily whacked them together, breaking one. "Ooops, guess that is one less cup!" He announced cheerily while I gave a deep sigh. I knew he was trying really hard to be happy because he sensed I was frustrated with him.

He offered to do things for me, which was fine except that he failed to complete what he was told to do. He corrected everyone and everything until his siblings lost any semblance of patience with him and sadly, I wasn't far behind.

If I praised him or gave him a smile, he tried to be super helpful and things deteriorated even further.

I knew what was wrong, I knew I needed to get myself back on track before he could function again but due to various things, I was having a very hard time doing that. So we stumbled and bumbled our way through the day. I gave him a good night kiss and sent him off to bed vowing that today would be better. 

As I type this, he just finished his chocolate breakfast cereal and offered me the "chocolate milk" that was left in the bottom of his bowl. "You may have this for breakfast mom!" I sensed he was still trying extra hard to be kind so that means I need to fill his love tank and get him settled emotionally or this day will be no better than yesterday.

I think the reason this behavior gets under my skin so badly is because I know that I am the one to blame. If I can be kind, loving and gracious despite Joseph's challenging behavior, we seldom get into this cycle of him trying extra hard to please me and as a result, making things even worse while I get more irritated as the day goes on.