Hi, We are the Jensens! Curtis and I have
been married for 12 years. He is a computer guy who likes to surf on the
side and I am a Mom (and quilter when I have a moment) to our 2 kids, Georgia
and Levi. They are twins…although they couldn’t be more different, opposite in
every way, these two kids keep our lives busy, busy, busy. They are 6
years old and I feel like we have already lived an entire life time in those 6
years with all that has happened! Both Georgia and Levi were diagnosed
with Autism at age 2, Celiac Disease at age 3, along with several food
allergies, and Levi was also diagnosed with severe epilepsy at age 2 and Leigh’s
Disease at age 3 ½ (a mitochondrial disease). What a roller coaster
things have been, but still an amazing ride. Somedays are tough, really
tough…others you just feel so grateful for the chance to have them in your
life. I love the moments when they giggle or are so silly they just make
you laugh. Levi has little to no language, which adds extra
challenges. Georgia has been a little miracle and has grown leaps and bounds and
is now mainstreamed in a normal classroom and doing very well. She is
recovered, although still managed with diet (for the Celiac Disease) and
occasional medications for things that pop up from time to time. You can read more about our family on our blog here.
been married for 12 years. He is a computer guy who likes to surf on the
side and I am a Mom (and quilter when I have a moment) to our 2 kids, Georgia
and Levi. They are twins…although they couldn’t be more different, opposite in
every way, these two kids keep our lives busy, busy, busy. They are 6
years old and I feel like we have already lived an entire life time in those 6
years with all that has happened! Both Georgia and Levi were diagnosed
with Autism at age 2, Celiac Disease at age 3, along with several food
allergies, and Levi was also diagnosed with severe epilepsy at age 2 and Leigh’s
Disease at age 3 ½ (a mitochondrial disease). What a roller coaster
things have been, but still an amazing ride. Somedays are tough, really
tough…others you just feel so grateful for the chance to have them in your
life. I love the moments when they giggle or are so silly they just make
you laugh. Levi has little to no language, which adds extra
challenges. Georgia has been a little miracle and has grown leaps and bounds and
is now mainstreamed in a normal classroom and doing very well. She is
recovered, although still managed with diet (for the Celiac Disease) and
occasional medications for things that pop up from time to time. You can read more about our family on our blog here.
***************
Miggy:
Can you take me back to the day your kids–twins no less!–were diagnosed?
Do you remember how you felt? Can you compare those first thoughts and
feelings with how you feel now?
Can you take me back to the day your kids–twins no less!–were diagnosed?
Do you remember how you felt? Can you compare those first thoughts and
feelings with how you feel now?
Alaina:
Oh Yes, It was a very surreal experience. Both kids were born
healthy, but unfortunately because they came a little early at 35 weeks–Georgia weighing 4 ¼ and Levi at 4 ½ pound–they did have to stay at the
hospital till they reached the 5lb mark and were able to eat on their own which
was about 2 weeks. Things went well the first few weeks. Then
the colic set in. They cried constantly for months…I remember at about 6
months…things got marginally better…at 12 months again, marginally better….but
crying was the norm. Georgia seemed to be doing okay at 6 months…though
still an unhappy baby, Levi however was behind on milestones. At 9 and 12
months, Georgia was still doing fine (starting to say Dada, getting happier, but
Levi continued to fall behind on milestones. We felt like something was
wrong, but the doctors were not concerned. Georgia started walking at 13
months. And that really increased her independence and improved her
mood, although from the start she was walking on her toes. Levi at 13
months, only just started to crawl. He couldn’t hold his head up till
about 9 month and really lacked muscle strength in general, was abnormally
flexible and suffered from horrible reflux. At 15 months however things
took a dramatic turn for the worse, not just for Levi, but for Georgia
also. I went to their appointment and begged the doctor for help. I
told her what we were seeing with Levi (appearing to be deaf, not responding to
loud noises…or over responding to the smallest noise, scooting up to the wall
and banging his head until we stopped him, indifferent to pain, didn’t want to
be held, horrible reflux, constant diaper rashes, bad diapers…the list went
on). Things were so bad with Levi that we didn’t realize at that point
that things were progressing with Georgia. The doctor was anything but
nice, said there was nothing wrong but reluctantly gave me the number to early
intervention. They came out the next month for Levi, and at 16 months was
scoring in the infant range on all their tests. Still no diagnosis
though. They started an infant program of speech, ot, pt and infant play for 5
hours a week. At the kids 18 month appointment Georgia was falling behind on
milestones, she lost her words, and replaced them with this screeching
sounds. She also didn’t seem to understand anything we said, was overly hyper,
pulling out her hair, and eating her crib (huge chunks out of the wood).
