Categories
Parenting Special Needs

Raising Independent Children, Part Two

Getting Real with Shadra Bruce

Letting Derek join the Army was hard, but nothing prepared me for the kinds of decisions we would have to make for Kyle.

Kyle was born with Down syndrome, complicated by the fact that he was also born with an almost total hearing loss. While the doctors were finally able to perform surgery when Kyle was 7 to restore his hearing, by that time, he was speech-impaired. We tried everything to improve his speech – therapy, sign language, and even a $7,000 piece of technology that let him speak in picture symbols, which he used to repeatedly ask for McDonald’s french fries all day every day.

Kyle was – and is – an extraordinary person. He has a delightful personality, a devious sense of humor, and a really fabulous growl that he uses when people piss him off. He is awesome.

We advocated for and fought for Kyle in school after school and with service after service. We made sure he received the care he needed and deserved wherever he was.

How do you know that you are doing what’s best for someone who has a limited ability to tell you how he is feeling or what he wants out of life?

Dave and I are very good at reading Kyle…but we never dreamed that we would leave him in Utah when we moved back to New York. Some people think what we did was cruel, but we know – beyond a shadow of a doubt – that it was the best thing we could do for our son.

When we were living in Utah, Kyle reached a point where Dave and I could no longer effectively care for him. Part of this is because Utah sucks at caring for the disabled – the waiting list to get services is about 10 years long. Since we couldn’t lift Kyle when he fell, couldn’t get him in and out of the shower, and had about 9 years left on the waiting list, we started looking for alternatives and found one in the form of a group home – a skilled nursing facility that provided work, activities, oversight, and caretakers and complete accessibility (Kyle reached a point where he could not even get up and down the stairs in our home; the only showers were up or down stairs).

Kyle loves his home. When we still lived in Utah, we would bring him home to visit. He would be happy to see us, but after a few hours he would ask to go “home.” Home for him was no longer with us – it was his place, with his friends, and his new family.

When we decided to return to New York (for a variety of very necessary reasons), there was simply no way we could tear Kyle away from his new life, even though it was difficult for us. He found his path. It was up to us to respect and honor – and support it. Just because he is disabled doesn’t mean he isn’t perfectly capable of letting us know his wants and needs.

Categories
Parenting Raising Healthy Kids Special Needs Toddlers

Is Your Child Meeting Communication Milestones?

Getting Real with Shadra Bruce

My granddaughter Hallie has recently made giant leaps with her communication milestones. She progressed along the continuum of saying mama, dada, and nana; those words were followed fairly closely by the other members of her household with more difficult names, papa, “Pak” for Parker, and “Ka” for Anika. Then, she learned “yah yah” for yes and “no no” for no, which made it much easier for her to tell me which YouTube video she wanted to watch (Hallie loves music, and since she was a tiny baby we have watched a few songs each day together – she is particularly fond of Marianna’s Trench).

Those words were followed by “hot” – which she says with a British accent, thanks to her dad, and “cold” and “hot” and “apple.”

But all of a sudden, Hallie is saying things like, “I don’t want to” and “I don’t know” and “I have no idea.”

So far, she is meeting or exceeding communication milestones, which makes her mama happy. I am just trying to get “I have no idea” recorded because it’s so ridiculously cute.

There are basic communication milestones that all parents should know about to make sure their babies are progressing. babbling, cooing and making cognitive connections about the meanings of words. While every child will develop at a different rate, if they miss a milestone or seem delayed, it’s worth checking with your pediatrician. If there is a cognitive reason for the delay, early intervention is key. Regardless of the milestone, if you notice that something’s not right with your child’s speech, it could be a sign of a bigger problem.

Around these ages, your child should be able to do the following:

By 12 Months

When a child reaches 12 months, they should at least be able to say mama or dada. At this age, they should be able to use their gestures to get your attention, like pointing at something they want. They should also be able to clearly say a few of the consonants. And even if they cannot yet say them, they should understand words like bye-bye and no. Your child should be able to say whole words by the time they’re fifteen months and babbling is appropriate at this age.

