We didn't have health insurance and since I wasn't working, money was nearly non existent.
Several months passed and I was finally able to get to a Dr. I was diagnosed with anorexia, depression, anxiety and colitis.
I was prescribed antidepressants (that saved my life) and went to therapy.
It was then I realized how uneducated people were about mental health issues. My friends didn't understand why I couldn't leave the house. They didn't understand why I didn't just "get over it". I was unable. I was paralyzed with anxiety and depression.
I slowly began to heal and vowed to be the poster child for "healing from depression".
Fast forward to a year later. We were expecting our first child. I was elated. The only thing I ever wanted in life was to be a mommy! We were blessed with a perfect little angel. Four years later, we were blessed yet again with another perfect angel. We had our two little girls and all was right with the world. When our second daughter was just five months old, we got a BIG surprise. I was pregnant ....AGAIN....
The pregnancy was rough. I started having contractions when I was 18 weeks along. When I was 24 weeks, my water broke spontaneously.
I stayed in the hospital for 10 days but Bo couldn't wait any longer. He was delivered on Feb 23rd, 2000.
He weighed 1 pound 14 ozs and was 13 inches long. He was a fighter. The night he was born, we had him baptized and given his last rites. The Dr. told us "We're working on him". It was the scariest night of our lives.He spent 3 and a half long months in the NICU. Those three months consisted of us getting several phone calls that went something like this..."We need you to get down here right away....Bo may not make it through the night".
Bo was stricken with a preemie disease called Necrotizing Enterocolitis three time. Most preemies that get this disease ONCE, do not make it. He was truly a miracle.
When Bo was finally taken off of his respirator and able to breathe on his own, we were hit with the news that he had Retinopathy of Prematurity. He had an advanced stage in both eyes. They couldn't guarantee that he would have any sight. At this point, it looked like he would lose all vision in both eyes.
They performed laser surgery on both eyes. It was still too soon to tell the extent of the damage.
Meanwhile, he was still not feeding well. He had terrible reflux but my mommy instinct told me there was something more going on.
He was released from the hospital on June 13th! We took him home thinking the worst was behind us. Boy, were we in for a surprise...
Bo had a follow up eye appt. one week after coming home. We were told his retina in his left eye was detaching and the only hope for saving his sight was a specialist up at UCLA who was one of two Dr's in the US that performed this particular surgery called a Virtrectomy.
We were up at UCLA the next day prepping Bo for yet another surgery. He came through better than expected. His Dr. told us his surgery was "newsworthy". He still couldn't guarantee the sight that Bo would have but was optimistic.
We went home and began life with a special needs baby, a 15 month old toddler and a four year old preschooler.
The whole first year was a bit of a blur. Bo had physical and occupational therapy. He was developmentally delayed and we spent more time at the Dr's office than at home.
Bo had a rough time feeding from the beginning but since he had been home, it had gotten worse. He was gaining weight but he was also projectile vomiting after every feed. We had seen several GI dr's who assured us he did not have a narrowing from his earlier battle with NEC. I was not convinced. We were at the ER nearly once a month for the first year with Bo vomiting bile. I insisted something was wrong and finally found a GI dr. who believed me. He sent us to a specialist at CHOC hospital who, after taking one look at a recent upper GI, admitted Bo into the hospital for a small bowel resection. Bo did have a narrowing in his small intestine that was hard to see on the film. The surgeon spotted it right away and wouldn't let us leave. He said Bo's intestine could have "burst".
Bo went through a very long and painful surgery to repair his intestine. He was sent home 9 days later and recovered quickly!
Every day of Bo's life has been a blessing and a challenge for him and us. He is burdened with the fact that he has poor eyesight. He is legally blind. He has cortical visual impairment which is basically a "short" from his brain to his optic nerve. There are days when he sees better than others. He also has Sensory Processing Disorder. He has a difficult time being in crowds or filtering noise/lights/etc. He also suffers some residual effects of his bowel resection. His tummy is sensitive and has been hospitalized a few times with stomach viruses and suspected twisted intestines. He is in school and is learning braille (in case he needs it in the future). Bo has a 10x's greater chance than an average sighted person to suffer a detached retina. He cannot enjoy jerky rides and has to be careful not to get hit in the head with a ball at school. He has had a few bleeds in his eyes in the last year that have sent us running back to UCLA to make sure he's not losing his retina.
He doesn't complain. He is a loving little guy who always sees the bright side!
Now onto Boo!
We were blessed with a very memorable call from a social worker on Jan 31st, 2004. We had been foster parents for nearly a year and already had 12 little ones come and go. My heart was aching for a baby that I knew was coming....I just didnt know when. This was our night. The social worker said "I have two babies....a girl and a boy...both newborns...which one do you want?" I said...."The boy is our son...when can I bring him home?" I drove down to the hospital the next afternoon to pick up Boo. He was the most beautiful baby in the NICU. He was perfect. He was ours!I brought him home and our friends came by to bring us various things we needed for him. We were used to getting babies by this point....but this one was different. This one was my "Boo". I just knew he was our forever son.