So again at 18 months, I called early intervention for Georgia, they came out,
and again she was scoring 6-12 months behind what she was supposed to be.
So they started her program. But again…no diagnosis at this point.
Oh Yes, It was a very surreal experience. Both kids were born
healthy, but unfortunately because they came a little early at 35 weeks–Georgia weighing 4 ¼ and Levi at 4 ½ pound–they did have to stay at the
hospital till they reached the 5lb mark and were able to eat on their own which
was about 2 weeks. Things went well the first few weeks. Then
the colic set in. They cried constantly for months…I remember at about 6
months…things got marginally better…at 12 months again, marginally better….but
crying was the norm. Georgia seemed to be doing okay at 6 months…though
still an unhappy baby, Levi however was behind on milestones. At 9 and 12
months, Georgia was still doing fine (starting to say Dada, getting happier, but
Levi continued to fall behind on milestones. We felt like something was
wrong, but the doctors were not concerned. Georgia started walking at 13
months. And that really increased her independence and improved her
mood, although from the start she was walking on her toes. Levi at 13
months, only just started to crawl. He couldn’t hold his head up till
about 9 month and really lacked muscle strength in general, was abnormally
flexible and suffered from horrible reflux. At 15 months however things
took a dramatic turn for the worse, not just for Levi, but for Georgia
also. I went to their appointment and begged the doctor for help. I
told her what we were seeing with Levi (appearing to be deaf, not responding to
loud noises…or over responding to the smallest noise, scooting up to the wall
and banging his head until we stopped him, indifferent to pain, didn’t want to
be held, horrible reflux, constant diaper rashes, bad diapers…the list went
on). Things were so bad with Levi that we didn’t realize at that point
that things were progressing with Georgia. The doctor was anything but
nice, said there was nothing wrong but reluctantly gave me the number to early
intervention. They came out the next month for Levi, and at 16 months was
scoring in the infant range on all their tests. Still no diagnosis
though. They started an infant program of speech, ot, pt and infant play for 5
hours a week. At the kids 18 month appointment Georgia was falling behind on
milestones, she lost her words, and replaced them with this screeching
sounds. She also didn’t seem to understand anything we said, was overly hyper,
pulling out her hair, and eating her crib (huge chunks out of the wood).
So again at 18 months, I called early intervention for Georgia, they came out,
and again she was scoring 6-12 months behind what she was supposed to be.
So they started her program. But again…no diagnosis at this point.
The moment happened at 22 months. I was at
church. I had Levi out in the hallway. He was still crawling at
that point. I saw my friends little 12 month old boy. I watched him
walk up to his dad, hold up his arms and say “Dada”. In that moment my
world came to a crashing halt. I literally felt like God had taken me by
the shoulders and was shaking me, saying “Look! There is something wrong and
you need to do something about it NOW! There is no time to waste!” I knew in
that moment they had Autism. Never had we experienced anything like that
simple interaction with Levi or Georgia. I took the kids home after
church, put them down for naps and turned on the T.V. to try to get this
horrible thought of Autism out of my head. The show that first came on
was “Mercury Rising” you know, the one about the Autistic
Boy. I thought…”OKAY, OKAY, I got it, I’m listening, what the
heck do I do now?!” Curtis and I talked, I jumped on the computer and
researched into the night, and did every moment of every day for the fist few
months. By the grace of God, we came across the GFCF diet that
night. We started 2 days later, and by Golly, we had 2 very different
kids. AMAZING is the only way I can describe the effect we saw.
