Last Day of 5th Grade

Tomorrow, Leah will walk the hall one last time as a 5th grader! It will be a huge adjustment for Leah as she has been attending the same school for the past 8 years. Each year, we had something to celebrate, but also endured heartache, we advocated for inclusion, services and for equality.

It’s hard having a child who’s been defined by their disability, it’s an invisible label that follows them wherever they go. Still to this day, there are certain events that I find myself lost in thought thinking to myself why... why did we have to advocate for the desk, or the having that fleeting feeling when I found out that Leah was bullied and nobody around her stood up to stop it. The feeling being secluded when Leah and I went on a field trip as we walked around the zoo by ourselves because we were not paired with other groups. Going through that experience I realized that there needs to be more opportunities for people to become more welcoming and accepting towards others whom are different! That is what makes life so special and so unique!

Through our troubles I want to give praise to the remarkable resource room teachers that Leah has had! We have been fortunate for them as they have taken Leah and held her to high expectations, they have been nothing but kind and most importantly they have had the patience and understanding to deal with us as parents. We ask questions, a lot to be honest, we are communicators as we are always trying to support Leah’s team as much as possible and as parents, we hold ourselves accountable.

These past three months have been something that I will cherish for the rest of my life, Leah has been surrounded by so many positive people, she had encouraging interactions with her peers. Last Friday, Alex and I got to experience Leah’s 5th grade graduation parade. Our Leah has grown to be such a smart, remarkable, and at times a goofy young lady. As parents Leah inspires us, she has shown perseverance and she has and will always be our blessing! Tomorrow will most definitely be bittersweet as we are looking forward to Leah’s future, as a middle schooler!

As everyone celebrates this year is FINALLY over, we want to congratulate all the seniors and give positive vibes to those who are transitioning to into middle and high school!

Apraxia

On our Facebook page I have posted about Leah’s Apraxia, but on May 14th, it was Apraxia Awareness Day! So, like many families who have a loved ones with apraxia I wanted to share some awareness and understanding on what apraxia is.

Childhood apraxia of speech (CAS) is a motor speech disorder that makes it difficult for children to speak. Children with the diagnosis of apraxia of speech generally have a good understanding of language and know what they want to say. However, they have difficulty learning or carrying out the complex sequenced movements that are necessary for intelligible speech.

Leah has been in speech therapy for years, this past year we have increased her time with her private speech therapist she is now going 3 times a week. They work on strengthening her jaw, she’s learning how to properly place her tongue on the roof of her mouth, and they are most recently they have been working on her L sounds. For years Leah would call herself Eah, because it was difficult for her to say Leah.

Something that I want everyone to know about my daughter, is that although she has a hard time communicating, her words often does not come out clear, and she has a hard time in social situations. I would like everyone to know that even though the odds have been stacked up against her, she has never given up, she is truly my inspiration. We are always encouraging her, giving her praise and we celebrate when she does not give up!

Let’s just imagine if we went a day without our voices and we had a difficult time communicating would you find yourself wanting to give up? Would you be frustrated? Misunderstood?

So, with that in perspective, if you meet a child who needs a little extra support, some prompting, or just the beginning sound of a word... just know they are aware of their surroundings; they are listening to everything that you have to say. Let us not treat people like they are any less than a person because they have a difficult time communicating.

Today is a good reminder that we need awareness, acceptance and understanding because you never realize that something like speaking comes to us so naturally, it may not be the case for those who have apraxia.

There is so much more that we all need to learn about apraxia, as I am constantly learning about it and how I can properly support my daughter.

Leah's First Prom

Some experience Prom when they are older, but Leah was invited to go to MPHS Life Skills Program’s Prom in 2016. We found her nicest dress that she had at that time as it was her Sofia the First dress, and we took her to the store so she could pick out flowers that she could hand out to some of her friends.

Although we did not stay long, but this evening was pretty spectacular!

This was the first time I have ever experienced the sense of belonging. It is a feeling that is so hard to describe, but as a parent you want your child to have a sense belonging, where they are not judged or treated differently based on their disability. You want acceptance and understanding where your child can just be who they are and not have to live up to society standards.

For the longest time I have wanted Leah to belong, and to this day I still want that for my daughter. But during this time of her life, I really wanted and needed to know that it actually existed. I hated the fact my daughter had to check certain boxes or have certain skills or behave a certain way for her to be included with her same age peers.

