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Viewing entries tagged
special needs
Support is the key ingredient in facing every life obstacle. Without it, you feel alone, anxious and hopeless. But if there are some positive people surrounding you who continue to smile as life moves forward, much of the weight comes off your shoulders. And this has been what has made our challenge with our autistic son far less challenging!
When you enter the world of autism, you’ll be surprised how much support naturally comes your way (that is if you are open about the diagnosis). Every month you learn about something new. You meet other special needs parents who know more than any doctor. You meet some amazing therapists and teachers who you are eternally grateful for. Each person has an encouraging story to share or a piece of advice.
My heart sank after hearing my son’s diagnosis. But it was very soon after that he was placed in the right classes with the right services and support. That is when I finally felt at ease. I saw the other children. I saw that autism was not the disability I ever thought it was. I saw how much love they received in the classroom. And I almost felt bad for neuro-typical kids who weren’t in special needs classes. It completely changed my outlook.
But more than the professionals, no ones support was as meaningful as those of our family. The unconditional love they show my son means more than anything in the world. It is through their love and their embrace that my son feels the most part of our world. If they were to turn their shoulder and just assume that autistic kids prefer to be alone, my son would not progress nearly as much as he has. They have looked at him with more adoration than their other grandchildren or nieces and nephews. They accept all his quirks and all his charm. And as a parent, nothing makes you feel better than knowing others love your child as much as you do.
Sure there are times family members pass on advice that you are all to familiar with already. There is very rarely something they can inform you of that you have not learned of through the years. And it could be extremely frustrating to listen to them seeming to think they know more than you. But all this means is that they care and that they are there for you. So my advice to the supporting network: spare your advice, and just express your love! It’s more than enough!
I highly suggest you surround yourself with a great team. And remember, the more composed and positive you are, the more so are those around you. You all help each other stay afloat, which in turn helps your child! If you have a bad therapist, ask for another one. If your family isn’t meeting your expectations, sit down and have a talk to them. Or simply hang up on them if they call you with unwarranted advice. Works like a charm each time! But, always remember to use all the help you can get and to always express your gratitude!
Over the years, I have been told by countless therapists and professionals that often, siblings of special needs children naturally become empathetic humans. I have been told by many parents, on the contrary, that some of their children are actually quite ashamed of their special needs siblings and it hurts them to be around them in the home or in public. My heart aches for those kids and those parents because my experience has been the complete contrary.
I am so blessed that my oldest son (who is neuro-typical), loves his special needs brother as he would love any other sibling. He recognizes his shortcomings but never dwells on them. He plays and fights with him like he would with any other sibling, although he is verbal and his brother is not. I do believe that a lot of the progress my son on the spectrum has made is due to this bond between him and his older brother. There is a very deep connection between the two of them which helps spark his social abilities.
As parents, we can pray that we have children that fall into the naturally empathetic category. However, many of us aren’t that fortunate. The battle of having a special needs child becomes two-fold in some cases. It is not only about how to best care for the autistic child. But also, how do we protect the neuro-typical siblings and respond to their valid emotions? I think my older son is the way he is because I am extremely lucky. However, I do think there are other factors at play and I have some control over their relationship:
1) I really do take my ASD son out everywhere we go as a family (my entire blog is evidence). Even if he tantrums. Even if he stims in public. The fact that my older son sees him exposed to the world must take away from the shame he would otherwise feel.
2) I have the older son participate in the therapy sessions. I deliberately make him feel responsible for causing positive changes in his younger brother. I even have him act as a therapist when the therapist isn’t there. He has a natural inclination to nurture so I make sure to fuel that trait in him as much as I can, which will only benefit them both into adulthood.
3) Always remember that your neuro-typical child(ren) need(s) as much attention as the special needs sibling. Love them as much. Love them together. Do things together. Someone once told me it’s best to separate my children so my older son can thrive. While there may be some truth behind the sentiment, and the advice came from a very good and caring place, it was a dagger to my heart. Every parents dream is to have children who get along. And this advice was going completely contrary to parental instinct. The relationship between my sons brings me extreme pride and I find it to be one of the crowning achievements of my life!
I highly recommend every parent sticks with their gut when raising their children. We all know best what works and what doesn’t. We are all probably, through survival instinct, more committed to our children than the average parent! None of us are doing our job wrong. But if from an early age you see your neuro-typical child withdraws from your special needs child, try to take care of the situation as soon as you can. Because G-d willing, they’ll be in this world together long after we are gone!
Below are some videos that show the bond between my boys that are truly heart-warming. They serve to show that no diagnosis can take away the innate love that exists between siblings! So even if you think your child is ashamed, it by no means indicative of his/her unconditional love for their special needs brother or sister!