18 – 24 Months

Your child should be able to identify certain body parts, like the ears, when asked about them. They should also have at least six to ten words in their vocabulary. They should be able to clearly communicate to you their needs and you should have no problem understanding what they want. They should slowly increase their vocabulary by one new work per week till they reach around 24 months.

24 – 25 Months

24 months marks a major milestone and your child should be communicating effectively. They should be able to respond to direction that you give them and engage in play. They should be able to speak to dolls and stuffed animals and have a “conversation” based on their abilities. They should be able to easily join two words together to make sentences and accurately identify household items commonly used, like their toothbrush. They should be able to quickly identify and say the names of more of their body parts, like eyes, nose and mouth. They should also be able to quote a few nursery rhymes with the help of an adult. They should be able to communicate simple questions regarding their needs and wants. Sentence structure should change from little two or three word sentences to full sentences.

Above 30 Months

When a child reaches the 30-month mark, they should be able to clearly be understood by the entire family. They should be able to use pronouns like I, you and me. Some strangers may have a hard time understanding the child, but to those who are around them all the time it should be no problem. They should be able to speak in short and clear phrases and to understand short instructions they are given. They should interact in conversation and play with other children and their speech should be clear. Any stuttering that would have been present should be gone by the age of 3. By the time the child reaches 4 years of age, they should have all their consonants mastered.

While these are just basic guidelines, anything that seems out of the ordinary to you should be investigated by a doctor. Again, all children don’t develop the same, but they should at least hit some of the verbal milestones on time in each age category.

Categories
Special Needs Travel

Disneyland and the Special Needs Family – Part Two

We recently took our family to Disneyland, which was quite a unique experience, since we were traveling with our adult disabled son, Kyle, who has Down syndrome and is mostly confined to a wheelchair. He lives at home with us, and Disney was a wonderful experience for him. It was for us, too…but it was exhausting!

Going to Disneyland is never without its need for planning, but if you’re traveling with someone who has special needs, it’s even more crucial to plan ahead. In addition to talking to customer support at Disney several times prior to arriving, we also mapped out how to approach our visit.

Unless you can afford to stay on Disney property at a Disney hotel (we could not), you should plan to arrive when or before the park opens. Because Kyle is wheelchair bound, we have a disabled parking tag. This was very useful at Disneyland, where you can spend a good hour just getting from the parking lot to the park. For the disabled, there is priority parking and special shuttle vans that allow the person in the wheelchair to remain safely in the chair while being delivered to the park.

Once you arrive at the park, your first stop should be Guest Relations to discuss your specific needs with the staff.  While Disney no longer allows special needs guests to skip lines because of the abuse of that service by able guests (who either bring someone in a wheelchair who doesn’t need it or otherwise falsely represent their need), they do offer, for most rides, something similar to a FastPass for special needs guests so that they do not have to wait in the line as well as alternate lines for wheelchair guests where needed to make it easier to load them onto the ride or transfer them from the chair to the ride.

The Disability Access Pass (DAS) is useful not only for mobility-based needs but for other special needs as well. Our other son has Asperger’s, and the DAS pass allowed us to forgo the long waits in crowds that might otherwise have triggered his overwhelm. We would simply obtain a DAS, go find something else to do, and come back at our appointed time for the ride.

Disneyland does everything they can to make the experience positive for every guest, and we were thrilled with what we were able to do for our kids. It’s worth planning ahead and being flexible about what you will be able to accomplish while there.

Have you taken special needs family members to Disneyland? What was your experience like?

Categories
Special Needs Travel

Disneyland and the Special Needs Family – Part One

Last month, we took our family to Disneyland for Spring break. We had two-day passes to Disney. While it was not our first trip to the amusement part, it was the first trip we had ever taken there since Kyle has been mostly wheelchair-bound.