On this day of her 1st prom, she did not need to have mastered those certain criteria boxes as she was accepted for who she was. She was surrounded by peers that were much older than her, but they accepted Leah for who she was, and they treated her with the respect and dignity that one deserves. She was around her community, her forever friends and the families that I look up to.

I saw how the parents of these families interact with each other, they all smiled, knew each other, and I quietly observed how happy they were. They were not worried about being judged, they did not worry about saying the wrong thing, they were just genuine and authentic.

During this time, my daughter went to school and at that time she was in a developmental learning program. Parent’s whom had students in this program would pick their students up at the back of the school away from parents of their same age peers. There was only a few of us, we all kept to ourselves, sometimes we would have small conversations, but we just mainly stood and waited quietly. So, the feeling of being alone, isolated and being different was something that weighed heavily on myself.

Ultimately, Leah’s 1st Prom was an experience that filled my heart with hope, it gave me motivation, it inspired me. It made me want to recreate this experience for other families to have, but mainly I wanted other parents such as myself know that there is a community out there that supports their loved ones and accepts them for who they are. And in no matter what circumstance that there would be no judgment, no biases and to let them know that they are never alone. This was one of our dreams as the process of starting Leah’s Dream Foundation was to build on creating a stronger community for families to feel welcomed!

The Importance of Consistency

I simply love this picture of Leah, obviously she was not to excited when I took this picture of her that morning. It was in the summer of 2016 and her schedule was busy, we doubled up on everything during the summer months. Speech twice a week and extended her hours of behavioral therapy so this girl had no days off. She would sit at this table that we had in our living room for years waiting for her therapist to come to our house to start her therapy session. She often was exhausted from not sleeping the night before, but she knew that for the next four hours while she had therapy that there were not going to be any excuses and that she would have to meet the expectations of her therapists.

I have always mentioned the first two years of behavioral therapy were the hardest but as time went by Leah rose to the expectations, she eventually realized that the fight was not worth it. But every once in a while she would dig her feet down and not want to do what was requested of her. But here is the hard part that we have learned through Leah’s behavioral therapy, even when your child does not want to do something and yes, it is easy to give up and say it is not worth the battle (I have done this quite a bit and I would later regret it) but it makes it so much harder in the future. Because eventually it becomes a learned behavior. Even when your exhausted, you have had a long day at work, it is easy to go the simple route but then you must expect push back from your child when you want them to do something. So therefore, it is good to be consistent.

Leah is a kid that will try to get out of things especially work, she is the kid that will act that she is incapable of doing things, if she sees that someone will do something for her, she then she will use that to her advantage. For years she was prompt dependent, and she is also known for not wanting people to see her true potential.

As parents, Alex and I find ourselves constantly having to be blunt with each other reminding each other (nicely) that we need to stop doing things for her... Leah is capable of doing things herself. I think like all parents we never want to see our children struggle but sometimes if we take a step back and just watch you may be surprised of the outcome.

Sleep Training

One of the early struggles we had to overcome is sleep training. Leah was around 2 1/2 at the time and it was one of our goals as parents that we had set with Leah’s behavioral therapist on what we wanted to accomplish before Leah started preschool when she turned 3. When Leah’s was younger, she would fall asleep in our bed and then I would quietly move her to her crib. Leah started to become dependent on that and therefore would never fall asleep by herself and especially not in her crib.

We asked Leah’s therapist how can we do this successfully and she gave us a solid proof plan on just putting Leah into her crib in our room shutting the door, and no matter how hard Leah started to cry and if she got out of her crib we were instructed to not make eye contact with her and or any say anything but just to place her back into the crib and close the door. We were told that it could happen multiple times, but we had to hold strong and to keep doing this.

So we set a date, and I can tell you that we failed miserably on the first night that Leah ended up in a hamper and I went into the room after 4 minutes and grabbed Leah! So, Alex emailed Leah’s therapist and told her that yes indeed we failed miserably, and this was harder than what we expected.

Her response to us was a supportive, she told us that that we can do this, but the more times we try to leave her in her crib and then take her out the moment she gets upset, the harder it will be for her. She told us to stop for the time being until she was able to come and support us. So, we waited for a  month came up with a plan on eliminating naps, and once we started this process there was no going back so the first 3 nights Leah’s therapist drove over in the evening hours to support us and help provide us with input on how to carry out our plan. By the 3rd night we finally were successful at putting Leah to bed, but our instructions were if she were to wake up at night, we were to just ignore her so she can learn how to put her back to sleep herself.