We were taking a short flight from New York to Toronto to visit my sister the day I was escorted off the airplane by the police. My second son was around two and a half years old and just recently diagnosed. My husband and I hadn't told anyone yet. We were in the "let's hold off on this and see how fast he improves" phase. On the flight, he was extremely antsy and curious. He wouldn't sit still. He wouldn't put on his seatbelt. He kept playing with the buttons on top and moving the shades up and down. A flight attendant kept addressing me to put on his seatbelt and I told her he won't let. She then said to have him sit on my lap facing me. Another thing I couldn't get him to do. For an hour and a half...the lady kept coming up to me with no mercy commanding me to close his seat belt. In the most nasty way she could. I was visibly very distraught and shaken and I guess my husband realized that tears were building up in my eyes.
It was he who broke first. He started yelling at the flight attendant and saying "Ma'am...my wife is doing nothing wrong. Our son won't sit still. What do you suggest we do?" And the lady starting fuming. She called up another flight attendant to intervene. Once the other woman approached us, who had a soft and kind demeanor, it was now my turn to let loose. I started relaying the entire story of the flight and how nasty the other flight attendant had been. I turned around to ask the family sitting behind me to confirm my details about the woman. And the man said "Sorry miss. We were sitting here the whole time. It is not the flight attendant's fault you can't control your child. We have been controlling our children the whole flight." It was then that tears started streaming down my face and I immediately rebutted "are your children autistic, sir?" The man's face fell and he quickly apologized, letting us know he had no idea! I continued my case with the woman who was called over to mediate the situation. In the depths of my despair, I dropped the "c" bomb to describe as best I could what the other flight attendant was. I guess that's not allowed on airplanes. Next thing I know, the flight landed and I was being escorted off the airplane by like Canadian national security as if I was a uni-bomber.
My family and I walked to the gate and were met by a few policemen. My mother was sitting rows behind us on the flight. When she saw us in police custody she asked "Talia, what's happened?" I explained to her in our native tongue and then she told me "Just tell them your son has autism so they don't give you a harder time." And that's the very moment I told my mother. "Mom, he DOES have autism." And that's the very moment I had to explain the same thing to three strange men dressed in uniform. I was surprised how sympathetic they were. I told them there was no other word I could think of to describe the woman. They nodded in agreement. And that's when I learned something I never knew before. The police officer told me "you know, in the future, just let the airlines know that you are traveling with an autistic child. They'll be accommodating."
A few months later, my son started attending a center-based program (see The Services). The first few weeks we had several meetings with the school's social worker. She was curious about what our struggles were. I explained my new fear of going on airplanes, thinking that every experience would be as horrendous as our most recent one. She told me to come to her office where she handed me a couple pages which gave pointers on how to keep your child entertained on a flight. It was like the Bible of traveling with special needs children. Every bullet listed on that page worked like a miracle. It mentioned that we should buy NEW toys for the flight and open them on board to maintain our children's interest. It mentioned to have a lot of snacks on the flight to keep them full. Perhaps even bring a car seat on the flight because some children like the sensation of being snug (although we never had to go to these lengths). It said to bring headphones in case your child is sensitive to sound (which until this day we have not had to do). It was probably the single most helpful advice we have received in all these years.
Now that we were armed with the tools necessary to go on airplanes again, we were ready to plan our trip to Disney World. One of my friends who was an expert in all things Disney gave me the 411. I decided to tell her in confidence that I was a bit more nervous because my child was on the spectrum. And to my surprise, she answered "Talia, so is my sister. I know a bit about what you're going through. Disney is amazing with special needs. You can call them in advance and get a pass to avoid waiting on lines." And this is how I learned that A LOT of theme parks and museums offer this perk. It was by far and away the best thing to come out of the diagnosis! Not waiting on lines! This was huge! Instead, we just had to set a time in advice to go to a ride so we didn't have to wait in place (autistic children often like to move). And to my understanding, most of these parks don't even ask for a doctor's note, they trust your word. Now, to all those parents of typically developing children, I'd be weary to use this excuse to get these benefits. If you guys exploit this perk, you should just know that G-d is watching. Do not take your typical children for granted and do not try and use this huge benefit that us parents of special needs receive! And to all the parents of special needs, I hope my experiences will make your future travels as easy as mine have become!
Not getting his scheduled vaccines. Not eating whatever I wanted during pregnancy. Not giving up breast feeding after two weeks. No. I don't regret any of these. Nor do I think there's a cause and effect relationship between these and autism. There's no medical evidence about vaccines. And even if there is something behind it...which I can't really deny parents who swear they noticed regression after certain vaccines...I still prefer a child who is autistic and alive to a child who has a disease. Other moms have mentioned that if enough children are vaccinated, the threat of disease drops significantly. I respect everyone's decision regarding this. It's a very personal matter. But like other moms, I have never regretted my decisions in the past.
