You’ve come a long way, baby!

Yes, Justin.  You HAVE come a long way!  The last fourteen months since his official diagnosis of PDD-NOS have been nothing short of a miracle.  And while miracles sometimes imply instantaneous and complete improvement, miracles also come as the result of months of hard work and navigating unfamiliar territory while asking God, Himself, everyday for guidance.

As we prepare for our second Walk Now for Autism Speaks, I felt the need to update everyone who has loved, prayed for, worked with, and supported, not only Justin, but my husband and I.  And yes, while most of the time I am “okay”, there are times that I need every bit as much support as Justin.  I need to know that people understand.  I have to know that people who know us have gained some insight into this disability that they didn’t have before.  I must see that Justin’s Journey hasn’t all been for nothing.  And I have to make sure that our story–the good side with progress beyond expectation, and the importance of early intervention–gets out there to every parent who needs to hear it.

I made a short video that begins with Justin around Christmas of 2010.  In this video you will see a few of Justin’s struggles.  First, you will see his echolalia–pretty common in kids with Autism Spectrum Disorder.  You will also see one of his “screaming spells” that we experienced fairly regularly.  I have to say the daytime spells are much easier with which to deal than the night-time spells!!  At his worst (just a short seven months ago) we would deal with the same type of screaming episodes four, sometimes six, times a night.  He could never tell us “why”.  Holding him, talking to him–nothing helped.  It was honestly one of our hardest times.  Sometimes I wasn’t sure that Nate and I were going to make it through!  And you will also see an example of one of Justin’s “stims”.  This type of activity helps him to stay calm, reorganize his “sensory” issues and, well, I’m not really sure what else.  I just know that there were times he “needed” to do it.  And, although many parents/therapists/teachers disagree on whether or not to allow this type of behavior, sometimes I let him.

And now I want to show you a quick video I made of where Justin is today!  These clips shows his love of music (quite a variety I must say)!  The clips show just how far his language has progressed!!  Most importantly, the clips show how much he loves and enjoys life!!  For Justin, the world is no longer a scary place with crazy textures, sensory discomforts, and weird impressions.  He is learning daily how to deal with those stresses and how to enjoy life.  Like was stated in his one-year birthday poem, he is here to stay–just try and stop him!

I just wanted to mention two important parts about the video.  First, his echolalia really helped him when it came to singing!  At the time I recorded him singing the “Baby” song he still had great difficulty with back and forth conversation and could not answer questions like “What is your name?”  That is the reason I included that very question later in the video.  Justin was about 39 months old before he was able to answer the question “What is your name?”  So of course I am so proud and love to ask him now, just to hear him answer!

Where are we now?  Justin is in the Special Needs PreK (SNPK) class at the local elementary school.  He rides the bus–yes, the “short bus”–go ahead, say something!  The short bus pulls up to my house twice a day.  Sometimes a car has to pull up and wait while I place him on the “up” step.  If you place him on the “down” step it messes up his day.  The wonderful, underpaid, and so loved and appreciated bus monitor buckles him into his carseat.  I admit I have felt a range of emotions, but embarrassment was never one of them.  If my three-year-old son can overcome his fears and get on that bus everyday and be taken to a place (without his mom) where loving, but tough, teachers challenge and stretch him almost beyond his limits, then what right would I ever have to feel embarrassed that the short bus was pulling up to my driveway?  So, I choose to be proud.  Proud that I recognized a problem, proud that I did something about it, and proud that I am going out of my comfort zone and doing what is best for my child.  You know, I think Justin and I have both done a lot of growing this year!  And I didn’t really have to choose to be proud.  Waving “bye” to my baby while watching his teary-eyed face looking out at me through the bus window mouthing “bye Mommy” as it drives away–well, I would challenge any mom not to be proud.

Next year Justin will remain in his Special Needs PreK class, full time this year, and he will be attending the same school that his older siblings attend!  Justin is so excited!  So, I will have all four of my children at the same school, all on the same schedule!  Not sure what I am going to do with myself when all four kids have been picked up by 7:30 a.m. every morning!  Hmmm, maybe catch up on all that sleep I lost while getting up with Justin multiple times a night over the past three years!!

Speaking of sleep, Justin is doing much better.  A change of schedule, different routine, or being around a large group of people during the day will predictably cause a few wake-ups that night.  But we now know when to expect them, how to handle them, and we even have some medication we can give him on nights when we expect him to have a difficult time.  Nate and I have almost started feeling human again.  Uninterrupted sleep should never be underestimated!

We still have some areas to tackle!  I have to admit that potty training is right near the top of my list.  Unfortunately, Justin doesn’t seem to prioritize the same way I do!  I’m hoping by his fourth birthday we will see some progress as far as potty training goes.  It’s pretty common for kids on the spectrum to be delayed in potty training.  I’ve heard that it is more of a sensory issue.  With Justin it is certainly not a cognitive issue, so I guess I just have to be patient and see what happens!

