Friday, February 26, 2016

Somewhere on the Spectrum. Written by Krystina Steinhauser

Somewhere on the Spectrum

October 2005, my husband and I were excited to find out we were expecting what we thought would be our second child.  To our surprise at our first ultrasound, there was not one but two babies!  The technician kept going to one side of my stomach where I saw a baby then to the other side of my stomach where I saw a baby.  I looked at her and said “Is that two babies??” to which she replied, “Oh, you didn’t know?  Yes, there are two babies!  Congratulations!”  I thought I was going to pass out.  My husband was in the waiting room with our then 4 year old daughter.  I said, “can you please go get my husband?”  After they brought them into the room, my husband said is everything okay?  The technician showed him the two babies and said “It’s twins!”  My husband and I looked at each other with a look of panic and fear while my daughter starting yelling “Two babies!  Two babies!”  After a few days, the shock wore off and we accepted that this was going to happen.  We later learned it was a boy and a girl.  It was perfect.

The rest of the pregnancy was normal.  Baby A was our little girl, Vanessa and Baby B was our little boy, Dylan.  Vanessa was always the dominant one.  She was never hiding in ultrasounds and was always moving around.  Dylan was always being covered by Vanessa and was always harder to find in ultra sounds.   Vanessa was always the more dominant baby in the womb.  This did not change when my doctor finally decided 37 weeks was long enough and decided to induce me.   With just three little pushes Vanessa came into the world at 12:45am.  After his dominating sister finally left, Dylan decided to sprawl out.  After 30 minutes of doctors trying to get him to turn and him continually refusing to do so, they decided to perform an emergency c-section.  At 1:14am almost 30 minutes later, Dylan entered the world.

Life with twins was not as horrible and unmanageable as I thought it would be.  It was definitely an adjustment but both babies were healthy and flourishing.  Dylan was always a fussier baby.  He spit up a lot but otherwise was hitting all of his milestones with crawling and walking.  At around 1 we started to notice a difference.  Vanessa began babbling and noticing people.  When someone came to visit, Vanessa would walk over to them while Dylan would just sit, staring at the tv or a toy.  He kinda seemed to be in his own world.  After voicing my concern to my pediatrician, she would tell me I can’t compare them, they are two different children and boys and girls develop differently.  But deep down I knew something didn’t seem right.  One day, my mom was over for a visit.  Vanessa walked right over to her while Dylan sat there just staring at the tv.  My mom kept calling his name to which he didn’t respond.  She went up behind him with a pot and spoon and started banging it, once again, no response.  We started to think it was his hearing.  So we took him to get his hearing tested.  To our surprise, the results came back normal.  Again I voiced my concerns to my pediatrician who finally agreed to get Dylan early intervention services.

Dylan was 18 months old when he started receiving early intervention.  Our therapist, Schelley was amazing.  She would work with Dylan trying to get Dylan to say some words.  At this point Vanessa’s vocabulary was starting to take off and she became the “voice” of the twins.  When she wanted juice she said juice and when I would get juice for her, I naturally got it for Dylan as well.  We decided to stop just giving things to Dylan because Vanessa had asked for them.  If Vanessa asked for juice she got it but Dylan didn’t.  He would see Vanessa with her juice and would get so angry and frustrated that he didn’t have juice that he began to throw things and knocked things over in a bit of a rage.  We thought this would force him to use his words and ask for something he wanted but it didn’t.  We continually worked on his vocabulary.  I clearly remember a barnyard puzzle he had.  He loved doing the puzzle and every time he picked up a piece we would say “cow, moo or duck, quack.”    Finally one day at around age 2, Dylan was sitting doing his puzzle and we heard “cow, moo, duck, quack.”  I sat and cried, finally our work was paying off.

After that, Dylan’s words started coming out, slowly but surely.  The A-word had crossed my mind and as most of us moms do, I had done hours and hours of research about it and the signs Autism but besides the lack of speech and eye contact, Dylan didn’t have any other characteristics of Autism.  He didn’t flap his arms or rock back and forth, noise didn’t bother him, etc.  Deep in my heart I knew something wasn’t right but I wasn’t sure what.  I prayed and prayed for it not to be Autism.  Maybe he was just delayed and to this point that was his “label”  developmental delay.  On the twins 3rd birthday, we took them to Sesame Place.  Dylan was happy and enjoying the park until we got to the merry go round.  The music was very loud and he stood there holding his ears and rocking…at that moment I knew.