Except for my fear. I regret having fear. I regret having it cloud my vision and focus. The only real evidence out there for autism is that the earlier you intervene with therapy, the better it is for your child. I remember always showing therapists and professionals all the video clips of the things my one year old was able to do. All the things that looked like typical behavior. Even social. And across the board, they would all tell me "Don't worry. This is not autism." If only one of those people told me "yes, autism can look like this also", I would have opened the door to services much sooner. Perhaps even a year earlier which may have been critical for his development. But I was scared of a diagnosis. I didn't know about the services. So I wanted to paint the best picture I could have painted of my son.
In retrospect, I would have shown them every video of the things that got me suspicious. I would have really pushed them harder for the diagnosis. I thought I was being my son's defense attorney against people who wanted to give him a life sentence. If only I knew then what I know now. I should only hope that these words stick with you moms that have a feeling in your gut but are suppressing it out of fear. I don't want you all to go into a frenzy and think that your children are all on the spectrum if they have the slightest delay. Absolutely not. Your poor pediatricians are gonna put me on their hit list! But those of you who have a weird feeling....you know who you are...just trust your gut! And take advantage of the resources you have available!
This is not a strong suit for me. I believe strongly in science. When I hear about diets and homeopathic ways to deal with a medical issue, I am a true skeptic. There is no scientific evidence that supports any alternative therapy besides ABA Therapy (see The Services) for autism. But when you are cornered with no choice, and you are not seeing the improvement you'd like to see....you gotta explore your alternative avenues! As one mother said to me "I'll have tried everything before I die. I will never give up." I wish I had the will of some of these incredible mothers. I have tried a few of these options below, but only the ones that require little to no effort on my end....because at least that way, I won't be gambling my time and energy only to fail. Yes, this is indeed a very negative attitude. But I'd rather maintain my moderate levels of sanity. And there are many moms who swear by many of the following methods:
1) Essential Oils: Yeah, this is basically a load of crap in my eyes. But every mother has an experience of their own. From what I understand, some companies manufacture essential oils that are very diluted. It's important that you stick with the brands that make a more potent product. These oils can be rubbed on the sole of the foot, the spine, ingested orally, put on the back of the neck and so on. Contact any essential oil broker for more information. My sister-in-law actually works for a company and was able to tell me about some products that never worked for my son...but I have heard testimonials first hand from other mothers that it has worked for their children. Please feel free to send me an email if you have further questions about this.
2) Hemp Oil/CBD Oil/Medical Marijuana: I have been in an autism support group on facebook for a couple of years. And I have always heard stories about these oils that are extracted from marijuana plants that cause no harm and require no medical prescription. I never ordered them until we went on a trip to California, the capital of weed! I purchased hemp oil from a vendor on the boardwalk who told me to have my son take a drop orally per day. I paid about $48 dollars for a very small bottle that had a dropper...and since the day I started giving it to him, my son has started consistently using functional speech. Before he would only label when prompted...but now he is using words to get things he needs that are out of his sight. He even uses some verbs to express himself. To me, it was clear as day! I mean, it was the summer, and he had recently learned to swim, and he did have a shorter day in school...all of which could have contributed to this awakening....but the correlation was too distinct. It was the day we started the oil that we saw the change. And my son's progress always comes with regression...for every two steps forward, there is always a step back. But he has been consistently improving for the past few months. And he is now almost six years old. It is worth a try! You can order bottles on www.cwhemp.com. But remember, what works for one parent doesn't work for all. Also, I have read numerous articles that have suggested that medical marijuana (athough the government in the US hasn't funded enough studies to prove it) has worked wonders on behavioral and non-verbal children. There was a specific case in Israel (which has invested heavily in studies) where a non-verbal 12 year old started speaking upon receiving medical marijuana. In America, I believe you can get a prescription for epilepsy...it's only a matter of time before we can get it for Autism Spectrum Disorder! (Warning: Check with your doctor before usage..if your child is taking other medications, Hemp Oil may be hazardous) After a couple months, we decided to stop using the product to see if he can retain his newly developed skills. And he did…so we no longer need the oils (for now…).
3) Casein Free and Gluten Free Diets: Something about eliminating all dairy and all gluten. Which to me, sounds pretty daunting. Google more about this and ask other mothers because lots have sworn by this nutritional restriction. I just don't know enough about this to recommend to anyone.
