Tag Archive for: Down syndrome
Right now the additional needs’ community is full of stress and anxiety. It’s the process not the outcome that helps alleviate stress and anxiety. That is one of the reasons we want artists to get involved and not worry if they will win one of the top prizes. With that mission in mind, we came up with “Support individuals with additional needs as you support your local businesses by becoming an Angel sponsor for ANI’s art contest. “
ANI constantly strives to see how our resources and events will be a win-win for everyone involved. As an Angel Sponsor you are encouraging individuals with additional needs to get involved with the art contest as you continue supporting your local businesses. That is a win win for everyone. We want to give everyone a chance to win a prize and that is the reason why we thought of this idea which was inspired by our CEO’s sister-law Heidi Sharpe. She and her family purchased two gifts cards from Frank’s Bakery in Bangor Maine and then did a drawing to give those cards away.
How it works is you, the Angel sponsor, purchases a gift card of $25 or more from one or more of your local businesses and mail it to Additional Needs, Inc. at P.O. Box 110124 Naples, Florida 34108. Please e-mail us at Info@additionalneeds.info
Thank you for helping individuals with additional needs de-stress as you support your local businesses in these trying times.
There are so many things I’ve learned on this journey of having a child with additional needs, specifically, Down syndrome. These things I have learned, I often wish others would learn or at least benefit from knowing.
Take for example today. My adorable son has been greeting us every morning with “school is closed.” We eventually manage to get breakfast started and then him dressed. Today was a more difficult start to the morning. I could tell that something was amiss from his waking. I wasn’t sure if he had a restful night’s sleep and therefore he was just not wanting to get ready for the day. He wanted to be home only, having a playdate with mom.
When it came to getting dressed, he was UPSET. Getting dressed wasn’t an option for him. He was mad and frustrated and exhibited that clearly with his behavior.
After calmly addressing his behavior and verbally reflecting with him his options and choices, I left him to get dressed. He happily did so!
We headed for school. I asked him to meditate in the car. Then he had the choice of listening to his favorite chapter book we recently started or to listen to music. Book it was! Once the chapter was finished, he was ready for music.
We were in carline and he pecked my cheek with his cheerful kiss. He exited our car and walked proudly and confidently towards his assistant. As I watched, he was smiling the entire way in. Every safety patrol who he walked by and who was watching him, smiled in equal admiration. My heart filled with joy, love, admiration and gratitude for that moment, wanting to replace the earlier incident with much more positivity.
Here’s what I wish we all put into practice on a daily basis:
We ALL have moments of drama that we can choose to over dramatize in our heads or let go and allow the moment to pass. It is difficult sometimes to stop the stories we make up in our heads once something has occurred that we have difficulty processing. However, when we choose to allow the moment to pass, we allow ourselves the opportunity to embrace a more positive perspective and reality. We allow ourselves to be more present and allow others to embrace the moment with us. We allow ourselves the capacity to love and be loved.
May you choose to recognize when you are having one of those moments that keeps you in your head and choose to shift and find the unique blessings presented to you in your life, however simple they may be.
The fact that you are on this site means you are searching for help. Hopefully, I can provide you with some answers.
How important is it that you have your child’s vision checked? It might interest you to know that 70% of the brain utilizes vision; that is why any neurological or developmental delay can impact how your child processes visual information.
While many parents assume the pediatrician does an eye exam as part of your yearly wellness exam, all that is performed is a vision screening. And, when it comes to children with additional needs – it can be challenging to determine how well your child can see, unless the doctor has special training in this area.
How can a child pass a vision screening or eye exam, yet still have a vision problem?
Have you been told your child sees fine, yet he or she struggles to copy words from the board to paper on the desk in school? Or perhaps, your child just struggles with reading, or remembering what was read? Does your child have to touch everything in order to “see” it or feel balanced?
The key here is that just because a child can see the letters on the eye chart, which is typically 20 feet away, it doesn’t mean your child has all the visual skills required for reading, learning, or functioning in life.
In her book, Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child, Ricki G. Robinson, MD, MPH, Clinical Professor of Pediatrics at Keck School of Medicine, states:
“Precise coordinated eye movements are needed for focusing, eye tracking, and binocular vision (eyes working together). All are required for maintaining eye contact and spatial awareness, even hand-eye coordination. … However, if these skills are delayed, they can be learned.”
To whom does this apply?