Our next step was getting Leah into her own room into a toddler bed, so yes, we had the same amount of coaching and set a date, when Leah’s officially moved out of our room and into hers within a month of us getting her adapted to sleep training. Leah did not nearly have the same reaction as she did when she was in our room. Leah knew once she was in her bed she did not get up. So in the mornings she would sit in her room until one of us walked into her room then to tell her she could get up.

But all good things eventually come to a end right!! Now Leah wants to be more independent, and she will wake up throughout the early mornings and I will have to walk her back into her room multiple times. I figured that most families could relate to this memory I had! Sleep training is difficult my advice is to start early and make sure you have the proper supports put in place!

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PECS (Picture Exchange Communication Systems)

I hold this picture dear to my heart, it’s of a beautiful picture of Leah actually looking at the camera and smiling. But this very picture was used in her PECS book for years as her “I want card.”

Leah’s evolution of speech has been a slow, inconsistent process that started out with simple eye contact, then moved to sign language, transitioned to her using PECS (Picture Exchange Communication System), to one-word utterances and then to a few words with prompts. To this day I cannot have a simple conversation like most have with their children. But there was a time in her life where I was also told that Leah may never speak and as a mother, I could never come to terms with that.

In the beginning we used basic signs to help teach Leah on how to communicate with us, such as help, please, thank you, open, book, eat and drink; are just a few that we used frequently. Although it has been years since we used sign language, to this day I often find myself using these signs to help prompt Leah to say thank you or please.

The reason I am sharing this picture is as Leah was progressing through the stages of PECS I was asked by her speech therapist if we wanted to start transitioning to using a electronic device, I told her that I would have to think about it, but at that moment it was a time where my heart broke into a million little pieces. I knew Leah would not eventually need her PECS book and that she would be able to verbally communicate. But during this time, it was a used as a means of communicating with my daughter. When we transitioned to using PECS I spent endless hours taking pictures of preferred objects cutting them down to different sizes to laminate them and to put Velcro on the back of them.

Leah had multiple PECS books that she used, I had one that I always had with me it was small and portable, she also had one that she brought to and from school and then one that we kept at home.

One would say I was almost as stubborn as my daughter, because I was always asked if I could update this small picture of Leah because this was of a younger version of Leah. But to me updating the picture of Leah would mean defeat, I know it is not the way a parent should think but to me I knew that she had it in her that she was going to use words and not have to use pictures to communicate.

The faith and belief I have for my young daughter has and will always be so strong, I have always known that the possibilities are endless with Leah. I knew that this would was just a phase in her development and that there would be a day that I would box up all of her PECS cards to be stored away.

Like I said the evolution of speech is different for all of us, but the life lesson I have learned is we should never take our voices for granted. As you never realize how much work one must go through just to say a simple word.

Genetic Testing

Prior to Leah’s diagnosis she was seen every 3 months at Children’s Neurodevelopmental Department where they would track her development and tried to help us figure out what was going on with Leah. They decided to do a chromosome SNP array which is a genetic test that can detect changes in a person’s chromosomes. They already had her blood banked because they tested her for Fragile X syndrome which she did not have. So, they thought it was best to do the SNP array as well as a chromosome analysis.

After they gathered all of the results, they had Alex and I schedule a genetic counseling appointment. They nicely explained to us that they found a rare duplication in one of Leah’s chromosomes. I honestly cannot remember which chromosome it was, but they told us they cannot give us much information as it is extremely rare, but it is linked to developmental disability.

But the most important thing that came out of the genetic counseling appointment was that they asked if we were planning to have other children in the future. At that time, I could not think about having another child because of all the things that were going on with Leah. But they told us that if we ever planned on having any other children that they would recommend us to let them know so they can run more tests as there was an exceedingly small percentage that we would not have a child without a severe disability.

When you hear that your world is shook a little bit because during this time Alex and I were constantly asked if we were going to have more children. We always redirected these conversations as we did not discuss our struggles and we did not want to explain to others that was put onto our plates. Underneath was the truth is we did not want to bring another child into the world as we already knew the struggles and barriers that were faced for our Leah.