Justin is getting private OT at home and will continue until at least next February.  His Occupational Therapist is working on coping with anxiety that comes mostly from sensory issues.  She will also continue working on his adaptive skills such as dressing, washing hands, and of course, toileting.  His fine motor skills are still somewhat delayed, and he has weak hand muscles.  Actually, he has low muscle tone all over–also know as hypotonia.  I am in the process of getting another private PT evaluation to address these issues.  He was receiving PT at school, but, since the school system only addresses needs that affect Justin’s access to a “free and appropriate education” and not medically-based needs, he no longer qualifies for PT with the school system.  And in June he will finally see a geneticist.  I’m not sure what to expect from the appointment, but I was told by his neurologist, pediatrician, and a friend that he should be evaluated by a geneticist.  So, we will go and see what she has to say!  These “big” appointments can be very overwhelming and stressful for Mama, so I am thankful to have a supportive family with me all the time!

As you could tell from the video his speech is great!!  We are still working on “conversation” and socialization with peers.  It is not uncommon for kids on the spectrum to function very normally within their own family and have great struggles outside of that familiar circle.  This behavior describes Justin perfectly!  Of course, Justin’s varying ability to socialize makes me look to the future and wonder what his struggles will be.  But, Nate and I are prepared to provide Justin with whatever he needs–whether it be public school, private school, or home school.  His educational needs may vary from year to year, and I will just go with whatever he needs at the time.

My love for Justin has multiplied throughout the last year.  My respect for this little three-year-old who simply continues to rise to every challenge presented to him is beyond what I feel for some adults.  He is such a sweet, funny, and articulate little guy!  His “quotes” keep us all laughing, and I barely remember those days when he had nothing but echolalia.  I know our struggles are not over, but we are prepared.  Nate and I, Justin, and the rest of our family will overcome.

An excerpt from the poem written by his Nana for his first birthday:

For as it is written, the just shall live by faith
And our Justin will do no less.
Go forth little guy and take your place
Our lives and your family to bless.   

 

One in 88–since the statistic of “one in 150″ has increased since our first post fourteen months ago.  I don’t care about the numbers–Justin is one in a million to me!  Wow!

One in 150. . .

. . .or is it one in 166, or one  in 110?  Or is it the latest statistic I heard for the State of Georgia–one in 98?  The end number doesn’t really matter because whatever it is, as far as my life and his is concerned, Justin is the “one.”  Autism Spectrum Disorder has officially touched my family, and, although one in 150 is a statistic, my Justin is not.

I guess I knew it was coming.  God had been preparing me for months.  Justin has been delayed across the board since he was born.  Yes, he was four weeks early.  Yes, he spent the first twelve weeks of life trying to remember to breathe.  I tried to make allowances for those situations, but by the time he was eighteen months old I could no longer ignore the delays.  Justin had said, “Daddy” a few times when he was around fifteen months old.  But then he stopped–and didn’t say another word until after he was eighteeen months old.  But he did cry–a lot!  At the first meeting with the Babies Can’t Wait diagnostician I remember telling her, “He just cries.  No talking, no pointing, no waving–just crying.”  Not sure why I didn’t pick up on it before then.  I had been slightly distracted with helping to care for my terminally ill father-in-law and then taking care of my family after Granddad passed away.  But then, also, I sometimes feel like I just woke up one day and realized that Justin was behind.  And, I will admit, it scared me.

So our journey began.  Doctor visits, some fabulous–some just preying on desparate parents.  Money spent (thousands).  Evaluators observing him and making their notes.  And now therapists coming to our home and making my baby struggle to balance on an exercise ball that terrifies him and then making him reach for a toy.  Every week they make him stack blocks, sort colors, thread beads, identify pictures, answer questions, and stay engaged and attentive longer than any two-year-old should be expected.  The expectations placed on Justin have not been lowered–they have been raised.  And so I sit on my hands, bite my lip, fight my tears, and let the Speech Therapist, the Occupational Therapist, and Physical Therapist do their job.  All in all, they are some of the smartest and most insightful professionals by whom you would ever want your child to be served.  Early intervention by Babies Can’t Wait ( the State of Georgia program that serves babies 0 – 3 years) saved my boy and minimized the impact of ASD on his life–spread the word to any mom who has doubts about her child’s development.

Recently, at age two and one-half years, and after one more extremely in-depth (and expensive) evaluation, we got our answer– Justin is ”one in 150.”  After being evaluated by (another) child psychologist, considered one of Georgia’s best in the field of Autism Spectrum Disorder, Justin was diagnosed with PDD-NOS.  Basically “Pervasive Developmental Delay - Not Otherwised Specified”.  Some call it “high functioning autism,” although, technically, there is no such diagnosis.  The psychologist expects the diagnosis will be changed to Asperger’s Syndrome when Justin reaches four or five years of age.  Asperger’s Syndrome, also an Autism Spectrum Disorder, is also often referred to as “high functioning autism”.  Autism is the catch-all term and the one most recognized by people.  And our son, Justin, is the ”one”  in 150 children who has it.