The last time we went to Disneyland, Anika was four and I spent nearly three hours standing in line with her so that she could meet Ariel, the princess du jour. The last time we went to Disneyland, Kyle’s spine compression had not yet been discovered, he had not yet had surgery to fuse C1-C3 and install a metal plate at the base of his brain, and he had not yet experienced the debilitation of the result of that compression. (For those of you who don’t know, Kyle is our now-24 year old son with Down syndrome).

We had a phenomenal experience, but we took many steps ahead of time to make sure we would. If you’re traveling with a special needs child or adult to Disneyland, start with these tips:

  • Call the park and talk to their customer service people about your specific needs. Because there has been so much abuse of their special needs policies, they no longer offer line skipping. Be sure you know what to expect and decide whether or not your family member can handle the experience.
  • Learn about the rides before you go. We thought Kyle would love Autopia – and he did – but he could not get out of the ride and we could not get him out without (literally) serious personal injury.
  • Buy a multi-day pass so that when your child (or you) wear out, you can leave, head back to the hotel, and not worry that you might have missed something.
  • Obtain (if you are eligible) a handicapped parking pass from your local DMV before you go. It is the only way to get priority parking and shuttle service.

Have you taken special needs kids or adults to Disneyland? What advice would you add?

Categories
Let's Talk Special Needs

The Paralyzed Boy Who Walks

Note to my readers: Kara is my cousin’s wife. She is brilliant, talented, kind, thoughtful, and an inspiration to mothers everywhere, but especially to those whose children have “invisible” challenges. I am deeply honored and so grateful that she has shared her story here, and I only wish you could meet her beautiful family. I promise, every word of this is worth reading and sharing. (Warning: keep a tissue handy). -Shadra

A very special contribution from Kara Lyn Lund

When my youngest son was two years, two months, and one day old, he sat down next to his big sister to eat a bowl of fruit loops and his life and the lives of everyone in our family changed forever. That moment happened to be the moment when a congenital defect that we were completely unaware of suddenly manifested. He was probably born with it. It was something called an arteriovenous malformation, or AVM. It’s a defect caused (in his case) by a genetic disorder called Hereditary Hemorrhagic Telangiectasia, or HHT.

AVMs are where blood vessels don’t form properly and cause weak places in the vascular system. They can be anywhere in the body, and for many people with HHT, they just cause annoying nose bleeds. However, when one of these AVM’s bursts in the brain, spinal cord or lungs, you can imagine how much worse it can be. In my son’s case, a large AVM was buried in the upper part of his spinal cord. As he sat to eat breakfast that morning, that AVM burst for no apparent reason. It simply couldn’t stand up to the pressure of a beating heart and circulating blood any longer. It was like having a stroke on the spinal cord, and caused almost complete paralysis within a few hours. Although I did not understand what had happened to him until the following evening, I will always remember the colorful bits of breakfast cereal that spilled across the table when he suddenly lost control of his limbs and everything changed.

His story is a long one. We spent about two months in the hospital while he had lifesaving surgeries, complications, more surgeries, tests, and therapy. During this time, my husband and I learned how to do all the new cares we would be responsible for when he left the hospital. He came home with a trach and ventilator to help him breath, a g-tube for feedings, and more equipment than I care to list. Although he has grown stronger in the (almost) three years since his injury, he still uses all of that equipment and more. Wheelchair, stander, commode, hand splint, foot braces, torso support, the list could go on. He has gradually gained strength back in his arms and even gotten some very limited use of his fingers, however we have never seen any indication of sensation or control below his chest. While we watch and wait for medical and therapeutic advances to give him more hope of walking, we do not anticipate him being able to walk again without some considerable miracles.

And he is one of the happiest and smartest five-year-olds I know. He will do great in life.

Now, let me tell you about my other paralyzed child. My oldest child.

