Holding My Breath

I am holding my breath right now.  Me and probably many of my fellow parents of children with special needs.  We can't help it.  We hold our breath for the first few weeks of school because we are afraid our children will struggle.  Or worse.  Transitions are hard for kids with special needs and the beginning of a new school year can be one of the hardest transitions of all.  New teacher, new schedule, new clothes, new classmates, new bus driver......you get it.  New=hard.

I have discovered, though, that it might be time to breathe again.  Angie has hit the ground running and she is excelling at school.  She is learning to read!  And the end of the school year last year, she had (maybe) one or two sight words.  Angie's brain is absolutely on fire and she is a total rock star!  What happened, you wonder?  I don't, I know for a fact.

Angie has an outstanding team of people supporting her at school.  They have spent hours preparing her program for the year and they truly love her as their own.  They are invested.  Also, Angie started receiving treatments of the Anat Baniel Method after we heard Anat Baniel speak in Denver in July.  She has had two intensive week-long series of sessions and the results are beyond anything we could have imagined.  The treatments have truly awakened parts of her brain that she was not activating before. If you do not know about the Anat Baniel Method, please go to her website and read the testimonials and watch the videos (http://www.anatbanielmethod.com).  The treatments are effective for a wide variety of special needs.  I promise that you will be impressed.  We are total believers and we will continue to access the treatments for Angie.  If you live near Clatskanie, I encourage you to come to a ABM workshop here on October 25th and you can contact me if you are interested.

But back to Angie........I am considering starting to breathe again.  Once again, she has risen above our expectations and has proven her resilience and strength.  She is so amazing.  I am grateful for the privilege of her presence.  Every. Single. Day.  I still have so much learn and I have no doubt that she will teach me:)

After the Waiting

If I could define our parenting of Levi over the past year I would call it Waiting.  First, we were waiting to see if moving him home from his group home placement was the right decision (It was not).  Next, we were waiting to get supportive services in our home and at school to address his educational and behavioral challenges.  Soon after Levi moved home, he became the victim of a crime and was a witness in a long investigation.  Although we were promised that the offender would be punished, we are still waiting.

The longest, hardest period of waiting was when we realized Levi needed more supervision and support than we could provide in our family home despite our dedicated efforts.  We reached out to the Department of Developmental Disabilities and they moved into action, but there were no placements available, so again we were waiting.  During this time, Levi's behaviors became increasingly dangerous and he became involved in the juvenile system.  We did not know what the consequences would be for him and again we waited.

Finally, in July, there was an end in sight and we entered the beginning of the end of our waiting.  Levi was able to move into a group home in Hillsboro where he can be safe and his needs can be met.  It is perfect.  The staff is invested in his success and the four other boys in the home are a good match for Levi, unlike his previous placement.  So what happens After the Waiting?

After the Waiting, Levi is able to do the activities he loves in an environment that is safe.  He is swimming, riding his scooter, playing outside, and THIS:

Levi will be having drum lessons, which has been a long-held dream for him.  His confidence is growing as he is in a safe, supportive environment and is experiencing successes on a daily basis.  We are able to visit often, talk daily,  and to enjoy day trips with Levi.  There will be home visits, too, but for now Levi is where he needs to be.

After the Waiting, Levi will start school at Oak Grove Academy in Gales Creek.  Levi and I visited the school yesterday and like his new home, it is perfect.  There are 30 students in the school and he will be in a classroom of 7 students.  The school provides individual programming for children in grades 6-12 who have special needs.  I am so excited for him and he was happy to learn that one of his housemates will be in his class.  Oak Grove has a highly qualified staff, increased supervision, daily individual and group counseling, and electives like sign language, cooking, and gardening.  We love our local school district, but its budget and resources just cannot provide a similar setting.

After the Waiting, we can breathe easier and release the anxiety that waiting brings.  Having a family member with Fetal Alcohol Syndrome is stressful and emotionally exhausting and there is healing that needs to occur for all of us.  The waiting was hard for Toby and I, but it had to be even harder for Levi.  I am a firm believer that FAS (along with Reactive Attachment Disorder, which thankfully Levi DOES NOT have) is the single most awful, heartbreaking, and PREVENTABLE disability in existence.  Out of necessity, Josh and Angie have received less than their share of our attention as we have managed the consequences of Levi's disability and that will change.  After the Waiting, we can look back and see that everything that happened was part of God's plan for Levi, and for us.  He was not one minute late.  After the Waiting, we are excited what is next for Levi and for our family.  

Back to School

Our teachers and students begin to go back to school tomorrow.  The district operates a staggered-start schedule so Angie and Josh will have their first school days later in the week.  Tonight my mind is on the upcoming school year and what it will bring for our family.