One in 150–wow.  Can you imagine the outcry if this rate was that of childhood cancer?  How much funding would go into research?  I say that as an emotional and uneducated (in the area of research)  mom.  I really have no idea how much funding goes into childhood cancer reasearch or into autism reasearch.  I just think that ”one in 150″ sounds like a really high number.  Considering that they just don’t really know the cause of autism, that the immunization theory has been totally debunked, that there is no real cure, and that the statistics are on the rise (especially for boys)–well, sorry–one in 150 is just too high.

Where do we go from here?  First of all,  Justin’s diagnosis is not our destination, it is our GPS.  It will tell us which path to take.  It helps us understand where there may be roadblocks and shows us any detours we need to take.  And because the “fastest route” is not always best for a child with ASD, it will likley be the scenic route!    The fact that Justin has been receiving therapy since he was eighteen months old is awesome.  The benefit of early intervention is supported by research and seems to give ASD kids the best outcome.  And we have done that.  In fact, the last year of my life has been dictated by therapy schedules and doctor appointments.  It has been exhausting, but I am thankful that our family has been in a position that I was able to take on this job.  We would never have been able to get this last year back, and I thank God He has made it possible for Justin to be served in this manner.

The plan.  We are looking at adding some private therapy to the therapy he already receives from Babies Can’t Wait. My wonderful husband, Nate, works for Home Depot. I am ashamed to admit that, until recently, I did not know that one of the co-founders of  Home Depot is Bernie Marcus, who just happens to be a huge financial supporter of the Marcus Autism Center here in Atlanta.  So we were happy to discover that Home Depot has written a clause into their insurance plan to cover treatment of autism!  This benefit is huge considering that Georgia is one of the States where insurance companies are not required to cover treatment of autism.  We also have a little farm less than five miles from our house that offers all types of therapy for children with different delays. When Justin reaches age three (this coming September) he will be able to receive hippotherapy (therapy with horses) at this farm if we so choose.  I’m not sure how Justin will react to a big horse, but hippotherapy is supposed to be great!!  At age three, Justin also becomes eligible for public school services–a fabulous option which we will greatly consider.

Right now I am trying to decide how much of an advocate for Autism that I want to be.  Walk Now for Autism Speaks?  Or just educating myself so I can educate others?  Should we all get t-shirts made and do the annual walk for Autism in May?   Hmmm, not sure yet.

Here are some Autism facts (copied and pasted from autism.about.com) These facts are not medical, but from my research seem to be a pretty good summary of some important points.  (Scroll down past #10 for my “close.”)

1. Autism Is a ‘Spectrum’ Disorder

People with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic. A disorder that includes such a broad range of symptoms is often called a spectrum disorder; hence the term “autism spectrum disorder.” The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another’s perspective, etc.).

2. Asperger Syndrome is a High Functioning Form of Autism

Asperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname “Geek Syndrome”).

3. People With Autism Are Different from One Another

If you’ve seen Rainman or a TV show about autism, you may think you know what autism “looks like.” In fact, though, when you’ve met one person with with autism you’ve met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays – and that’s it.

4. There Are Dozens of Treatments for Autism – But No ‘Cure’

So far as medical science is aware, there is at present no cure for autism. That’s not to say that people with autism don’t improve, because many improve radically. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people. Children with autism may receive many types of treatments. Treatments may be biomedical, sensory, behavioral, developmental or even arts-based. Depending upon the child, certain treatments will be more successful than others.

5. There Are Many Theories on the Cause of Autism, But No Consensus

You may have seen or heard news stories about possible causes of autism. Theories range from mercury in infant vaccines to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.

6. Children Rarely “Outgrow” Autism

Autism is usually a  lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But a person with autism will probably be autistic throughout their lives.

7. Families Coping with Autism Need Help and Support

Even “high functioning” autism is challenging for parents. “Low functioning” autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

8. There’s No ‘Best School’ for a Child with Autism

You may have heard of a wonderful “autism school,” or read of a child doing amazingly well in a particular type of classroom setting. While any given setting may be perfect for any given child, every child with autism has unique needs. Even in an ideal world, “including” a child with autism in a typical class may not be the best choice. Decisions about autistic education are generally made by a team made up of parents, teachers, administrators and therapists who know the child well.

9. There Are Many Unfounded Myths About Autism

The media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such “always” and “never” statements simply don’t hold water. To understand a person with autism, it’s a good idea to spend some time getting to know him or her – personally!

10. Autistic People Have Many Strengths and Abilities

It may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you’ll ever meet.
———————–

So, we have quite the journey ahead of us!  But we are on the right path and steadily making progress.  Justin makes us smile everyday with his “quirky” little behaviors.  He has become very verbal, and his communication skills are improving every day. The other day his dad asked him where his shoes were.  Justin responded, “they right here–in the shoe bakket–daddy!”  Not bad for a kid who was non-verbal just a few months ago!  Justin loves his brothers and sister and has become quite “bossy” with them knowing that he often gets his way! Justin’s accomplishments are things that we celebrate as a family.  They are that much sweeter knowing how hard he has worked.  Justin continues to work hard and is always willing to undergo another session of training.  He is a very smart and determined little boy–these traits and his high cognitive function will carry him far!!

