Monthly Archives: May 2016

On the right track

The staff at the clinic was extremely nice and helpful. We were told at the clinic that Guto should have been qualified for therapy based on the speech evaluation he had undergone in January and they couldn’t understand why he was denied the therapy recommendation. They checked with their superiors and found out we were able to qualified for speech therapy without needing a new evaluation, since our previous evaluation should have already qualified him. An addendum was all that needed to be done. They also told us about the early intervention (EI) program available through the government and they helped us get the process started, since it would take a few weeks to complete the requirements. We told them we wanted to start the therapy as soon as possible and that we were willing to pay out of the pocket until all the paperwork for the EI was ready. They told us that as soon as they had the addendum they would call and schedule to start his therapy.

A week later we got a letter on the mail saying we had an appointment at the clinic. It was not as soon as I would like, but at least we had a date scheduled for what I thought would be the beginning of his therapy. We got a call on the day of the appointment and were told they would have to reschedule due to the therapist assigned to Guto having been involved in an auto accident. We were told someone would call us back with a new appointment date, but two days went by and nobody called. We ended up calling the clinic ourselves only to find out that the appointment was only to set up an interview to see if we would qualify for the Early Intervention program. I asked about getting his therapy started and they said they needed a referral from his pediatrician in order to schedule such appointment. What??? Almost a month after the original interview and they still had not sent the request. I didn’t even know one was required. So much for the early intervention! I think I lost my mind that day and I just couldn’t stop crying. Why did it have to be so hard to get help. It was just a simple speech therapy, not a complex surgery. Why so much bureaucracy? Why did it have to take so long?

I remember it was a Thursday afternoon. I knew Guto’s pediatrician was at work then, but she would not be back to the clinic until the following Tuesday and I was pretty sure she would not get to sign the required form if they faxed it to her that day. I am so glad I have a wonderful husband that was not only worried about our son, but now was worried about me too. Instead of taking a chance, he had the clinic fax the form directly to him and he personally made sure the paper got signed that day by taking it to the pediatrician himself and then delivering the form in person to the clinic. Now we just had to wait for the call back from the clinic with the day we would start therapy. I made Joe call them everyday to ask about the appointment and it still took them a whole week to schedule his first therapy session. He was going to have two 30 minute sessions a week. I think he should have qualified for more, but it was all we had until the next evaluation when he turned 2.

To our surprise during the week we were waiting for the therapy to be scheduled
we got a call from the Dennis Developmental Center (DDC), which was highly recommended I had spoken to in regards to autism. I was feeling hopeful again because the waiting list was between 9 to 18 months and we got him in within 2 months. How lucky we were!!! I felt like someone up there was surely looking out for us.

Our appointment was scheduled for April 20th, which was one day after Guto started his speech therapy. However, the therapist just watched him for a while to figure out his needs, since she was not the one that evaluated him before so I don’t think that session really counted.

When we went to the appointment at the DDC we met with a social worker (Becca) and she was very sweet. She took all three of us to a small room and I was surprised to see that they didn’t have many toys to keep Guto busy or even to see how he would behave.

During the appointment we mentioned how blessed we felt to be able to get the appointment so early. She said we sent our application at the right time and it must have been meant to be. She also confirmed that the waiting list was actually closer to 18 months due to the number of people they had to assess and their limited time and number of professionals available to do the evaluations.

She sat across from us and Guto started to play with the few toys they had. He was not happy being there and tried to scape a couple of times. She didn’t interact with him that much because this interview was more about us. She asked a lot of questions about Guto’s behavior and medical history and she kept a watchful eye on him during our interview.

We found out that this was just a screening assessment. I guess due to the number of people they have looking for answers, they need this kind of screening to see who really qualified for the type of thorough assessment they provide. Fortunately we did qualify for it and were told she would call with the date for the next step, which was going to be an appointment with the neuropediatrician.

I remember feeling somehow relieved again. Now my baby was going to be seen by a doctor and he would be assessed by a multidisciplinary team specialized on autism.
I told Becca how worried I was since everything was taking such a long time I didn’t know if I was doing enough to help Guto, but I just didn’t know what else to do, everything was so new to me. And her words made me fell so good. She said. “You are great parents, you did everything you could have done. Don’t worry: You are on the right track!”

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After literally losing my mind and after all the frustration we experienced, I believed her words and I finally started to feel I really was on the right track and that somehow everything was going to be allright.