My oldest son has always been what you might call quirky. He’s always been different. His speech therapist when he was three called him “unique.” In his kindergarten graduation program, he stood staring out at the lunchroom full of parents and only opened his mouth to yawn once while the other kids sang songs about letters, numbers, and the days of the week. In first grade he refused to read aloud for the state reading test, which resulted in a letter claiming he did not know how to read. We all knew he could read just fine, he just wouldn‘t read under those circumstances. I could make a list about a mile long with all the things he did that made him just different enough from the other kids. Enough to make me wonder if there was something going on with him.

He has always been sensitive to change. And by sensitive I mean the first time we moved when he was about 18 months, he had a look of terror on his face as he watched people carrying furniture out of our apartment. It was as if the world were collapsing in on itself. Even with small changes he needed advanced preparation. So in second grade, when I brought up the idea of taking a lunch to school rather than eating the cafeteria food, he definitely had a hard time with that idea. I told him I would send a note to his teacher so that she could help him get to the right place and that everything would be just fine. He grudgingly agreed to try it out.

As it turned out, everything was not quite fine. His teacher made sure he got to the lunch room and found a place to sit. Then she left to eat her lunch in her classroom. He just sat. His lunch also sat, unopened, on the table in front of him. As he sat, the tears started to come. A boy asked him what was wrong, but he wouldn’t talk to him. The boy went and found the principal who came to the lunchroom to find my son standing with his face against the wall, crying. His lunch was still untouched. He told me later that he stood against the wall to hide. Changing one small thing in his routine made him want to hide. Eventually, the principal was able to talk him into sitting down again. They opened his lunch bag together and pulled out the contents so that he could eat. While most of his quirks could be explained away by saying he was shy or reserved or smart or just different, I knew this reaction was outside the realm of “normal.” While he had had some minor issues in the past, this made clear to me that he was going to need more help to succeed in school and life in general.

Getting that help has turned out to be a long process. It’s taken years just to get a diagnosis. I’ve repeated stories of his infancy and childhood to numerous doctors and therapists.  Recently, he was diagnosed as high-functioning autistic. Over the years, I have learned about autism and aspergers. A friend’s daughter was diagnosed with aspergers a few years back. I would watch shows that included high-functioning autistic children, and while not every symptom matched up, many of them did. Sometimes it was like looking at a reflection of my son. The older he has gotten, the more clear it has become that he has special needs that cannot be met by typical parenting or teaching. His anxiety has become more pronounced. He has even threatened to end his own life. He’s currently ten years old.

I feel like I am living with two paralyzed children. One needs a wheelchair and many medical and technological devices to help him live as independently as possible. The other one walks, runs, and jumps. One wakes up everyday ready for whatever comes his way. The other frequently has to be dressed and dragged off to school, not because he can’t do it himself, but because the world he wakes up in everyday is harsh and unpredictable. Navigating this world is overwhelming to him. When I look at my quadriplegic child, I feel hopeful for his future. He is happy and fun to be around, and if he were one day named homecoming king, I would not be the least bit surprised. We all admire his strength and determination. His biggest life challenges are there for everyone to see, and it is easy to see that they don‘t stop him from doing much. His older brother can walk just fine. There is nothing in his look that would suggest he is anything other than normal (Unless he has just colored his nose purple, which he did yesterday. I laughed when his teacher sent that text!). But inside, he is paralyzed. I don’t have to worry about his ability to move, but I frequently worry about his ability to navigate this life. Will he have friends? Will he be made fun of? Is he going to be able to participate in the same activities the rest of his class does? Will his teachers be patient with his inability to communicate his needs (in spite of a substantial vocabulary)? Will he be patient with them when they don’t understand those needs? Of my two special needs children, I have far fewer fears for my physically challenged son. I know that wherever he wants to go, he has the wheels, ramps, elevators and people to help him get there. For my autistic son, the path is unclear. I believe he has great potential. He is bright, and passionate. But there’s no wheelchair for him. He’ll have to learn how to jump emotional and mental hurdles that most of us step over with ease. I believe he can do it, but it will be no less miraculous for him than it would be for my wheelchair-bound son to someday learn to walk again.