One in 150.  And I am blessed beyond all I can ask or think to call this “one” mine.  Wow.

2010

I have been trying to write this since Dec 30th!  I wanted to give a 2010 a quick review and proper close.  But I spend 90% of my life in survival mode and . . . well you can figure out the rest!  So here goes . . .

2010 began on a sad note for our family.   We lost Nate’s dad (Grandad) early in the year.  It still seems strange to think that Bob isn’t here, and the holidays were hard.  We miss you Grandad!

We got 2 new nephews/cousins this year!  Brayden was born in Jan and Levi was born in Sept. (on Grandad’s birthday, God is good like that).  And we had many, many boy cousins added to our family this year! 

Nate and I celebrated our 10 year anniversary.  We were blessed with4 days of babysitting so that we could go on a very needed vacation.  We got 4 nights ALONE at the beach.  It was awesome!!  I did have my tubes tied several months before our trip so we didn’t come home with any new little Arwood’s. :)

J1 started 3rd grade this year.  He is doing great and he teacher says he is very sweet and helpful in class?  I didn’t correct her, I am just thankful he seems to be behaving at school!  He loves to read and joined chess club and chorus this year.  We enjoyed watching him preform at his first chorus concert in Dec.  He got to play one of the special instruments and he chose the boomwhacker.  I’ll have to post the video here later.  I asked him how he chose the boomwhackerto play and he said “I just liked the way the name sounded!”  It turned out that the instrument was really cool and I think he had the cutest part in the concert.  J1 is also very into his clothes and his HAIR!  We have had quite the experience the past several months with his hair.  I had already decided that the hair thing was not a battle I was going to fight, and planned to give him as much control as possible.  Lets just say it finally ended with a bribe of a new video game if he would get a haircut.  Yea, I’m a good parent like that.  Anyway, the hair is somewhat tolerable, for now.  J1 is sooooo full of life that it is all I can do to keep up.  I pray everyday that I don’t somehow damage him with my lack of enthusiasm about his passion for life!  Seriously, he gets excited about everything!  A funny thing he recently said:  We were talking about everyone’s name, like grandparents and aunts/uncles etc.  J1 said, “I know what Papa’s name is!”  And I said, “What?”  He proudly said “Lockheed Martin!!”  You see, my dad calls from work everyday and well, you gotta love caller ID. :)

J2 is her sweet little self and has had a great year.  She started 1st grade and a friend to everyone.  No really, Jessi is friends with EVERYONE!  The few times I have visited her class she has this little group of kids following her around.  She is just so sweet and such a little mommy that all the kids want to be with her.  Of course the fact that she draws an individual picture for everyone in her class, on her bus, and a few extras in case she runs into someone she didn’t plan for, probably has something to do with her “following”.  She takes great care of her little brothers and when hurt or scared J4 will just as quickly go to her as he will look for me.  She is reading way above her gradelevel and I often make her practice by reading books to J3 and J4 :)   She started the year off taking piano lessons but we dropped off during the summer.  I hope to get them started back up soon, she was doing really well.  We took our first girl trip this summer when we went with Nana and Laura to Babyland General.  We had fun and hope to make the “girl trip” an annual thing.  J2 is always leaving little notes for us about how much she loves us.  I found this note she wrote to Santa where she listed each of her cousins and siblings and what she wanted Santa to bring them and why they deserved the gift.  It was so sweet!  And tonight after kissing her goodnight I noticed a sign she had taped to her door.  It simply said “Everyone Welcome”.  That pretty much sums up my sweet girl!

J3 had an interesting year!  In July he was diagnosed with farsightedness, accommodative esotropia, and anismetropic amblyopia.  Basically he is very farsighted, more so in one eye than the other and because of that his brain stopped using his weaker eye.  Considering I was convinced he had retinoblastoma when I took him for the appt (based on his symptoms of rapid onset strabismus and a white pupil in photos) his diagnosis was great news to me!  Of course within a couple days reality set in and I had to adjust.  When he went for his appt his vision was 20/200 in his weak eye.  He got glasses and we began patching his strong eye for 4 hrs a day.  It really wasn’t that bad.  I knew how serious the condition was and I just told myself that we were fighting to save the vision in that eye.  So wearing the glasses and patching pretty much was nonnegotiable.  He had his meltdowns and when he wasn’t watching I had mine.  It was very difficult to patch his good eye and have him beg and cry for me to take the patch off saying that he couldn’t see.  And because of what the opthamologist  told me I knew he couldn’t.  I put on my tough face and we pushed through.  We were greatly rewarded when we went back 4 months later and found out that with his glasses on his vision in his weak eye had improved to 20/30!  Nothing short of a miracle!  We now only have to patch for 2 hrs a day as maintenance and when we go back in May he may get to toss the patch for good.  J3 also began preschool this fall and is making great progress.  Up until now he has never shown any interest in drawing, writing, letters etc.  I do feel that his vision has played a role in that, but he is also just a boy and truly doesn’t care about anything like that!  But he is now showing some interest and even saw a letter J and said, “Mommy, that’s just like my name!”  I was so proud of him :)    J3 has a very cute way of talking and has some really cute sayings.  He will frequently tell me, “I wuv you Mom.  I wuv you more dan de earf.  Mom, what is de earf?”  And one day he was laying in bed with me and said “Mommy, I jus wanna way wight here an sweep.”  Who could say no to that?  J3 has also decided to make up for all the time that he was a sweet easy going kid.  I won’t go any further into that . . .