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Grief

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I was not aware of this, but I had already started my grieving process when I first faced the possibility of having a special needs child. Here is a little bit of what I am facing:

According to Wright (2011) here are the stages a person goes through after a loss:

Shock & Denial: A person may deny the reality or gravity of their loss at some level to avoid pain. Shock provides emotional protection from being overwhelmed all at once.

You may ask why I am talking about a loss since I did not lose a child. Well, I didn’t lose a child, but I lost most of the dreams I had for him. I had to bury the life I had imagined for him to try to start to build a new one. And that’s what I was grieving, the loss of the dreams I had for my child.

Pain & Guilt: Shock wears off and is replaced with suffering of torturing pain. It’s important to experience the pain fully and not somehow hide it, avoid it or run from it. You may have guilty feelings or remorse over things you did or didn’t do. Life feels chaotic and scary during this phase.

Oh the guilt, that is a good one. Deep down I knew I had not done anything to cause it, but I had to try to understand why it had happened to my baby. I had to have done something wrong otherwise why would this have happened? I was blaming myself for it. Why did I have to have a child through IVF, maybe that is what cause it. Why did I have to be a mom after 35, maybe that’s the reason. Why did I eat that sushi (which was cooked) when I was pregnant? Why did I vaccinate him? … and so many other things that would take forever to write here.

Anger and Bargaining: Frustration leads to anger. May result in trying to negotiate with one’s self (or a higher power) to attempt to change the loss that has occurred. You may rail against fate, questioning “Why me?” You may also try to bargain in vain with the powers that be for a way out of your despair (“I will never drink again if you just bring him back”)

I was angry, very angry, especially with God. Why would He do something like that to this innocent child? Why him? I just couldn’t understand. I really hope one day I can. We may not know the answers, but He has a reason for all of this, and I need to trust Him.

Depression, Reflection, & Loneliness: A long period of sad reflection overtakes a person and the magnitude of the loss sets in. During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things and focus on memories of the past. You may sense feelings of emptiness or despair.

I think I am still in this stage. It comes and goes even though I already reached the acceptance stage long ago. I think being away from my family doesn’t help much to pass this stage. Thankfully I do have wonderful people around me that help me get through it every time I see myself getting into this phase again. I am not going to name everyone because I am afraid I will forget someone.

The Upward Turn: Life becomes calmer, more organized as one starts to adjust to life with the loss that occurred. Your physical symptoms lessen, and your “depression” begins to lift slightly.

Once we got the evaluation done and figure out what needed to be done the burden I felt got a little lighter, I wasn’t as angry anymore.

Reconstruction & Working Through: As a person starts to become more functional, realistic solutions seem possible for life after the loss. You will start to work on reconstructing yourself and your life without the old reality.

I guess here would be when we start to make new dreams, and start to build the future with our new reality.

Acceptance & Hope: The last stage – a person learns to accept and deal with the reality of their situation. A person is more future-oriented and learns to cope. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.

Acceptance came early on, there is nothing we can do to change what life has brought us, so we have to accept it and from that day on we just have to learn how to deal with it. We are still learning, and we always will. Nothing is black and white with austism, so from now on we will take one day at a time and cherish every single improvement. As for the future…. we will build it as it comes, right now we will focus on the present!

“I do not want to foresee the future. I am concerned with taking care of the present. God has given me no control over the moment following.” Mahatma Gandhi

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First screening

The day finally came, the moment of truth. I always play with my husband saying “I am always right,” but this time I was hoping I wasn’t. The evaluation was done on a Monday morning and it took almost 3 hours. It was done in a big room, with some toys in the waiting area and a couple of smaller rooms to one side. Guto liked the ball pit they had and he played with a train set while we talked to the people that were waiting for us. He was going to be evaluated by an Occupational Therapist (OT) and by a Psychologist (PSY). We didn’t have a speech evaluation since we had done one not long before.

The OT told us to just let him play by himself while she observed. She gave me a questionnaire to fill out while she watched him. Later she took all of us to a smaller room where she again played with him. She asked some questions and gave him some things to do like put cheerios inside a cup, stack cubes, match things in a board, open a book and to our delight he did everything she asked of him.

During the PSY evaluation, in the same room we were before, he was given some things to play and look at, like a phone, a scarf to play peekaboo and an electric bunny, which he loved. The therapist would call him by his name, but he never answered. Then she made us call him as well, but he did not respond to us either. After observing him playing and the way he interacted during that time she asked us to wait outside while she talked to the other therapist to discuss their findings.

