The Joy of Persistence and Perseverance

The Joy of Persistence and Perseverance

“To send him or not to send him”

I remember last year when Lady Mandy begin talking about sending Gabriel to preschool.  My initial reaction was one of disappointment and disagreement.  I didn’t feel he was ready to go the school, even if for half a day.  I didn’t think the school system or teachers where ready for Gabriel to attend school and really it was about me being ready to release just a little of the fatherly oversight and control.

Granted he had been going to the Carriage House for play group on Friday’s but he still was not excited to go.  He enjoyed outside time and gym time, but had not quite gotten into the organized/structure part of play group.  When I would go in to pick him up, if they were sitting having circle time (singing, reading stories, etc.), Gade was some where else in the room doing his own thing.  He may glance in the direction of the circle if something caught his attention, but for the most part Gabriel stayed to himself.

He did visit the Sunshine Room at the YMCA a few times and he really seemed to enjoy that play time while we worked out or the girls were swimming.  But again that was a play group and not organized/structured learning.  When we would take a break from what we were doing and peak in on him, he would be doing his only little thing, while the other kids ran around, climb around and just goofed around like kids do while playing with each other.  So for me to send him to preschool was like a no brainier…NO PRESCHOOL FOR GABRIEL…at least not until he turned four.

Not only was Mandy talking about sending him to school, but she was talking about putting him on a bus…”what you talking about Mandy?!?”  Not a hop, skip and a jump type bus ride, but a thirty-minute ride downtown.  “What?!?”  “Have you lost your mind!!!”  There was no way I was going to agree with putting my baby boy on nobody’s bus, especially when neither of our girls have ridden a bus since being in school.  It has never been up for discussion when it came to the girls riding a school bus, but now you want to put my little man on a bus.  BANANAS!!!

Well the day comes for Gabe’s first day at preschool and his first bus ride.  Bus comes and we put him on the bus and he looks back at us like really you’re going to let them take me on this big yellow thing…without you…your not coming…really.  I had to turn and head back to the house and overcome with emotion and tad bit of anger…I punch the wall in the hallway.  Thank God not hard enough to cause any damage to the wall or injury to my hand.  A childish reaction I know but damn was I concerned about what was going through his little head and heart.  Knowing he didn’t understand what was happening, didn’t know where he was going and didn’t have us to walk him through that first day of new beginnings.

Now the first class that he was in was a typical class with a typical teacher, who seemed to be stuck in her own individual way and style of teaching.  She did not seem to want to change or adjust to individual learning style of a special needs student.  Gabriel is a very smart little boy, but does not learn as a typical child does.  He is an active and visual learner and needs a structured and sectioned off learning environment that not only is conducive to learning but provides a since of knowing.  Having a class room sectioned off for special needs children help them to know exactly what to do in a certain area.

                                                         

The first class did not work at to say the least.  But then someone slipped up and told Mandy that there was an Autistic Class with a young teacher who had her Master’s in Special Needs Education.  What, okay that’s the class Gabe needs to be in!!!  Mandy set up an appointment to visit the class and meet the teacher and when she left she immediately called me and was so exacted she could hardly stand it.  This was the class she keep repeating, from the layout of the room, to the different centers and areas for learning, to the ratio of student to teacher and aides, even the personality of the students already in the class.  She was excited and she even said the teacher was excited about her job and welcoming Gabriel into their classroom.

After the first day of being in Ms. Becky’s class, he came home happy, spelling, singing a new song (row, row, row your boat).  He started sleeping better and became more social.  On his daily sheet his teach commented on how smart and sweet she thought he was.  His morning and afternoon bus driver’s and monitors think he is sweet and say they love to hear him talk and sing (even though most of the time they don’t understand and word/sound that comes out of his mouth).  The bus driver said she thought is was so good that he was talking so much, even though you have no idea what he is talking about.

I know what he is thinking about on the way home in the afternoon, a couple of blueberry waffles and the new stackable alphabet blocks his momma bought him that he loves soooooo much.  I stacks them over and over again and in a few different variations.  After school he will spend hours in his room play with his blocks and reading his books and when we go in to check on him, he nice and politely say’s “Bye, Bye” and waves for you to close the door and if he is close to the door he will close it in your face. 