J4 is doing great!  He has made so much progress since last year at this time!  Considering last Jan. he wasn’t walking, talking, pointing, waving etc.  he has come a LONG way!  We have had a couple of appts with his developmental pediatrician.  Right now his official diagnosis stands as Sensory Integration Dysfunction, Anxiety Disorder and Language Disorder.  I guess we have moved on from speech delay because he now talks ALL the time!  His vocabulary is huge and he talks better than most 2 yr olds.  The difference is that a large part of his vocabulary is echolalia, so while he may be speaking in full sentences he isn’t really “saying” all that much.  But, just when I was getting very discouraged he has suddenly made great improvements!  His echolalia at home had greatly decreased.  And because it seems to flare up when he is with strangers or in a stressful situation it has kinda shown us that it may not be a true language “disorder” and may just be more a symptom of his anxiety.  So that is good news as far as I am concerned.  We have been trying the biomedical route to treat Justin and have seen success with some things.  He is going to be starting very specific vitamin and mineral supplements based on some blood tests.  And although we have tried some herbal supplement for his anxiety we have not seen an real results.  I had decided that he may need medication to help him get through some of his anxiety.  I was not completely sure, but thought I would mention it to his doctor.  Well, when we went in today the doctor told US she thought he needed medication!  So that made my decision easy!  He started his medication tonight and my goal is have him be able to tolerate a change in routine without being up all night crying, and to be able to stay for 15 minutes in the church nursery.  Hey, you gotta start somewhere!!  I will say that I feel that his aggressive therapy (he receives special instruction, OT and PT) has kept him “off the spectrum”.  The current research shows that children who receive early intervention have a much better prognosis than children who don’t receive any intervention until the age of 3.  The difficultly comes in that most insurance now recognizes the diagnosis of autism spectrum disorder and will pay for therapy.  This is making it difficult for kids who get early intervention, make great progress that keeps them literally steps away from meeting the criteria of ASD and who then age out of early intervention (at 3).  Justin has his IFSP meeting in March where we’ll be meeting with the public school system to determine if he will qualify for services for the coming school year.  I really have no idea what to expect and I am sure it will be stressful either way!  J4 has some really sweet and funny things that he does too!  His latest saying is “I mat.”  This is his way of saying he is mad.  This statement is usually followed by him carefully laying face down on the ground.  No other sounds.  He will then look up at you to see how you are responding.  It is really cute!  And the other day he told me “I love you, you my best boy”.  That is something I say to him several times a day and I loved that he said it back to me!!

Whew!  Ups and downs, laughter and tears.  Decisions and reactions, set backs and celebrations.  Goodbye 2010 . . . bring on 2011!

Where I’ve been . . .

I haven’t been blogging, obviously.  2010 has made it’s mark on my family in many ways.  There are great things . . . I have 4 awesome kids and one great husband, my husband has a job and we have a house and more blessings than we deserve.  But, there has been a cloud.  And I admit I have let myself stay under it.  I haven’t blogged because I can’t find any humor.  Nothing light and carefree to talk about.  Every thought and emotion I have is heavy, and I have been dragging it around for the last 6 months until most days I am out of breath.  I am traveling a road I am not familiar with and never took the time to learn about because I always thought “not me”.  I regret my lack of interest in this area now.  It is too much to catch up on, too much to take in now that I am on the journey.  The journey is this, I am fighting for my son.  Fighting for who he is and who he will become.  There is no time to waste, every moment must be accounted for and there is no rest.  You can’t rest when there is “something” that is eating away at the next generation of men.

My journey began approx 6 months ago.  Still reeling from the sudden, unexpected death of my father in law I was trying to get my family and home back in order.  It was then that I recognized some red flags.  Huh, red flags,  I didn’t realize how normal those words have become to me.  It was with Justin, 18 months old at the time.  I suddenly became aware that something was “off”.  He had no words.  I mean really, NO words.  Not only that but he had no communication at all.  No pointing, no gestures, no attempts to communicate.  Just crying.  Lots of crying.  He appeared to be a very unhappy child.  He was also very clumsy.  By clumsy I mean he would be walking and just veer off and walk into a wall.  Of course this could be vision related.  Right?  He even went through a spell where he refused to walk on certain floors.  I was convinced he had depth perception problems, and maybe he did.  But who would know, after all he couldn’t talk.  So, the appts began.  First with the pediatrician, then opthamologist just to make sure his glasses were the correct prescription.  Then we got the referral to Babies Can’t Wait, the Early Intervention for GA.  Never thought we (I) would be there. 