Once unhappy, un-interactive, stimmy kids…became happy, giggly, smiley,
affectionate kids literally within 3 days.
church. I had Levi out in the hallway. He was still crawling at
that point. I saw my friends little 12 month old boy. I watched him
walk up to his dad, hold up his arms and say “Dada”. In that moment my
world came to a crashing halt. I literally felt like God had taken me by
the shoulders and was shaking me, saying “Look! There is something wrong and
you need to do something about it NOW! There is no time to waste!” I knew in
that moment they had Autism. Never had we experienced anything like that
simple interaction with Levi or Georgia. I took the kids home after
church, put them down for naps and turned on the T.V. to try to get this
horrible thought of Autism out of my head. The show that first came on
was “Mercury Rising” you know, the one about the Autistic
Boy. I thought…”OKAY, OKAY, I got it, I’m listening, what the
heck do I do now?!” Curtis and I talked, I jumped on the computer and
researched into the night, and did every moment of every day for the fist few
months. By the grace of God, we came across the GFCF diet that
night. We started 2 days later, and by Golly, we had 2 very different
kids. AMAZING is the only way I can describe the effect we saw.
Once unhappy, un-interactive, stimmy kids…became happy, giggly, smiley,
affectionate kids literally within 3 days.
We feel so blessed that we actually got their
diagnosis’ in reverse. Autism being the culmination effect of everything
going on internally, and so we were led down a biomedical path to treat
Autism. Rather than learning about the Mitochondrial Disease and being given no
hope, no treatment…and likely having a much grimmer outcome. Even the
Celiac Disease, which I had never heard of, would have likely gone undiagnosed
until the kids withered away. We found out about Levi’s Seizures at 24
months, it was shocking and not at the same time. It explained a lot about things
I had seen, that the doctors told me not to worry about…the seizures have been
our greatest battle and continues to be. They are not under control and
he has been given the label of intractable epilepsy (failing multiple
medications). And his current neurologist has given us their last ditch options
which were not good. And so we continue to work with other doctors who keep up on
the latest research and trials.
diagnosis’ in reverse. Autism being the culmination effect of everything
going on internally, and so we were led down a biomedical path to treat
Autism. Rather than learning about the Mitochondrial Disease and being given no
hope, no treatment…and likely having a much grimmer outcome. Even the
Celiac Disease, which I had never heard of, would have likely gone undiagnosed
until the kids withered away. We found out about Levi’s Seizures at 24
months, it was shocking and not at the same time. It explained a lot about things
I had seen, that the doctors told me not to worry about…the seizures have been
our greatest battle and continues to be. They are not under control and
he has been given the label of intractable epilepsy (failing multiple
medications). And his current neurologist has given us their last ditch options
which were not good. And so we continue to work with other doctors who keep up on
the latest research and trials.
Miggy:
Explain how Levi’s and Georgia’s specific special needs affect your day-to-day
life?
Alaina: Day to Day life with Georgia is fairly typical…just
be ready to have your ear talked off. She literally talks non-stop about every
subject, especially dragons and dinosaurs. She loves national geographic shows
and will tell everyone about what she learned.
For Levi, we still have to care for most all of his needs. Like
you would an 18month-2 year old. He needs help with eating, dressing, bathing,
brushing hair and teeth, putting on shoes, sometimes he still needs help
getting in and out of the car. He loves to play outside, but tires
quickly, so we keep a stroller for long excursions. Over stressing his
body and muscles means more seizures.
you would an 18month-2 year old. He needs help with eating, dressing, bathing,
brushing hair and teeth, putting on shoes, sometimes he still needs help
getting in and out of the car. He loves to play outside, but tires
quickly, so we keep a stroller for long excursions. Over stressing his
body and muscles means more seizures.