The professionals on Angie's IEP team (I think there are about 12!) have spent hours preparing her program for the year.  With the wealth of information we gained at the conference this summer, our efforts are refocused.  The team has been tireless, researching at home, asking questions and suggesting creative ideas of what might work best for her.  We could not ask for a more committed, involved team and we do not take our good fortune for granted for a minute.  Angie's education and her safety are in good hands.

So why am I so anxious?  I cannot remember if this is normal for me at the beginning of the year or not.   I am grateful for all I have learned about the needs of children after hemispherectomy surgery this summer but I also have a new awareness that Angie is not "out of the woods" and she never will be.  While the surgery has certainly given her an exceptional quality of life, that could change at any moment.  I realize now, that I had become complacent, even cocky, about her condition.

Too many children continue to lose their lives to Sturge-Weber Syndrome and each tragic event is terrifying and heart-wrenching.  Many of them had well-controlled seizures before they passed away suddenly.  Recently, a child we met at the conference this summer had a serious seizure after over 7 years of freedom from seizures.   Another child underwent craniofacial surgery this week after his skull began to collapse.  Serious complications can occur even 30 years after surgery.  We are never "out of the woods".  What was I thinking?

Last night, Angie suffered a fall in her bedroom which resulted in a large knot on the back of her head where she hit her headboard.  She was alone when it happened and she does not know how or why she fell.  I am fighting myself to not think the worst about her fall-that it could have been precipitated by a seizure.  I am making myself crazy, I know.  I know.

So now what?  I cannot stay here for long or I will make myself crazy.  Transitions are always hard for Angie so I am prepared for a tough couple of weeks at the beginning of the school year.  She will need extra support.  I have to shift my focus to all we have to be thankful for and try to leave my anxiety behind.  Gratitude has to be the answer.  And I am grateful so grateful, for all of you who help us to celebrate Angie's victories and also support us through the hard days and nights.  Grateful for 5 years without a major seizure.  Grateful for a child who has taught me to appreciate the miracles around me.  Grateful for wonderful people in Angie's life who are committed to loving her and protecting her when we are away.  Grateful. So grateful.

When You Least Expect It.......

Have you ever been bogged down by doubt, disappointment, regret, and despair? Sometimes life just delivers blow after blow and it feels like it will never end.  I don't want to camp out here and the details don't need to be shared, but this has been my family's life this year.  We have had it.

But then, when you least expect it, there is more joy than you can possibly contain.  Things start to work out and slowly but surely hope is restored.  All of a sudden, or maybe bit by bit, you can imagine a day when you smile more than you frown and worry is no longer a constant companion.   Sometimes it takes a month and sometimes a year, but joy always comes after the storm, right?

We have found it.  There have been large and small developments that have moved us past the disappointment but I would have to say that much of the hope we have found is due to Angie's amazing accomplishments this summer.

I wrote about the TOP Soccer program for children with special needs in a previous post.  Angie was thrilled to play soccer for the first time this summer and I would not hesitate to say that the high school soccer players who taught her were equally blessed.  Tonight, Angie was able to be introduced as a special guest at the opening high school soccer game.  As you can see, she was pretty excited:

Angie started another series of Anat Baniel Method lessons this week and the results are far beyond our expectations.  Since her last series about four weeks ago, she has continued to surprise us with new skills and abilities.  It is as if the lessons have brought her brain out of a long hibernation and now anything goes.  She is using her right arm and hand in new ways almost every single day. But the motor changes are not the only gains she is making.  Her cognitive awareness and abilities are growing too.  She is naming sight words, using a much larger vocabulary, and interacting with us on a much deeper level.  Her provider, Kathy, is amazing and I could watch the sessions all day long........she is that good!  And, it doesn't hurt that she and Angie have formed a strong connection to one another.  Angie LOVES her time with Kathy!

We have crossed one more hurdle towards finalizing Angie's adoption.  This one was frustrating for me as our family's situation had to be presented before a neutral committee so they could decide if we could be officially appointed as Angie's adoptive family.  As the date of the meeting approached, we were contacted repeatedly by a DHS caseworker and grilled about facts, figures, and irrelevant information with the premise of "building our case".  To be honest, I was offended.  Angie has been in our home since the day we picked her up from the hospital over eight years ago and if we have not proven our devotion to her by now we never will.  We had already participated in a 3-hour home study months ago.  Angie is the heart of our family and facts and figures will never define our relationship.  The child welfare system is broken and the resources should instead be used to protect endangered children, not put our family under a microscope.  At the end of the day, we were "chosen" and now we can move forward through the remaining bureaucracy to become Angie's forever family.