Evaluations started.  I was more concerned about his poor sense of balance and toe walking.  They were more concerned that at 18 months his imitaion skills were that of a 6 month old.  I was worried about his inconsolable crying and night waking.  They were concerned that overall he scored at the age of a 10 month old in communication.  So, we were given “services”.  Special Instruction therapist would be coming to our house once a week, sometimes more.  And Ms. Cindy entered our lives.  She began teaching Justin sign language and gave me daily skills to work on.  LOTS of work!!  Every skill was to be done 5 times a day and we kept a log.  Justin had to score at least 80% for 3 consecutive days to be checked off.  We slowly began to get some words.  We literally taught him how to point.  I mean using our hand to form his hand into a point gesture, and then teach him appropriate times to use it.  He was making great progress.  But there was more.

Other behaviors began to reveal themselves.  Rocking, to the point of having bruises on his back.  Mouthy behaviors that included taking bites of things made of foam and sticking his entire hand in his mouth.  He became more and more dependant on me and his routine.  Less ability to adapt to change.  He “needed” things, like to scrub his head on the carpet when he was upset.  His therapist said NO!  These behaviors were not “socially acceptable”.  Ahhh, another new phrase that has become all to common in my vocabulary.  I began to hear things like “In THESE KIDS . . .”  Huh?  Who are “these kids”.  Well, now I know.  Justin is one of “these kids”.  “These kids” have similiar problems with no real known cause. ” These kids” are our future and yet without aggressive intervention they may not be able to function in society. 

We were instructed to not allow these behaviors.  So I began my vigil.  “Justin, NO rock!”  “Justin, NO mouth!”  Sometimes I said it 100 times a day.  I redirected, and then redirected again, and then again.  The reason being is that these behaviors tend to escalate in “these kids”.  I was able to see that when I tried to put Justin in preschool.  He cried continously while he was there.  The teachers had to call me everyday.  His “mouthy” behaviors escalated into him biting himself.  One day when the teachers called me and I went back to the school I found him crying, rocking, and with bite marks all over his hands.  I went and told the director, “We’re done”.  I had to pull him out that day.  Too much regression.  I felt like everything we had worked for, all the ground we had made, was lost.  Just like that.  Honestly, I cried.  Not because of what had happened but because I didn’t know when it would end.  What about next year?  Would he ever be able to go to preschool? 

And I forgot to mention Ms. Shirley.  She is his wonderful OT, another “service” he qualified for.  She comes weekly and brings her big orange ball for Justin.  He is somewhat obsessed with balls, all except for Ms. Shirley’s.  He hates her big ball and cries when he has to sit on it for his “exercises”.  He shakes, cries, and says “all done”, but there is no rest for him.  At 2 yrs old there is more required of him than there is of many adults.  And I have to force him to do it.  Inside I just want to grab him off the ball because it scares him, but I can’t.  I can’t look at today, but I have to look ahead to where he needs to be.  I constantly have to remind myself, I am not raising him to live with me, but to be a self sufficient adult.  So, we sit on the ball.  Sometimes together, sometimes just Justin.  When he shakes outwardly I shake on the inside, uncertain of our future.

That is a very brief summary of what has taken place.  Justin is his own little person.  Very loving and sweet with his family.  He is spoiled by me and his dad and we don’t apologize for it.  He has many other issues that I haven’t even begun to go into here.  There really is no point.  There are the people who look at him and say “There is nothing wrong with him!”  And I agree, to me he is perfect.  But I also am raising four kids and it would be negligent of me to ignore the “red flags”.  I have been encouraged by his therapists to seek a formal evaluation.  I have researched and have decided to go straight to the top.  Justin will be seeing a developmental pediatrician in Nov.  This doctor has been around for about 30 yrs and is considered one of the best in Atlanta.  She doesn’t accept insurance and we will be required to pay the “full” amount up front.  Is is a stretch, yes.  A sacrifice, no. 

What will the evaluation bring?  I can’t say for sure, but I have an idea.  I am spending my time reading and preparing.  One thing I do know is that God gave me Justin for a reason.  And I may appear to be in hiding, but it’s really just because I am processing and planning.  Planning my attack.  I don’t for one minute believe that God spared Justin’s life when he was 7 wks old  and gave him a full recovery only for him to have to face and struggle with the challenges of autism spectrum disorder.  Whatever comes, I will be there.  And I will see him through.

Where would I be?

I just had the conversation with someone (Rachel :) ) about where I would be if I had never had kids.  This was my answer (with a little added to it since I have had more time to think).

I would have gone back to school for my master’s.  I would most likely be a pediatric nurse practitioner and would have chosen to work in an urgent care or ER setting.  I would probably either still have my dog Ebony or have another “new” expensive puppy that I treated like a child.  Nate and I would probably have more house than we need and it would be furnished with the best of everything.  When we were not at home hosting cookouts or work parties we would be traveling.  I’m sure by now we would have visited several other countries, and probably own a small home on the Gulf of Mexico.  I would probably never have to put my hand in a toilet to clean it and most of our laundry would be done for us.  I would watch what I wanted on TV and sleep in every chance I got.  Nate and I would enjoy quiet dinners at the restaurant of our choice and then go shopping, just because we could. 