After what seemed to be a long time, but truly was not, they came out and talked to us. I can’t remember everything that they said, but some of things that made more of an impact I still remember and they are stuck in my head. “After watching him we believe he is in the autistic spectrum”, “he is very young so we are not going to choose a diagnosis yet”, “he has so many positives in his favor.” When we asked what made them conclude he was autistic they said the main reason was the fact he doesn’t answer when we called him by name. “Based on all the positive attributes we wondered if perhaps he had some other issuer, but there is nothing else that explained why he wouldn’t be answering when you called. So if it is not autism, then what is it?” I remember thinking so that was it! Just like that I felt my life had changed with the blink of an eye.

In a way I was relieved because at least now I was going to be able to get him the help that he needed, but on the other hand I was devastated. I had read so much about autism in the previous couple of weeks and nothing was very encouraging. When I self-diagnosed him I kept hoping I was wrong, but now I had experts telling me that more than likely I had been correct with my diagnosis.

I remember being calm when they told us what they were thinking and I remember asking them “Do you think he will be independent, will he be able to have a fairly normal life?” They told me they were very optimistic due to his positive traits, but I know they can’t guarantee anything, and that really is scary. I just needed someone telling me I didn’t need to worry, that everything would be okay, but how can you be certain? I remember them saying “you seem to be OK with that.” The truth is that I had been preparing myself for that moment for some time so I was calm and I probably looked okay from the outside, but I was not and I am still not. I wonder what they expected my reaction to be. Maybe if I had cried they would have been able to see that I was not okay inside, but they had no way of knowing I had been crying on a daily basis for over a month before that day. I had just accepted it.

Some of the other things that I asked included, “since he doesn’t have a definite diagnosis, does it make any difference as to what I need to do now? Will this delay treatment for him?” They assured me that it didn’t make any difference on what I should do from now on. Early intervention was definitely the most important task at hand. I needed to look for therapy providers and work on his weaknesses. The only time the lack of an autism diagnosis might interfere with his treatment would be when he is ready for school, in which case the system needs to know about his condition in order to get financial assistance if available. So a new evaluation will be done when he reaches the age of 4.

So we got a *r/o diagnosis of Autism, at least now we had something to work with. We could finally start seeking the help he needed.

*A rule out (r/o) diagnosis means that , in the eyes of the diagnostician (perhaps a psychologist or psychiatrist) the diagnosis in question is a distinct possibility, and warrants further exploration.

I saw the signs…

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“I saw the sign and it opened up my eyes, I saw the sign
Life is demanding without understanding
I saw the sign and it opened up my eyes, I saw the sign
No one’s gonna drag you up to get into the light where you    belong. But where do you belong?” (Ace of Base)

 

There are two steps for screening autism. First is the developmental screening, second a comprehensive diagnostic evaluation.

The first two years of a baby’s life are crucial for his/her growth and development. During this period you will take your baby to the pediatrician for check-ups, also known as well child visits. On those appointments, the doctor or a nurse will always measure baby’s length, weight and head circumference. The doctor will also make observations of your child’s behaviors, ask you about baby’s milestones typical to his/her age at the time and ask you if you have any concerns. Here is where the first step of a screening happens. Developmental screening is a short test to tell if children are learning basic skills when they should, or if they might have delays. During developmental screening the doctor might ask the parent some questions or talk and play with the child during an exam to see how she learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem. I didn’t know the questions our pediatrician was asking had anything to do with autism screening, I knew she was trying to make sure he was developing the way he was supposed to, but it never crossed my mind she was asking those question to make sure he was not in the spectrum. It was not until the 9 months appointment that she mention the questions she was to assess him for autism, and she also assured me he had passed every single one of them so far.

All children should be screened for developmental delays and disabilities during regular well-child doctor visit. According to the CDC, here are some signs that show some indication of a developmental delay and that should be mentioned to a doctor for further investigation. Most of them are red flags for autism. You should talk to your pediatrician if your baby:

At 6 months
·         Doesn’t try to get things that are within reach
·         Shows no affection for caregivers
·         Doesn’t respond to sounds around him
·         Has difficulty getting things to mouth
·         Doesn’t make vowel sounds (“ah”, “eh”, “oh”)
·         Doesn’t roll over in either direction
·         Doesn’t laugh or make squealing sounds
·         Seems very stiff, with tight muscles
·         Seems very floppy, like a rag doll