 

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Book Reviews Special Needs

The Sensory Child Gets Organized: A Must-Have Book for Parents

Getting Real With Shadra Bruce

Most parents worry about organization before school starts, but for us, it takes a good month before we can figure out how we can best help our son, who has Asperger’s, which is either aggravated by or in addition to a sensory disorder. Organization is one of the most challenging areas for him. When you combine that with his other major challenge, communication, having tools and solutions in place to help him be successful at school become critical.

In addition to finally hitting the grade where everything “counts” – 9th grade – Parker also started a brand new school this year, as we moved across the country over the summer. At his old school, he had developed very comfortable routines and knew how to navigate his day. Organization was a problem, but most of his teachers were familiar with his challenges and with us, and knew to include us in every aspect of his academic planning.

All new teachers, all new school, all new routines…and Aspergers/sensory difficulties.

The Sensory Child Gets Organized by Carolyn Dalgliesh provides usable and easy to implement solutions for kids who struggle with sensory issues, anxiety, organization challenges, and other issues.

The book covers everything from creating safe spaces in the home for play, study, and living to learning how to travel with the sensory child. The most important sections of the book for me came toward the end. Because my son is 13 and we had late diagnoses for both the sensory disorder and the Aspergers (in part because we were already dealing with a seizure disorder and eye issues) we have already learned to cope with many of the things this book helps parents of younger kids deal with. But there is a treasure of resources Dalgliesh includes at the end – sensory child products for each “zone” that can help, and guidance for parents working to get support of either an IEP or a 504.

The best section, though, was the month-by-month guideline for surviving the school year.

In September, it’s simply a matter of helping them get used to the schedule.

In October, it’s managing all of the paperwork.

But as we enter November, and this is where, for our family, the struggles the school year will present really start revealing themselves (we know by now which teachers are flexible and which are difficult, and which parts of the day are most difficult for our son).  November is where Dalgliesh recommends a focus on homework strategies.  Following her monthly guide will be very helpful.

If you have a child who struggles with sensory issues or a lack of organization, The Sensory Child Gets Organized is truly a must-have book. It is one you will want to keep handy for quick reference as you discover new things about the challenges your sensory child is facing.

Raising a sensory child is never easy, but this book gives you ideas and tools to help you help your child be more successful.

Read a great interview with the author by Kristen Kemp on Parents.

Categories
Special Needs

Difficult Diagnosis? 5 Ways to Cope with Your Child’s Illness

Hearing that your child has a serious illness or disease can be difficult to comprehend. Coping with the diagnosis, and the pain and hardship that it can bring may be overwhelming to deal with on your own. However, finding ways to combat the illness can be made easier with the following five helpful tips.

1. Healthy Diet

A diagnosis of a child’s disease or illness can be like a punch in the stomach upon first hearing. You may feel overwhelmed, crippled and unable to know where to turn. With a little research and knowledge, you may be able to get a better grasp of the situation and manage their care through a healthy diet. Specific fruits, vegetables, whole-grains and vitamins, or even in same cases omitting some of these items, can aid in your child’s health and development and give them the power to combat the disease.

2. Life Coaching

After receiving the report that your child is ill and unable to lead a normal life, you may find it challenging to go on. Giving in to your grief and asking why this has happened to your family are typical responses. A life coach, such as those found in the Noomii life coach directory, can help you manage your pain and offer tips on how to move forward. By implementing a plan to find a suitable treatment and recovery program, your child can enjoy a happy life. A coach can also provide guidance and support through your most difficult of moments.

3. Exercise and Meditation

If your child is receiving treatment for their illness, they may need to find an outlet for the pain. Exercise and doing the things that provide comfort and excitement can aid them throughout this process. Taking a hike through the woods, biking, summer camp programs and movies can take their mind off their worries. You can also provide them with meditation exercises to get them through painful treatments.

4. Natural Health Supplements

Health supplements such as vitamin A, B, C and Omega-3 fatty acids all contain powerful antioxidants that can aid your child throughout their illness. If they are receiving treatments for their illness, their immune system can run low. Providing beneficial nutrients can aid in their recovery and even keep their illness in remission for a long period of time. A health food store and online research can provide beneficial information as to what sources go best with their specific illness or disease.