The next year was uneventful. We didnt take any more foster children. We concentrated on the family we had. Boo had some early intervention but overall was doing well.
When he turned 15 months, we knew something was wrong. He began having EXTREME tantrums. He would bang his head on the ground. He would hit and throw anything and everything if things didnt go his way. The problem was, we didnt always know what "his way" was. He couldn't communicate when he was raging. He was in a whole different world. He started to show some signs of sensory integration disorder and self regulatory disorder. The month before we finalized his adoption, our suspicions were confirmed. He was given the SPD dx. The problem was it was getting worse each day.
Boo was impulsive. He would run out of our house and down the street for no reason. He would run and laugh. He would bolt in parking lots with no regards to traffic. When he was three, I had him evaluated by the school district. He was able to hold it together and was denied services. I told the psychologist who evaluated him that he can hold himself together for very short periods of times but then will lose it. Once he loses it, there is no coming back. He could tantrum for two hours straight. He would kick, scream, bite, throw things for hours on end. There was no comforting him. It killed me that he was so frustrated and angry. He began rocking to put himself to sleep (also called stimming). He still rocks to this day.
I took him to two neurologists. One said he had "pre-ADHD" based on his symptoms and also on his prenatal drug and alcohol exposure. The other Neuro, that we had waited 6 months to see, told me it was my parenting that was causing his behavior. By now, Boo was nearly 4. I was at my wits end. No one will help us. No one believes that he has a serious problem.
Once he hit four, his speech hit a lull. He began to have a harder time articulating his feelings. He became more withdrawn. He lined up his toys and began hyper-focusing on certain things or parts of toys. He started to lose interest in his favorite TV programs. He was unable to sit for any length of time. He became even more angry and started making perverse statements. He started having severe anxiety. He was afraid to go places because he was afraid he would melt down. He started having a hard time reading social cues. He doesnt understand tone of voice. He takes offense and is easily hurt or angered by a tone in a voice that he perceives as "mean".
Boo also has a hard time understanding "kidding" or abstract concepts.
We found a developmental ped down at UCI who specializes in children with severe behavioral challenges. We waited 4 months to see her. She started Boo on medication and told us he was "complicated". She referred us to a psychologist for a neuropsychological evaluation. We started an 8 session evaluation. During this time, we were encouraged to "hospitalize" Boo for some severe behaviors he was displaying. We decided against this.
He was then dx'd with ADHD, Mood Disorder-NOS, General Anxiety Disorder and possible PDD-nos.
We then had to find a psychiatrist to manage his meds because his developmental Ped was taking a leave.
We were nearing the end of our rope by this time. We still didnt feel like we had a good "grasp" on what was going on. Even with those dx's, I still had questions.
We stumbled upon an AWESOME psychiatrist up at UCLA who was one of the leading psychiatrists at the Childrens inpatient and outpatient clinic. He works closely with the Autistic Clinic and is one of the leading researchers in Autism up there.
He took one look at Boo and said he was definitely on the Autistic spectrum. He diagnosed him with ASD, GAD, severe ADHD and a rule out of bipolar and fetal alcohol effects. We are currently working with him to find the right medication combination for Boo.
I felt like I finally found someone who UNDERSTANDS Boo. I finally had some Ammo for the school district. I take my paper with Boo's dx back to the psychologist who evaluated him a year ago. She takes one look at Boo and tells me he is NOT autistic. I wanted to scream. How dare this person who has spent less than 5 minutes with my son tell me that Boo's psychiatrist (MD.), who is an Autism expert, was wrong and she was right? I was livid. The evaluation they did on Boo that day was scarring. They actually held him down for one part of it. He wasn't cooperating. He was on sensory overload and was in a big room full of toys. They wanted him to put a puzzle together and he wanted to look at the other toys in the room. They sat him down after I promised him they wouldnt touch him. Anyone knows that a child with SPD or ASD, has a hard time being touched with no warning!
I left that day with little hope. I had been waiting a year for Boo to get some intervention from the school district. I was praying he could be placed in the Autistic preschool. They didnt want to label him Developmentally Delayed....They wanted to label him Emotionally Disturbed. They told me he needs hardcore behavioral therapy. The problem is, behavioral therapy is not always appropriate for children like Boo. He needs more specialized care. He needs help on the underlying causes of his behavior. It is clear, I am not going to win this fight. Boo is currently in the preschool program the school district recommended. He is in an ED preschool. We are taking it one day at a time. Homeschooling may be in the not too distant future.......stay tuned......