Angie is set to start second grade next week and I feel that this could be her best year yet.  We have so much new information to support her education and she is just blossoming before our eyes.  So much joy.  I met with her school team to plan her schedule this week and she is one lucky girl to have such a caring, creative team to support her at school.  If you are a parent of a child with special needs you know how very uncommon this can be.  We do not take it for granted and we are grateful for another reason to hope.

I am grateful for the joy we are discovering and for the end of the dark days, at least for now.  The new school year always feels like a new beginning and for us this year it is especially true.  There is so much to hope for and the waiting, though hard, is worth it.

The Best Summer

Our girl is having the best summer!  When I think back to the child who completed first grade in June, I can hardly believe she is the same person.  Angie has grown in so many ways this summer.  Since we returned from the conference in Denver, Angie has had a series of lessons in the Anat Baniel Method.  This treatment has literally changed our lives.  If you are interested in the ABM philosophy and its ability to change the brain in both children and adults, you can check out this link: http://www.anatbanielmethod.com.

Since Angie had her first series of lessons, she has begun to recognize her right arm and hand and her ability to use them.  This is so huge!  Angie now hugs us with two arms and holds our hand with "Righty".  She is beginning to use move her right arm when swimming.  None of this was possible before ABM.  Besides the motor changes, we are also seeing cognitive growth.  Angie is more aware of her environment and she is learning and taking in information at an amazing rate.  We are extremely encouraged by these developments and we have scheduled another series of ABM lessons in Portland for the end of this month.

We continue to move through the adoption process, as one might walk through frozen quicksand.  If it were up to us, Angie would have been adopted forever ago, but most (ALL) of the process is out of our hands.  Next week, her case will be presented before an adoption committee who will decide if we should be chosen as her adoptive parents.  Don't even get me started!  If she was not meant to be with us after eight years in our home, someone messed up a long time ago by leaving her there.  God must have thought I needed to practice my patience, but we will get there eventually and it will be worth every minute of waiting.

Last weekend, Angie spent time with Kirsten and Jordan.  She went to the zoo, played at a splash pad, and shopped at the Saturday Market.  Toby and I enjoyed a rare weekend with NO CHILDREN at home.  We are so blessed to have adult children who embrace Angie and love her as if she were their own.  She thrives on spending time with them and I think she appreciates the break from her "boring" mother.  I am proud of the empathy and compassion my children have, not only for Angie, but for anyone who experiences challenges or is in need.  They are exceptional people and are better for having Angie in their lives.  I would dare to say that about everyone who knows Angie.  

We will meet with Angie's school team soon to plan her program for this year.  Angie has a great team who is anxious to help her any way they can.  I am hopeful that this will be one of her best years yet, and again I am grateful.  We could not ask for a more responsive, creative team of people to care for and to support Angie at school.  God has provided for all of her needs, in every way, every single day.  Who could ask for more?

One Week

One week.  So much can change.  I do not want to make this post about sadness, but about hope, and about a family that loves their child so much that they would do anything for him.

Early this Spring, Levi's behaviors began to escalate.  Because of his diagnosis, he is prone to making poor, even dangerous, decisions due to his lack of impulse control.  He is unable to predict the consequences of his actions or to plan what he would do in an emergency and he is vulnerable to victimization. At age 14, his challenges are not new but the consequences that can occur are much more serious than when he was 5 or 6. Despite his caring, compassionate nature and eagerness to please, his behaviors began to put him, and possibly others, in danger.

When we realized that our home, the community, and Levi's school were no longer a safe environment for Levi, we worked with our disability services provider to make a plan for him to move to a group home.  We agonized, denied and justified for months before acknowledging this was the best option for Levi. We explored all options and we accessed every service available to try to keep him at home, having multiple providers in our home each week. A family does not and cannot come to such a decision without serious turmoil.

Now, though, we have hope.  We declined the first placement that was offered for Levi because the home was not a good fit for his needs.  Three weeks later we learned of another placement option and everything we heard sounded perfect for Levi.  Levi was prepared for the move and he was included  in the planning, but it still came up very quickly and they were ready for him to come within a week.  Last Thursday, Levi moved to what will be his home for now in Washington County. 

It is hard to put my feelings into words as we adjust to a new normal at home, but it is not my feelings that are important, it is Levi.  He has been offered an opportunity to learn and grow in an environment that is safe for him.  He will attend school in a large district with the resources to meet his needs.  Levi has become active in the community and he has daily opportunities to learn important life skills.  He has new friends with common interests. He is already thriving.

Levi is our son today as much as he was last Thursday.  We will have home visits, family vacations, phone calls and date nights to keep him close.  We will cheer for his victories and will support him in his new interests.  This is not the end of our story as a family, it is just the beginning.