This applies to all children, especially those with additional needs. For example, I saw a child with Down Syndrome who could see the letters on the line on the eye chart that is referred to as 20/20. The parents were even told his vision was fine. However, as a result of a developmental vision evaluation, we were able to determine that he had trouble shifting his focus from seeing far away to being able to see at the distance necessary for reading. He could barely see up close. A special pair of bifocals fixed the problem. Optometric research has found that 65-70% of kids with Down Syndrome have this visual disorder (accommodative insufficiency).
Children with additional needs, including those on the autism spectrum, CP, Down Syndrome, ADHD, Fragile X, twice-exceptional children as well as gifted learners, all share one thing in common. They have eyes. In most cases, unless you have seen a developmental optometrist, you have either been told their vision is fine because they can see the letters on the eye chart, or that they are seeing the best they ever will, or there is nothing else that can be done.
In some cases, your child may have an eye turn that was “corrected” with surgery, or you are considering surgery. Depending on the cause of your child’s additional needs, the potential of an eye turn is significantly greater than in the neurotypical population. In fact, it can range from 17-50% compared to 2-5%.
While most ophthalmologists will be up front about the potential of multiple surgeries being needed to achieve straight eyes, little is shared about what a child’s world looks like when they have an eye turn (no matter how small). Once the eyes appear straight, it is assumed their vision is fine, even though it may not be.
Many children struggle with double vision, or vision that fluctuates where print or objects appear to move on the page even with the slightest eye turn which, as parents, you may or may not be able to see. Because they lack the verbal skills to tell you how they see, and also because they have no idea what their world should look like, they don’t say anything. Instead they show you with their behavior, if you know how to interpret the signs.
Some of the signs include difficulty paying attention, poor reading comprehension, difficulty reading or learning to read, problems with balance or movement and clumsiness. For a longer list, click here.
Who should evaluate your child’s vision?
As a developmental optometrist, I can tell you, developmental optometrists have a wealth of training in how to evaluate overall visual function – that means how we use our eyes in daily life. We also have specific training in how to correct visual deficiencies without surgery. Most developmental optometrists understand how to help children with additional needs.
Sometimes we are lucky, and all the child needs is special glasses. In more severe cases, it can require a combination of special glasses plus an in-office program of optometric vision therapy. The good news is that developmental optometrists have been able to help reduce the challenges that additional needs children face on a daily basis. In some cases, special glasses can eliminate toe walking, and in other cases, the glasses help children to be able to see to read where previously reading was impossible.
In her book, Raising a Sensory Smart Child, Occupational Therapist, Lindsey Biel, states,
“Consider going to a developmental optometrist even if no one refers you, because an undiagnosed vision problem is a major obstacle for any child.”
Correcting vision problems in children with additional needs can be life changing. To find a doctor who can provide your special need’s child with this type of vision care visit: www.covd.org.
Written by Dr. Matthew Walsh
Dr. Matthew Walsh is a developmental optometrist with an office in Naples, FL. Dr. Walsh provides specialized services in the diagnosis and treatment of vision problems that interfere with reading, learning and overall functioning in life. For more information visit his website: www.naplesvisiontherapy.com
Additional Needs, Inc. all started with one question to a friend, “Do you know of a place or an activity I can volunteer for?” The answer, “yes” started me on my additional needs journey. I started to volunteer for Art Fest Naples which benefited individuals with autism and their families that received services from Eden of Florida. As I was getting to know the individuals and their families two of the families made a lasting impression on me. I learned this is not just a journey for the families with additional needs, it’s a journey for society as a whole. The Kandels and the Stanleys shared their stories with me and how they’ve been advocating for their children with autism along with sharing resources with other families.
Year after year with the art fest, I got more and more involved with putting the show together as well as learning more of what the families needed and wanted for their children. One of my side goals was to find ways for individuals to gain meaningful employment. This is one of the biggest concerns for families. Within just a few years I became the logistics director and a year after that our son Jack was born. The pregnancy went very well and we thought all was set for a natural childbirth.
On the day that Cynthia went into labor that all changed. Jack’s heart rate started to drop with each contraction Cynthia experienced and our doctor told us they were going to need to do a C-section. This was the last thing we wanted. Throughout the pregnancy Cynthia worked with alternative medicine practitioners. Receiving this news, Cynthia called up a practitioner-friend who rushed to the hospital to assist in making a natural delivery possible. The practitioner helped with Jack’s heart rate and Cynthia had the natural birth she desired. From the moment Cynthia saw Jack she thought he was with Down syndrome. She told this to me later and said she saw it in his eyes. The funny thing is that afternoon, after Jack was born, I went to walk our dog and as I looked into the rearview mirror and saw his eyes in mine. All I could think was he has my eyes! I had no clue that Jack was with Down syndrome.