On day the afternoon bus monitor didn’t understand what Gabe was singing on his way home and I know immediately it was row, row, row your boat and so I joined in and sung along with him (as we toasted his waffles).  I was so proud and so happy he wasn’t just making his usual happy noises but my man was singing and sung the entire song.  Granted there were words I couldn’t quite understand, but it was row, row, row your boat.  He’s got to songs in his song book now…You Go Gabe!!!  PRESCHOOL RULES!!!

Comfort and Joy

“Monsters and Scary Peas”

“Comfort each other and build one another up, just as you have been doing.” (I Thessalonians 5:11)

Life is full of scary stuff and this world and can be a very scary place for typical folk, so I can only imagine what some days and some moments must be like in the heart and mind of one living with autism.  Children with Aspergers or Autism are said to be suffering from neurosis or a neurological disorder, which is a class of functional mental disorders that involve different levels of distress and anxiety.  Though the turn “neurosis” is no longer being used by scientist, medical or mental health professionals, it is still very much real in the heart and life of many of our children.

Children living with Neurosis present different forms of neurotic behavior and a variety of phobias.  For example, anxiety, sadness/depression, anger, irritability, mental confusion, low sense of self worth.  Behavioral symptoms such as phobic avoidance, impulsive and compulsive acts, lethargy.  Cognitive problems such as unpleasant or disturbing thoughts, repetition of thoughts and obsession, habitual fantasizing, negativity and cynicism.  Interpersonally issues like dependency, aggressiveness, perfectionism, schizoid isolation, socio-culturally inappropriate behaviors.

The emotional distress or unconscious conflict is expressed through physical, physiological and mental disturbances, which sometimes includes physical hysteria.  Trust me when I say that those moments and times of fear and anxiety can be trying for parents who have a million and one other things on their plate.  But Mandy and I have learned that there is great joy in those moments of comfort, regardless of how inconvenient the timing may be, life has presented yet another opportunity for us to be doers and not just hearers of the wisdom found in God’s Word.

Lady Mandy and I have worked very hard to provide structure and routine for our family, which is important for a typical child’s healthy development and growth, and even more important for a child with autism.  We have always started bath and bed time round the same time since Zari (our 8 year old daughter) was little and it continues to this day.  Every night with the exception of a few (weekends, holidays and other special days), dinner starts between 5:30-6:00 pm, bath begins between 6:30-7:00 and bed time is between 7:30-8:00.  We believe schedule and routine have been key in how well our children have been developing with the many different challenges they deal with on a daily bases.

We allow them to wind down with a snack (Gabe has sow milk every night) a relaxing movie before it’s lights out and lullalibies on, rocking everyone to sleep (except young Gabriel, because when we turn his movie off, we turn on a box fan in his closet, because that’s how Gabe sleeps best.  Don’t ask me I can’t explain it but it works wonders for Gabriel’s sleep habits.) then Mandy and I have a few hours to lay in one another’s presence before it’s time for us to say goodnight.  Your typical kid has what we call the “pop up syndrome”, where when you have them sit/lay down, for whatever reason, “they pop right up”, at random times for very random stuff, well autistic children generally have an even harder time sitting still when it’s time.

Well the other night during that time when the peace of God falls on the Green House, Mandy and I heard Lady Maya in the baby monitor sing Jingle Bells, Batman smells, Robin laid an egg, oh what fun it is to ride in a one horse open slay…(well she didn’t say the Batman and Robin part, but that would have been really funny).  Shortly after her joyfully beautiful rendition of Jingle Bells, we heard her crying.  Lady Mandy sprung into action (cause truly she is the Wonder Woman of Autism…if anyone needs any advice, guidance, or support “living beyond the diagnosis”, talk to Mandy) and went and provided the needed comfort for Maya’s little heart, shortly afterwards, Mandy returns to our room laughing and holding her belly.  She said Maya told her she was upset because she was scared of the “Monsters and Scary Peas” that where in her bed. 