At 9 months
·         Doesn’t bear weight on legs with support
·         Doesn’t sit with help
·         Doesn’t babble (“mama”, “baba”, “dada”)
·         Doesn’t play any games involving back-and-forth play
·         Doesn’t respond to own name
·         Doesn’t seem to recognize familiar people
·         Doesn’t look where you point
·         Doesn’t transfer toys from one hand to the other

At 12 months
·         Doesn’t crawl
·         Can’t stand when supported
·         Doesn’t search for things that she sees you hide
·         Doesn’t say single words like “mama” or “dada” (Guto said mama and dada, but never meaning to call us)
·         Doesn’t learn gestures like waving or shaking head
·         Doesn’t point to things (Guto would not point with an index finger)

At 18 months
·         Doesn’t point to show things to others (Again, not pointing with an index finger)
·         Can’t walk
·         Doesn’t know what familiar things are for
·         Doesn’t copy others
·         Doesn’t gain new words
·         Doesn’t have at least 6 words
·         Doesn’t notice or mind when a caregiver leaves or returns 

At 24 months
·         Doesn’t use 2-word phrases (for example, “drink milk”)
·         Doesn’t know what to do with common things, like a brush, phone, fork, spoon
·         Doesn’t copy actions and words
·         Doesn’t follow simple instructions
·         Doesn’t walk steadily

*The signs Guto was showing are bold

IMPORTANT: You should talk to your doctor if at any time your child loses a skill he/she once had, no matter what age!

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A light in the end of the tunnel

Unsplash - tunnelWe love our pediatrician! When she saw us she apologize for what happened and told us to never let something like that happen again and to always ask to talk directly to her if we couldn’t get something we need. Specially things important like this. Then she asked what made us believe Guto was autistic since he always passed the screenings done on his milestones appointments. I started to cry and then began to tell her our concerns. She agreed they were real. Some of the reasons we gave her were not questions asked during the screenings in the office but were definitely red flags.

She asked if there was any place in particular that I wanted to get the assessment done. During my research I had found that the Denis Developmental Center (DDC) was the best place in town to have this kind of assessment done, but the waiting list was about 9-18 months. We didn’t have that much time so we decided to go with a different clinic in order to get some answers right away. We did get on DDC’s waiting list and just hoped our wait would not be as long as they said.

So we finally got our referral and in the middle of March we got an appointment scheduled. I could finally breathe a little easier and let my guard down for a while.

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The beginning of a long journey

Once I got the M-CHAT-R results, my first step was to contact the speech therapist that had evaluated Guto. She had been out of the office due to being sick so I had to keep trying for a couple of days. When I finally got in contact with her I explained that I wanted to start his therapy as soon as possible because I was afraid his delay was due to something more complex. I had not talked to his pediatrician nor had he received any kind of formal evaluation, so I didn’t say anything about the possibility of autism. To my surprise, the speech therapist told me that since I was concerned we should go ahead and start the therapy. However, in order to schedule the therapy he would have to get a new evaluation and she gave me a couple of places to call. WHAT???? Another evaluation? Why? All I could think of is that it would take a long time to set up yet another appointment, time we didn’t have…. I felt like we were starting all over again, but there was nothing I could do. I just needed to work with the system and pray it would not take too long to get him in for a new evaluation. We started making phone calls right away to get the ball rolling again.

The next step was to call his pediatrician and ask for a referral to screen him for autism. How hard could that be, right? Well, when I talked to the nurse at the clinic she told me that in order to get the referral we needed to set up an appointment for the doctor to see Guto first and then she could give us the referral. The next available appointment would be at the beginning of April and this was the end of February.  WHATTTTT??? Do this people have any idea about what it is like to go through something like this? I went ahead and set up the appointment, but I was not going to settle for that. I had to do something to help my baby!

I was a total wreck for the next couple of days. I just wanted someone to listen to me, care about my concerns, someone that could help my son to be evaluated and find out what I needed to do. Remember, in my head he was already diagnosed and all I needed now was to get the formal diagnosis in order to get the process going. Why was this so hard to understand? Does anyone care? What about early intervention? What good is it to know you need to start treatment as soon as possible if you cannot get the help you need?

After my days of initial despair and realizing that nothing was getting done, my husband and I ended up going to the pediatric clinic and demanded to talk to Guto’s pediatrician.  All we needed was a referral. We didn’t get to see her that day, but they were able to set up an appointment with her the next day! It was one small victory for us. Lesson to be learned – do not give up even on the smallest challenges!

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