5. Second (or Third) Opinion

Once you’ve had the initial diagnosis on your child’s illness, you may be wondering if there is anything else you can do for them. A second or third opinion can verify the initial physician’s findings, but it can also prove them wrong. Having other opinions can also aid in their recovery plan and finding a specialist that handles their specific illness may offer alternative suggestions on how to proceed.

Having your child diagnosed with an illness or disease can be one of the most difficult challenges you will ever have to face throughout your lifetime. However, important steps in their treatment plan and recovery can be beneficial with a healthy diet, life coaching, support groups and natural supplements.

Categories
Special Needs

Cord Blood Banking is Important for all Ethnic Groups

Getting Real With Shadra Bruce

Cord blood banking is a painless and safe way of collecting the blood left in a newborn’s umbilical cord and placenta and storing it for potential future medical use.

Cord blood contains potentially lifesaving cells called stem cells and it is much easier to match transplant patients using cord blood than with other sources such as bone marrow from adult donors. This article looks at why cord blood banking is particularly important for people who are from different ethnic groups.

HLA Type

Human leukocyte antigen (HLA) is used to match patients and donors for bone marrow or cord blood transplants. It is important to get as close a match as possible to your donor’s HLA markers as this will reduce the risk of your immune cells attacking your donor’s cells or even attacking your own body directly after the transplant.

Ethnic Group Percentages

There are differences that exist in the frequency of certain HLA types among different ethnic groups and for this reason, you are far more likely to find a good match with someone coming from the same ethnic background. A good example of the current statistical inequality is highlighted by the fact that African-American patients requiring a transplant have a particularly difficult time locating a suitable donor, representing approximately 14% of the population and there are therefore fewer potential donors available.

HLA Variations

Another valid reason why this ethnic group struggle to locate a suitable donor is that there is generally a much greater variation in HLA types amongst people descended from an African background than in any other group. Some people who are from a combination of both European and African ancestry may actually find that they have fairly unique combinations of HLA types that are not found in either parental population.

Battling Against the Odds

People from an African background are facing a stiff numerical challenge and a battle against the odds to find a suitable donor when compared with someone from a Caucasian background, because there needs to be three times as many volunteer donors from ethnic minority backgrounds in order to successfully find a match as there would be needed for someone needing a transplant who is Caucasian.

Advantage over Bone Marrow

It is vital to increase the number of cord blood donors amongst ethnic minority groups because they have a greater chance of getting treatment using cord blood. It is very hard to find a suitable bone marrow donor match, whereas with cord blood, a partial match is acceptable.

Many Hispanic and Asian patients also have different HLA types compared to people from the Caucasian group and despite the fact that the inventory is continuing to grow, better awareness is needed to help highlight the importance of donating cord blood if you are from an ethnic minority group, so that future generations will hopefully benefit from the advantages of a well stocked cord blood bank that can balance the odds of finding a good match.

 

Categories
Let's Talk Special Needs

In the Mommy Trenches

Getting Real With Veronica Ibarra

Every mother knows about the mommy trenches, even if she does not use that term. The mommy trenches are where all the hard work of motherhood takes place. It’s where the dishes and laundry constantly need doing no matter how much others also help with the tasks. It’s where potty training never seems to end, and the whining over homework threatens to melt your brain.

I have been in the mommy trenches up to my elbows, maybe even my chin—struggling to keep the house from becoming a bio-hazard zone while also meeting the diverse needs of my family. Every mother knows how it is; every mother has been there, is there, and will be there. We do it gladly, sadly, gratefully, resentfully, and through so many other emotions without always taking time to feel them because there are things that need to get done.