But, I would NOT be as happy as I am today.  I have gladly given up those things for the chance to raise the four beautiful children that God has given me.  I don’t know why I was blessed to be the mom of the 4 J’s, but I will take the blessing!!  And the question of where would I be?  I don’t know, because without the family I have now I wouldn’t be me.

You’re DEFINITELY a mom if . . .

Instead of  “You might be a redneck if . . .”  I decided to change it up a little.

Now, this will apply to all moms, but I have to say that the more children you have the MORE that you will be able to relate.  AND, if you happen to have had your children close in age you will get it even more.  To all the moms, in case you ever wondered, You are DEFINITELY a MOM if . . .

You have ever fished a toy out of the toilet . . . before it was flushed.

You have ever had to scrub poop off the walls.

You have ever gone grocery shopping and long about the chip aisle you realize that you hadn’t looked in a mirror all day.  And you’re not really sure if you brushed your teeth.

Your children all have clothes from Old Navy and Gap and your newest article of clothing is a t-shirt from Walmart.

You wore your new Walmart t-shirt 4 days last week because you truly didn’t have anything else to wear.

Once it reaches 8 pm you find yourself trying to justify why it’s really not important for children to have a bath every day, . . . or three.

Sometimes you decide to let your kids play in the hose in the backyard because then you can count that as a bath, right?

You have ever found yourself saying the most ridiculous things.  Such as:

     “If you fall and bust your head open you are going to get a spanking!!”

     “Son, we don’t put goldfish(crackers) in our ear, or in our underwear.”

     “What do you mean you have an apple seed in your nose?”

     “What are the rules about standing on the kitchen counter?  Right, you only do it when Mommy asks you to.”

And of course,  You are DEFINITELY a mom if . . .

Your lunch consisted of leftover pb&j, crunched up cheetos, and apple peels.

You spend 2 hrs preparing for a 30 minute outing.

In that 2 hrs you forgot to pack any extra diapers, a change of clothes for the one kid who has an accident (you have something for the other 3) and you forget your cell phone and to put new checks in the checkbook.  What exactly did you spend the 2 hrs doing?

And last (for today).  You are DEFINITELY a mom if you can’t remember the last time that you went to the bathroom by yourself!!

Love to all the awesome Moms and Moms to be out there!!!

Newborn Twins!

I had the opportunity to photograph these beautiful twin newborn girls!  I LOVE newborn photography and hope to do many more newborn sessions in the future!

They did so good!  Slept the entire time and let me move them however I wanted.  I think the bean bag and heating pad helped :) !

Those sweet cheeks!!!  Just want to squeeze them!

Aren’t they just gorgeous??  So sweet.  I can’t wait to photograph them again!

1 Yr Cake Smash

I was happy to be able to do Madison’s 1 yr cake smash session!  It was as much fun for us to watch as it was for her to do! 

Pretty girl, right before it got messy! 

Hmmmm, what is this?

WOW, this is good!!

Look at those eyes!

Can we do this again?

And that is how a cake smash is done :) !

“Not Me!” Monday (with pics)

Mckmama- Not Me Monday
Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to www.mycharmingkids.net   to read what she and everyone else have not been doing this week.

This is NOT my foot!

I have wanted at tattoo for many years now, but I did NOT decide on my last night at the beach to go ahead and get one.  I would NEVER do something so permanent!!

It is purely coincidental that the tattoo in the picture has 3 blue flowers and one pink.  Even though that would work perfectly for my 4 kids, that is NOT my tattoo!!!

Getting a tattoo would be crazy!  That is why I, an almost 36 yr old mother of four, would NEVER get one!  Nope, NOT ME!!!!

I’m just not that kind of mom . . .

I try to be.  You know, the kind of mom who can do little science experiments, grow things, teach her children about the circle of life.  But I’m just really not good at it.  At all!

My latest attempt (catastrophe) at teaching my children began when Nana showed up at our house with little containers each holding a helpless caterpillar.  It sounded very simple.  You just watch the caterpillar for a day or two and he/she will make a cocoon.  You then remove the lid from the container and carefully place it in some type of cage and wait approx 7 days for the beautiful butterfly to emerge.  You then wait about 48 hrs for the wings to be mature and then you release the butterfly.  Easy, right?

It started well.  We had “Pepper” in one container and “Hot Dog” in the other.  Both sitting in the kitchen window sill.  A day or so passed and I noticed that both had moved up to the lid, a good sign.  Within another 24 hrs two perfectly formed cocoons were hanging from the lids, right on schedule.  Piece of cake!

Now I just had to remove the lids and somehow secure them to the top of the bug habitat that I had previously bought for my kids.  Thankfully I did not allow my kids to be witness to this horrible transfer. 