Scary Peas, what kind of stuff it is?!?  I can understand being scared of a lot of things and monsters is one (I watch River Monsters on the Animal Planet or maybe it’s the History channel, anyway, I know monsters are real, Jeremy has come face to face with many of them in rivers across the world), but “Scary Peas”, come on Maya get a grip (is what my insensitive side of me wanted to say), but the Spirit within quickly helped me humble myself (by getting down on Maya’s level and try to see and understand her fears and anxieties from her point of view and inner conflict) and provide her with the comfort she needs, which generally is doing something (like squeezing her really, really tight until she laughs, they love deep pressure)  or saying something to make her laugh or singing, whistling, or tapping out one of her many favorite song (she’s such a beautiful soul, so sensitive and sweet).

Aftering settling back into that beautiful place we call “our time” for a few minutes, the alarm sounds again (Maya crying in the baby monitor), the emergency response team is dispatched (I do disaster dispatch at Red Cross…can you tell).  I respond to the call (because it’s so important for parents to share all the responsibility of raising their children) and Maya meets me at the door say, “Dada, Dada, the “Scary Peas”, are in my bed, I scared Dada!!!”  After helping her to calm down, by scooping her up into my arms and holding her tight and reassuring her that it’s okay to be afraid and Dada is afraid sometimes and her response was, “Dada scared of Scary Peas too???” 

I told her I wasn’t afraid of Scary Peas and she shouldn’t be either, because she is bigger that any pea that might come her way, she is stronger than any old pea and she could squish the pea, eat the pea or she could tell those peas to keep on rolling cause she don’t like peas or better yet…she could feed the peas to her bears.  She said “my bears Dada, what bears???”  I surround her with the stuffed animal bears she had in her room at the time and told her that her bears loved her and they would eat the scary peas if they came back.  In a soft sweet voice she said “Ah, thanks Dada, you’re my very best friend (I mean so, so sweet, she makes your heart melt).

After putting her back on her sissy’s bed (Zari was visiting family in Knoxville, TN and Maya seems to find comfort laying in sissy’s bed when she’s away), her eyes begin to close and shortly after that she was sound asleep.  There is joy to be found in the act of comfort, joy for the giver and receiver.  And I do find so much joy in comforting our children, but especially Lady Maya, because of all she has suffered and grown through, such a sweet soul deserves nothing less!!!  If you have sometime share a little “Comfort and Joy” with a Child with Autism and spread the word “April is Autism Awareness Month”. 

Peace and Blessings

Oil of Joy

Isaiah 61:1-3

"…God has anointed Me…to console those who mourn in Zion, to give them beauty for ashes, the Oil of Joy for mourning…”

Oil in the scriptures is a physical representation of God’s Spirit and Anointing.  The Anointing of God is simply His Presence and Power actively working in a person’s heart and life bringing about His Will, Word and Way.  The purpose for the anointing is to bring impartation to a believer’s heart (I Samuel 16:13), emancipation to a believer’s soul (Isaiah 10:27), consecration for a believer’s spirit (Exodus 30:25-29) and preparation of a believers life (Ruth 3:3) to be used for God’s glory, honor and praise.  The Anointing brings joy to the heart and life of a believer providing strength to endure and over come all that would keep us from accomplishing God’s will. 

Psalm 45 is a royal wedding song of love that celebrates the joy and blessing of human marriage.  The song’s cultural setting is that of an ancient, eastern royal court and the writer begins by saying his heart was overflowing with a good theme and his tongue was the pen of a ready writer, as he recited his composition concerning the Groom and soon coming King.  He said the King rules His Kingdom with a Scepter of Righteousness and because He loved righteousness God anointed Him with the Oil of Gladness (verses 1-6).  So it is when we commit ourselves to endure the Rough Road of Righteousness that our lives will overflow with joy and gladness.