Levi’s last EEG in January showed over 1000 partial
and complex partial seizures a day, and 1 Grand mal Seizure during the
night. It is amazing that he is still able to function, but he is a
ROCKSTAR. Over the years the goal has changed from trying to recover him
(which we may or may not be able to do in this life) to making sure that he is happy and having fun. Part of the way we help him be happy, is by making
sure that he feels good and that he is healthy. So we still continue to try new
innovative treatments to move him in that direction. Some work, some
don’t, but we just keep moving along. The seizures unfortunately continue
to get worse, despite our efforts. Prognosis for Leigh’s Disease is poor
and uncertain, so we try not to worry about that, while continuing to look for
new ideas, but also realize, that despite our best efforts, we may not be able
to gain control of the seizures.
and complex partial seizures a day, and 1 Grand mal Seizure during the
night. It is amazing that he is still able to function, but he is a
ROCKSTAR. Over the years the goal has changed from trying to recover him
(which we may or may not be able to do in this life) to making sure that he is happy and having fun. Part of the way we help him be happy, is by making
sure that he feels good and that he is healthy. So we still continue to try new
innovative treatments to move him in that direction. Some work, some
don’t, but we just keep moving along. The seizures unfortunately continue
to get worse, despite our efforts. Prognosis for Leigh’s Disease is poor
and uncertain, so we try not to worry about that, while continuing to look for
new ideas, but also realize, that despite our best efforts, we may not be able
to gain control of the seizures.
Miggy:
What are the biggest worries you face for your kids?
Alaina:
I don’t worry about Georgia, she is quite a spirited child and always
calls it like it is.
I don’t worry about Georgia, she is quite a spirited child and always
calls it like it is.
For Levi, I worry that people will only see the
lack of language and Autism and just assume that there isn’t much to him, that
there is no potential for growth. Levi has shown us and continues to show
us that he understands…that all the information is getting in. His
spirit is not broken, just his body. He can still learn, he may not
be able to get that information back out easily, but it is there. And it really
bothers me when people, doctors and others who interact with him, constantly
under-estimate his potential to learn and assume that he just doesn’t
understand.
lack of language and Autism and just assume that there isn’t much to him, that
there is no potential for growth. Levi has shown us and continues to show
us that he understands…that all the information is getting in. His
spirit is not broken, just his body. He can still learn, he may not
be able to get that information back out easily, but it is there. And it really
bothers me when people, doctors and others who interact with him, constantly
under-estimate his potential to learn and assume that he just doesn’t
understand.
Miggy:
Now for a lighter question, have you ever had any funny
conversations/moments you never imagined due to your special needs situations?
Alaina:
Just recently, Georgia, who we’ve been trying to explain what seizures
are and what they do, told someone that, “Levi just doesn’t have a brain…that’s
why he can’t talk.” Oops! He isn’t the scarecrow from the Wizard of
OZ! We had tried to explain that the seizures stop his brain from
working, and make it hard for him to talk…but you know how little kids
sometimes mix things up. 🙂
Just recently, Georgia, who we’ve been trying to explain what seizures
are and what they do, told someone that, “Levi just doesn’t have a brain…that’s
why he can’t talk.” Oops! He isn’t the scarecrow from the Wizard of
OZ! We had tried to explain that the seizures stop his brain from
working, and make it hard for him to talk…but you know how little kids
sometimes mix things up. 🙂
Miggy:
How can people best approach or respond to Levi? Is there something you
wish other people knew so as to avoid awkward or hurtful situations?
Alaina:
Levi loves to interact with people, he is silly, giggly and sweet.
The best thing is to just talk to him like he is just another kid on the
block. He may not answer out loud, and that is okay. 🙂 And I hope that others can be okay with that
too. I love when people aren’t afraid to ask questions. I
have found that kids are actually the best at this. On the playground
kids ask me all the time, why he isn’t talking or why is he making a funny
noise…just another lesson we can learn from our kids. I often will just start talking about him and you
can literally feel the person’s anxiety melt away as they start to understand
why he not responding to them in a normal way.