Shortly after that, we took Dylan to be tested by the Developmental Pediatrician.  The first time he was tested, his results came back as typical developing.  I was mixed with emotions, relieved it wasn’t Autism but upset because without a diagnosis, services were limited and I knew he needed some type of help.  The doctor recommended having him re-tested.  So after 9 months we had him tested again, this time he fell into the “PDD-NOS” category.  Finally, a diagnosis.  I was relieved and sad at the same time.

After getting the diagnosis, we didn’t want to take him anywhere over fear of a meltdown.  It started to affect our family.  The girls would want to do things and we would either not do them or I would take them while my husband stayed home with Dylan.  I realized that we could not live this way, Dylan was tolerant to change and we were very quick to pick up on things that bothered him.  Our family is a HUGE Disney family.  We had taken the kids when the twins were 22 months old.  Dylan was fine on that trip.  Nothing to even tip us off to his Autism.  We wanted to go back to Walt Disney World.  At first I remember thinking that there was no way Dylan could tolerate it.  He was now 4 and things like noise, waiting in long lines and crowds would be too much for him to handle.  Those things are hard enough for a TD child to handle let alone an Autistic child.  At first we said no.  The girls were crushed, I was crushed.  Disney was our happy place and the thought of never going back killed me.  I spent months researching about Autism at Walt Disney World.  After reading all of the accommodations Disney makes for families with an Autistic child, I decided we had to try.  I booked the trip and thought this is either going to be the best trip ever or the worst trip ever.  The first day at the hotel was great.  The kids played at the pool and loved the resort.  The next morning we got up to go to Magic Kingdom.  My favorite part of Magic Kingdom is the opening ceremonies.  I remember the train arrived, the characters got off and the music started playing and Dylan lost it.  He started screaming and crying.  I thought, that’s it, trip is over.  I said to my husband, we’re here, we have to at least go in, if it doesn’t get better we’ll leave.  We got through the gates and as soon as we started walking down Main Street, the Disney magic set in.  Dylan was in complete awe.  He wanted to see all of the characters and go on all the rides.  He was just your average kid enjoying every moment at Walt Disney World.  During my research, I learned about (the then) Guest Assistance Card.  Having this card allowed families that have a child with a disability pretty much go to the front of the line so they didn’t have to wait in the long lines.  The trip turned out to be completely magical.  Dylan was calling out characters names when he saw them.  He would run up to them look them right in the eye and say hi.  It was like someone sprinkled pixie dust on him!  He was being verbal, making eye contact and being outgoing!  When we returned from the trip I was so inspired.  I knew that if our family could survive a Disney vacation with an Autistic child, any family can.  I decided to become a Disney Travel agent.  I graduated from the Disney College of Knowledge and have now helped numerous families make their Disney dreams a reality.

Dylan has had many wonderful therapists through the years.  BSC’s, TSS’s, MT’s, Speech Therapists, Occupational Therapists, Etc.  There were times where he was seeing several therapists a week.  But all of that paid off.  Last year, Dylan was dismissed from all services because of the progress he’s made.

Vanessa and Dylan are now almost 10.  Dylan is in 4th grade and mainstreamed in a regular classroom which he has been since Kindergarten.  He is doing incredibly well.  When it comes to his schooling, I’ve had to fight and advocate for a lot of things.  One of the hardest things I’ve had to learn is that you need to fight and be their voice.  His school has been wonderful and accommodating to him and because of that he is flourishing.

I am amazed at how far Dylan has come.  His vocabulary is the same as his sister.  As a matter of fact some days I think back and laugh when I thought he would never talk.  Now there are times when he’ll talk for 10 minutes straight!  He is such a sweet, loving boy and I wouldn’t change a thing about him.  I think my oldest daughter nailed it when one day she said to me, “Mom, I don’t want a cure for Autism because I love Dylan just the way he is!”


Krystina and her family.

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