So there Nana and I were.  In my kitchen with two bug habitats ready and two small containers of cocooned caterpillars.  You know, you really shouldn’t mess with nature.  These bug habitats didn’t really have any way to attach the lids to the top but I had a plan.  See, once I removed the lid I thought I should just be able to tape it to the top net.  Except I didn’t have any good tape, but I DID have a roll of painters tape (I just repainted the playroom).  That should work fine.  I opened the first lid and very carefully, held it up as I rigged up some type of double sided tape thing and carefully (with shaking hands) stuck him in his new bug habitat home.  Whew, one down one to go.  I removed the second, except there was a problem!!  His silk strands were stuck to the side of the container and when I removed the lid his cocoon became loose from the lid!  I started to panic.  I mean a cocoon won’t work if it’s not hanging upside down, will it??  I carefully lifted the lid and had to “surgically” cut each silk strand loose from the lid.  It was rough and the result did not give me much hope.  The cocoon was barely attached to the lid.  Any movement and it would have broken loose.  And then . . . came the movement.  I DROPPED the lid!!!  Seriously.  I dropped the lid with the cocoon barely attached.  All the way to the floor.  I screamed and dove to pick it up.  My heart rate was elevated and breathing was shallow.  I was killing an innocent caterpillar or butterfly or whatever it was it this moment.  My hands were shaking as I stared at what I was convinced I had just killed.  This poor cocoon. 

I took a deep breath.  Pull it together Mom.  Everyone is counting on you!!  Especially this tiny life in the cocoon.  So, having no other real options, I reach for the super glue.  I HAD  to reattach the silk strands that were holding the cocoon to the lid of the plastic container so that I could secure it to the top of the bug habitat.  Just as I had done with the other cocoon.  So I did it.  I super glued the silk strands to the lid.  Nana was helping and saying that the fumes were going to kill the butterfly.  But what choice did I have???  If  I didn’t do it he was going to die, and if I did do it he might die.  And if he died I was going to have to face my kids and tell them I killed their butterfly!!!!  What choice did I have???!!!??? 

So I got the silk strands secure with the super glue and managed to pull my finger free from the super glue without pulling the silk strands back down.  And then while rigging up the same double sided tape thing the unimaginable happened, again.  I dropped the cocoon!!  AGAIN!!!  I shrieked and again dove to the floor to rescue the poor cocoon.  What was wrong with me?  Why couldn’t I manage to hold this cocoon in one hand while building  a tape apparatus with the other?  This was all going so wrong and the butterflies were going to die and it was going to be my fault.  Why was I even given this responsibility?  I mean I already have to take care of 4 humans everyday.  Did I really need to add a couple of helpless cocoons to that?

The next 2 minutes are a blur.  Somewhere in the midst of shaking hands and shallow breathes I managed to get the cocoon in his super glued lid taped to the top of his bug habitat.  I was spent.  And now the waiting period begins.  Approx 1 week from the time they cocoon a  beautiful butterfly should emerge.  And my kids were counting on it.

Fast forward about 6 days.  I come downstairs that morning and as I am fixing the babies cups I look at one of the habitats in the window sill.  The cocoon is empty!  And there is a beautiful butterfly in the habitat!  Success!!!!  I was so happy!  Until I realized that the new helpless butterfly was stuck.  TO THE TAPE!!!!  The painters tape I had used to secure the cocoon to the top of the habitat had become a trap!  This new baby butterfly and her tiny delicate legs were STUCK to the tape.  I was in panic mode.  Strange thoughts crossed my mind.  Can a butterfly live without legs?  If I were to reach in and cut off the tips of her leg would they regenerate?  Maybe I can just release the whole thing, butterfly and tape?  I couldn’t believe this!!  I was killing a butterfly.  Thank goodness the kids were at school and didn’t have to see this.  I was distraught.  So I did the only thing I could do.  I took the babies and went to Target.  No need to hang around and watch the devastation I had caused.

When I returned butterfly #2 had emerged!!  This was a huge relief because this was the super glue butterfly!  And she was NOT stuck to any tape!!  Yay!  I had not killed this butterfly.  I moved over to inspect the poor stuck butterfly and guess what?  Somehow the butterfly had freed itself from the tape!  I had two perfectly healthy butterflies!  What a relief!

The next 48 hrs I “misted” their wings.  I place tiny dishes of premixed nectar in their habitats.  I stared intently as they stretched and shook their wings.  Before I knew it, it was time to release them!

The kids were thrilled.  Their butterflies had hatched and they were ready to release them.  I was outside with the camera, of course.  J1 opened the door to Hot Dog’s habitat and the butterfly flew away before I could even take a pic.  J2 took her time (at my prompting) and I got a few pics before “Pepper’ flew away.  It was bittersweet.

Bittersweet, and a MIRACLE!!!  I can’t believe those things survived!!  I have to say it again.  I’m just not that kind of mom!  I can’t do the cool experiments.  I don’t grow things.  I can barely  keep things alive.  Seriously, I had to super glue a cocoon in place and rig up some sort of tape thing that then trapped a poor innocent life???  Who does that??  I know moms who are super cool and who can do these kinds of things.  They always have some cool activity planned or some great learning experience lined up.  Not me.  I really just want to go about potty training, and laundry and desperately trying to get in enough fruit and veggie servings every day.  I can’t raise caterpillars to be butterflies!! 

Except somehow, by the grace of God, I think I did! :)