While I have been in the mommy trenches, one of the things I have been working on – with the help of wonderful educators, my daughter, and my husband – is trying to help my son with his language development, which has been delayed due to autism. I don’t think of that as a bad word or even a scary word. It’s just a term that helps us understand a little bit of why things can be challenging for him that are not necessarily challenging for others. It is also explains why the mommy trenches can be a little bit more trenchier for me.

I take it on myself to do more to work with him, trying to be consistent, listening to the teachers who offer very helpful suggestions that I can use at home with him. I don’t expect him to make progress solely because of the activities he does in his special Pre-K program. This has meant my time is even less my own.

My mornings are spent doing my day job as content manager for my husband’s company and my afternoons are spent in the mommy trenches. Most of the time I’m just doing what needs doing, and still I try to squeeze out some time to blog for my own projects and read for my own pleasure. Even in the mommy trenches this can be done, though since my time is limited I have to be very choosy.

Recently I had one of the most awesome days. It was like a reward for all the time spent in the mommy trenches. My son came home from school, grabbed my face so we were looking into each other’s eyes, and said, “Make bacon, please.”

It was such a small request, but a momentous event. A three word sentence…with an implied subject, a verb, and a direct object. And an adverb. AND he looked me in the eye!

So I made bacon—tearing up with joy, and pride, and love.

The mommy trenches are hard. I know I’ll be in them for many more years to come. It’ll get harder and easier and better and worse. But even in the trenches there is joy and reward.

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Let's Talk Special Needs

Holidays with the Autistic Child

Getting Real With Veronica Ibarra

As I’ve been learning how to address my son’s autism so that he has the opportunity to grow and learn, it has meant putting a little more order into our routines and sticking to structure. This has been beneficial to all of us, but with the holidays comes a certain amount of chaos as we make exceptions and change things up to allow for the celebrating.

First, if you don’t know, autism is most basically a developmental disorder that affects the development of social and communication skills. However, though there are some commonalities among those with autism, it varies by degree in ways that can make it challenging to address. For my son, in addition to addressing his communication skills and language development, one of the issues we struggle with is sticking to familiar routines. Deviations can lead to anxiety and meltdowns that he cannot calm himself down from.

That’s one of the most difficult things to get others to understand. My son isn’t being a brat. He literally does not possess the ability to calm himself when he is distressed. It takes outside intervention by a calm person to help reestablish his calm. And anything unfamiliar causes distress … which brings us to the holidays, where everything becomes unfamiliar with the decorating and the changes in routine and the celebrating.

The holidays bring families together. This usually means more people in the house, and where it is usually quiet, there are now loud voices and laughter. Those loud voices might be joyfully cheery, but if quiet is your norm, then it can become just unwelcome noise. The usual bedtime is waived in favor of allowing youngsters to be part of the celebration until they drop from exhaustion. This is not a good thing for my son, and another one of those difficult things for people to understand.

My son is 4, and like most 4 year olds he likes repetition of favorite movies and songs, but it goes beyond that. Introducing him to new movies and songs is always a struggle. He cries, hides, and screams until he’s been exposed three or four times; then he loves it. How do you get others to understand and tolerate the process that is necessary when everyone just wants to sit down and watch a holiday movie he’s never seen before?

Then there’s the change in eating habits around the holidays. Sugary treats become the main snacking course and the family feast is made up of foods not seen too often. I mean, I don’t cook a turkey every day, do you? Well, sugar and my son are not an ideal combination. We have to limit him in a way we do not have to limit our daughter, so then it looks like we’re discriminating. However, at the same time my son is one picky eater, to the point where the only healthy things we can get him to eat are chicken and apples. There is no bribing him or negotiating. So then we look like we’re being too lenient.

Navigating the holidays has become more challenging than I ever thought possible as we try to enjoy ourselves and make it possible for my son to enjoy it too. Most of our family and friends are starting to understand, but it is still difficult when they don’t spend every day with us. Holidays mean making exceptions and deviating from the normal routine of mundane life. While this is what makes the holidays fun and exciting for most of us, it is exactly what makes it a time of anxiety and distress for my little guy …  and why I have to be more sensitive to his unique needs.