John 16:22-24

“Now you have sorrow…I will give you joy that no one can take...that your joy may be full…”

Jesus shared with His disciples how they would experience intense sorrow over His death but it would be turned into joy when He sent the Holy Spirit.  He said the coming of the Spirit would be more profitable to believers than Him in the flesh because the Spirit lives in us.  The Spirit, who is our Comforter, doesn’t merely help us transition from sorrow to joy but transforms our sorrows that they become a source of joy for us.  For clarity Jesus used the example of a pregnant woman whose sorrow during labor is transformed into joy at the birth of her child (John 16:16-21). 

Like a mother’s joy at the birth of her baby, Jesus promised the disciples their joy would be full, unspeakable and unable to be taken away, because of the Presence and Power of the Holy Spirit.  The same Spirit poured upon the disciples is the same poured upon our lives, rubbed upon our souls and smeared upon our spirits to give us strength and power to perform God’s good works (Ephesians 1:13, 14).  The Anointing was poured upon us to make us God’s Anointed that we may go out into the world and Anoint others with God’s Oil of Joy and bring comfort to their heart and life.

Peace & Blessings,

Charles and Mandy

Count It All Joy

Gabe’s Alphabet Marathon

Gabriel Ilias is our 3 year old son who though he is very vocal, at this point in his development he is “non-verbal”.  Meaning he has not developed the ability to form many words.  He is always talking, but very little is understandable.  To Lady Mandy and I, sometimes it honestly sounds as though he is speaking another language, his own language or his own form of pig latin.. 

Gabriel loves to watch his little baby einstien videos and I would say his favorite is the one called “First Signs”.  The video has people and puppets teaching the young viewer basic words in sign language, ie.  hello, milk, help, mommy, daddy, etc.  Gabe has always been very expressive with his hands and it is almost like his hands have their very own personality. 

A lot of times his hand activity seems as if he is trying to communicate the things he has seen and learned from the First Signs video.  The only problem with that thought (hope) is most of the time is hands move in the same motions (hands about eye level, fingers opening and closing, like making a fist, and his hands and wrist turn in/out, in/out, in/out very fast, as he is humming, singing or just talking loudly.

One thing that Gabriel has learned to love to say and say pretty good (and for us he is doing great!!!) is his alphabet.  Gabe looooves his ABC’s, he loves his alphabet blocks, his alphabet books, alphabet videos, his ABC shoes, he loves to hear them, see them and write them.  The only thing about the latter is he hasn’t quite grasp the concept of writing (he’s to excited about seeing and saying them to focus on writing them).  Gabe will literally follow (most times chase behind) us with his doodle boards, chalk, pencils, crayons, makers, whatever, for us to write, recite and rewrite the alphabet.

The other day he “made” me write the alphabet about 15-20 times with chalk in the back yard.  Each time I would finish he would show up with a different color of chalk, open my hand, put the chalk in my hand, pull me to the spot he wanted me to write and start speaking Gabe Latin, with the only understandable word being A-B-C.  He and I wrote all over the ground, we wrote on the garage, we wrote on the easel, on the slide and he even wanted me to write on the dark wood lawn chairs (I didn’t think his momma would appreciate that very much, so I didn’t). 

When we started running out of space to continue the Alphabet Marathon, I took a piece of blue chalk and wrote A-B-C on his hand and forearm (it wiped right off), at which point he looked up at me (as only Gabriel can) as if to say “no man that’s not right…momma told me no writing on yourself…we write on paper”.  After attempting to expressing that with his hands, he nice and politely put the piece of chalk in my hand and pulled me once again towards the ground to began the Alphabet Marathon all over again. 

Though I had other things to do (like get dinner ready, finish the laundry I had been trying to finish for 2 days or preparing the house for bath and bed time), I counted every moment as a moment of joy.  I was able to stir up the joy that is within heart because our non verbal, autistic son, one, loves his abc’s and two he is willing and working hard to communicate the best way he knows how, that he finds much joy in seeing us write, recite and rewrite the alphabet…and for Gabriel it never gets old.

The next time you feel tempted to be inpatient or get frustrated with a little autistic one about their obsessive tendencies, please remember James 1:2 says, “Count it all joy when you fall into various trials (things that try your patience and faith), knowing that the testing of your faith produces patience”.