As we made a commitment to each other that we would do whatever it takes to get the proper care and treatment for our daughter we never talked about having more children as we both left that genetic counseling appointment knowing that our Leah is just what we needed.

As for at that time we did not realize the financial costs that goes into raising a child with a disability but that will be a topic for another day.

A Trip to Holland

A few months into behavioral therapy I started to feel that I was breaking into a million of little pieces, I was mentally and physically exhausted, watching my daughter cry and have meltdowns for hours on end became tolling. It was one of the darkest times in my life, then one day Leah’s behavioral therapist realized that she needed to shift part of the session on helping me come to terms with my grief.

So, as we were sitting down, she looked at me and said it’s ok to say that this sucks, this is hard, and you didn’t expect for this to happen. And most importantly that it is ok to say it out loud, so she told me to say this sucks and at first I refused because I kept telling her it is what it is and I have to be strong for my daughter. But then as my eyes started to fill with tears then she started to tell me about a trip to Holland...

As she was reading this short story, I burst out into tears, I realized that yes! I am in Holland and I have to prepare myself for this adjustment. I may always look at other people and think how great and or easy their life is while they are in Italy, but I have something spectacular while in Holland. If you have not read a trip to Holland, I hope you do and let me know what your thoughts are.

BAER Test

When Leah was a younger, she was frequently seen at Children’s Hospital’s ENT and at their Audiology Department. She would have frequent and reoccurring ear infections, so they decided to remove her adenoids, tonsils and to put tubes in her ears. All in hope that this would help with her hearing, because during this time Leah would get her hearing checked with the audiologist every 3 months and each time, they could not get a good gauge on the hearing in her left ear.

So, after a year of inconsistent tests, and Leah still not responding to certain sounds, and still being nonverbal they wanted to rule out hearing loss. So, Leah was scheduled to be sedated for a BAER test (Brainstem Auditory Evoked Response). The BAER test is used to evaluate the function of the auditory nerve which the nerve carries sound through the ear to the brain.

When we got the results that Leah has perfect hearing it was such a relief as we were able to close this chapter in her diagnosis, but it just meant we had to keep pulling back the layers to uncover on how we can properly support Leah.

This is a picture of Leah after the BAER test, and for years Leah had to carry everything in her little bucket of her Mickey Mouse and Friends with her everywhere she went.

Leah's Evaluation

After Leah’s ADOS evaluation, the Psychologist gave me a handwritten note that that had five names on if. She told me to not hesitate and call right away to let them know that she was the one referring us to them. As I took the note, I had no idea why or whom I was calling but I knew it was something that I had to do.

Prior to this I prayed the hardest I have ever done so in my life, I prayed for guidance, I prayed for support, and I prayed for someone to answer my call. The list had five names of both places and individuals that provided behavioral therapy. As I started calling each person, I would stop say a prayer asking for much needed guidance and for someone on the other end of the phone to answer my call and to be willing to help my young daughter. As I got to the bottom of the list an incredibly special someone answered my call, she had an opening in her schedule and was able to take on an additional client.

This picture was taken a few months after Leah started behavioral therapy; the significance is that this is the outfit that I dressed Leah in when we first met her therapist. I look back at this picture and it helps me reflect on the troubles I had connecting with my young daughter. Prior to behavioral therapy Leah had a solid concrete barrier that was placed around her, and I felt that she was trapped inside her own world. Leah would not make eye contact, would not point to objects, ask for help, meltdowns and outbursts were constant because she had no means of knowing how to communicate.

As a mother, I am still unsure how I survived the first few years of behavioral therapy. Watching my young daughter sit and cry for hours until she pointed to a object in a book or waiting her out until she made solid eye contact. There were days where I could not help but try not to cry myself, but I knew I was doing what was best for my daughter. I had to hold strong and learn a totally unconventional way on how to be a mother.

But what came out of all of this was the one person who answered my phone call was also answering my much-needed prayer. This person is someone that I will forever be grateful for, she was the first therapist to help my daughter, but she also created a strong foundational team of therapists that worked with Leah 7 days a week. Yes, you read that correctly Leah had up to 35 or more hours of therapy per week. Her therapists became family and all though most have moved on as Leah got older, they all share a special place in our hearts! This was the beginning stages of Leah being the child who she is today!