It wasn’t until our first pediatric visit that our doctor made us aware of the possibility of Jack having a heart issue and being with Down syndrome. A week and a day after delivery, we found out that Jack’s heart rhythm had changed. We had to meet with the pediatric cardiologist immediately. Forty five minutes later we met Dr. Lowell. It was through that cardiologist visit that it was confirmed, Jack was with Down syndrome and that he was going to need heart surgery ASAP.
In my desperation, I went into learning mode. That entailed hours upon hours on the computer searching about Down syndrome and the resources that our area had or didn’t have. I was doing this in the middle of the night, neglecting my own sleep and checking on our son every half an hour to make sure he was breathing ok. What frustrated me most was that doing a search for information was very difficult and time consuming. So, I began bookmarking sites that I found helpful but very hard to find. I then thought back to the Kandel and Stanley families and how they always shared what they had learned. I thought I would do the same by building a website that had all the resources for individuals with Down syndrome in the Collier County area on it. I thought the best way for people to find it was to name it DownsyndromeNaples.com. It was that simple. now there were located on one site.
From day one I wanted to have a site that covered all resources for additional needs but at the time of building DownsyndromeNaples.com I was focused on our son and making sure his surgery went well. It took a few years to get grounded and be able to start on Additional Needs, Inc. Now here we are! Building a company that has all the resources and tools to assist individuals with additional needs in reaching their full potential. All run by individuals with additional needs in every state. Jack is doing well and I hope if he wants, one day will run Additional Needs, Inc.
It was just before Thanksgiving and I was picking up holiday supplies at the local home improvement store. My son was with me doing this quick errand with me after school. We were approaching the checkout line and he noticed a dog. He has developed quite an aversion and apprehension of dogs. So there we were items in hand and he wanted to leave the store. I quickly and calmly explained to him that there was no way we could leave the store. I needed to buy the items and only then could we leave.
It was interesting, because the woman who had her service dog immediately wanted to go move and make accommodations. A sweet soul, I knew that she was well-intentioned. I shook my head however acknowledging I didn’t want her to move, this was a teachable moment. Another woman was watching as well and identifying my son’s fear. Again, I shook my head at her as well acknowledging I didn’t want her to identify with my son’s fear. At that very moment I looked at my son who stood frozen and said, “This is where you choose power or fear. Which are you going to choose?” The second woman looked shocked by how I was speaking to my son thinking because he was with Down syndrome that he wouldn’t understand or wouldn’t get it . Oh contraire! He responded, “Power!” That’s when I took the opportunity, smiled, nodded and said, “ Okay, take a deep breath look at the dog and tell him, I am more powerful than you. You don’t have to say it aloud you can say it in your head…Now take another breath and walk!”
He did it! It was a most transformative interaction not just for my son or myself, but also for the two women who were standing and witnessing this experience.
After he passed the dog I knelt down and looked at him as I pointed to his heart and said “ I am so proud of you! And you should be so proud of you! You shine! You chose power! That should warm your heart.” When I saw the two women’s faces they were smiling, beaming in approval.
It is in these simple moments, I recognize that we as adults need to do the same: recognize our fear, own our own power and strength, and move ahead. We also need to remember not to allow other people’s perceptions of us to identify who and what we can do. When we do that as parents, we effectively show our children how to do the same.
Someone once said that it “takes a village” to raise a child. Nothing could be truer than this quote when you have a child with additional needs! I was lucky enough when our daughter was diagnosed on the autism spectrum in 1993 that I knew ONE other person who had a child on the autism spectrum. At that time, it was 1 out of every 10,000 births! I went out to lunch with this mom (Julie) and we each shared our history with lots of tears, lots of supportive words, and it was the start of a beautiful 25 year friendship. Of course, my husband, our other two very young children, and our families were there to listen and be supportive. But our families all lived so far away that no one really knew what our day-to-day struggles were. And who really wants to get on a long distance phone call and complain, explain how scared you were, or to cry. As we were trying to assemble our multidisciplinary team of speech and language pathologists, occupational therapists, behavioral therapists, and physical therapists, we met some incredible individuals who became a part of “our village”. I felt very comfortable sharing my thoughts and feelings, asking for support, and started to feel like we really had a team to help us and then to pay it forward by helping every other children and their families along the way. This is my definition of what a village is! Find “your village” and then help the next family you meet with a child with additional needs.