Levi loves to interact with people, he is silly, giggly and sweet.
The best thing is to just talk to him like he is just another kid on the
block. He may not answer out loud, and that is okay. 🙂 And I hope that others can be okay with that
too. I love when people aren’t afraid to ask questions. I
have found that kids are actually the best at this. On the playground
kids ask me all the time, why he isn’t talking or why is he making a funny
noise…just another lesson we can learn from our kids. I often will just start talking about him and you
can literally feel the person’s anxiety melt away as they start to understand
why he not responding to them in a normal way.
Miggy:
What is the biggest lesson you’ve learned since becoming a special needs
mom?
What is the biggest lesson you’ve learned since becoming a special needs
mom?
Alaina:
What lesson haven’t I learned! I’d like to think that I’ve always
been a fairly patient, nice, non-judgmental person, but life with a special
needs child has taken those things to the limit. As well as just being
completely understanding of others. I’m not as shy. I have “grown a
backbone” so to speak. I stand up to the doctors when something doesn’t
feel right, seem right. I learned the hard way that they don’t always
have the right answer and that is okay because they are human just like us. But
as a mom, I know my kid best and if I have that feeling that something isn’t
right then I make sure they listen to me now and don’t just tell me
“everything is fine”.
What lesson haven’t I learned! I’d like to think that I’ve always
been a fairly patient, nice, non-judgmental person, but life with a special
needs child has taken those things to the limit. As well as just being
completely understanding of others. I’m not as shy. I have “grown a
backbone” so to speak. I stand up to the doctors when something doesn’t
feel right, seem right. I learned the hard way that they don’t always
have the right answer and that is okay because they are human just like us. But
as a mom, I know my kid best and if I have that feeling that something isn’t
right then I make sure they listen to me now and don’t just tell me
“everything is fine”.
Miggy:
If you could say something to the mom who just starting on this journey
of special needs, what would you say? What would you say to
yourself if you could go back in time?
If you could say something to the mom who just starting on this journey
of special needs, what would you say? What would you say to
yourself if you could go back in time?
Alaina:
Another lesson I’ve learned is to morn with those that morn and comfort
those that stand in need of comfort. To a mom just starting out I always
let them know, how sorry I am and just let them talk about things.
Truly, there really isn’t much that can be said that can “make it all better.” I want them to know there is HOPE. Hope for a
brighter, better future. Things WILL get better, usually with hard work, but it’s
always worth it.
Another lesson I’ve learned is to morn with those that morn and comfort
those that stand in need of comfort. To a mom just starting out I always
let them know, how sorry I am and just let them talk about things.
Truly, there really isn’t much that can be said that can “make it all better.” I want them to know there is HOPE. Hope for a
brighter, better future. Things WILL get better, usually with hard work, but it’s
always worth it.
***************
Do you ever feel tempted to bow down at the feet of these mothers and worship them? I’m in awe of Alaina and want to thank her for sharing her story and her two remarkable children with us. Between the lines of what she actually wrote I feel like we could all learn a lesson in patience and perseverance. I also really like what she said about hope for a brighter, better future. Things usually do get better. And of course, speaking up to Dr’s when your mom gut is telling you somethings not right–you know I’m a big advocate for our motherly instincts! Thanks again Alaina.
As always if you or anyone you know would like to be included in the special needs spotlight please email me at thislittlemiggy at gmail dot com.
Have a fantastic weekend!
As always, I am in awe. Thank you for sharing your story and introducing us to your wonderful kids. Much respect for you all.
What beautiful kids. I love learning about these wonderful families!
I love Alaina. She is bright, articulate and just an amazing mother. Through this spotlight, she and and I have found one another and I have always appreciated her profound insight on diets and treatments for our little ones. She is a remarkable human being and mother.
Thanks for sharing Georgia and Levi's story.
-Kym Frey (Lily's mom)
Mydelayedfairytale.com
What an amazing story (I am so happy they are doing better now!). It is good to hear that the celiac diet actually helps ppl and is not just a Hollywood fad.