Now on top of these alternative approaches to help tackle autism, there are also things therapists suggest. Physical movement is important for our children. It makes their brain work clearer. Enroll your child in a swimming class (you will be surprised by their capability), preferably with an instructor trained with special needs children. Take them to a sensory gym. Go to the playground. Invest in a jumping castle. Anything to get them to move! Some teachers notice an improvement in focus after a session with an occupational or physical therapist! It is well worth the try!
Thank G-d we are living in a world where autism and special needs are so prevalent that writers are now scripting high-rated television shows and movies around main characters with developmental disabilities. And some of them are brilliantly produced, directed and acted! Here are a few that come to mind that I have seen throughout the years:
1) Rainman: This is Autism101 and a must watch for all! A coming of age story about a young adult who is having financial problems and learns his recently deceased father left his entire inheritance to an autistic brother he never knew he had. It shows the evolution of his character through a cross-country road trip with his brother Raymond who he starts to remember having called "Rainman" when he was a child. Tom Cruise plays the younger brother to perfection and Dustin Hoffman....it's as if you are watching a documentary. His performance is based on a real life person who in addition to having autism, has savant abilities. I am sure most people are familiar with this Oscar winning movie...but if not....put it on your instant queue to watch immediately!
2) A Brilliant Young Mind (Original Title: X & Y): This is an independent film made in England that I accidentally stumbled upon. I was intrigued by the subject line of the movie which hinted that it is about a young boy with autism...and sure enough...ten minutes into the film we realize it is indeed about the coming of age of a high-functioning autistic savant who is highly skilled in mathematics. I loved every performance in this movie. The main character is a beautiful boy who just really seems quiet and to himself....nothing you'd really expect as autistic. But you see many more characters on the spectrum when he takes a trip to Japan with his peers for a math competition. And you see the range of the spectrum through these other brilliant children. It is a very naturally done movie and you see how the main character blossoms when immersed in the Japanese culture. It is one of my favorite movies ever. Really stayed with me.
3) Atypical: Finally a comedy about autism spectrum disorder! Well...a dramedy really....but good enough. This is a Netflix series about an adolescent boy with autism spectrum disorder (just your typical socially awkward high school student) and his day to day life. It shows how his disability affects his family and his relationships. It is a slow and brilliant build up to the season finale. Characters you hate you later learn to appreciate. It is the truest thing I've seen on television about how autism effects everyone in a family and how much we rely on therapists, who are just ordinary people with ordinary lives and ordinary problems, who we perceive as G-d. You will laugh out loud and cry every episode. Brilliant brilliant brilliant!
4) The Good Doctor: Cheesefest galore. Cliche times a billion. But a compelling lead actor who plays the role of a high-functioning autistic man. I actually see a lot of my son in his portrayal of a quirky and lovable young adult. I honestly just watch for his performance! Airs on ABC every week and at one point was its highest rated show its premier season.
5) Life, Animated: A documentary about the child of a former Wall Street Journal journalist who had regressive autism and started speaking again at age seven. A fascinating coming of age story about a dad's mission to get his child to speak through all things Disney. And a young adult who has to learn how to live independently. The take-away line comes from the mother who states "who decides what a meaningful life is?"
6) Julia on Sesame Street: Julia is a four-year-old girl with autism who was introduced as an official character back in 2017. This is a beautifully developed character and if you can’t catch an episode, be sure to youtube anything you can find on her. And make sure to watch it with your children! And if you are a parent with a special needs child, definitely watch it with the affected child and his/her sibling(s). Julia raises tons of awareness, especially to this younger children who is far more exposed to autism than we ever were. It’s a great learning opportunity for children and adults alike! And it was the best way for me to explain what autism is to my neuro-typical child. It took a lot of weight off the word and I just simply asked him (who was 6 at the time) “who does Julia remind you of?” he smiled and named his brother.
The one problem I've heard from other parents of children on the spectrum is that there aren't really any shows out there that depict their severely impacted child. And that what's presented in the media is often sugar-coated. Which is understandable as heavy subject matters are not always a ratings draw. But hopefully one day, writers will begin to crack the surface and write stories that relate to the wider range of people on the spectrum.
There is so much more literature and material about autism I haven't got around to reading or watching. But the ones mentioned above are a few you should definitely give a try. Please add any film, book, tv show, or blog that you find relatable in the comments section below!
For some, having a child with special needs may be a blessing in disguise. It makes you the parent you never thought you can be. You have to rise to the challenge every minute of every day. You have to develop the patience you never had. You learn that your mission in life is to make your child the best they can be....not the best! And you carry over this parenting ideology over to your other kids...which is exactly what all mothers and fathers should aim for in raising their children! To get out their full potential by adulthood....and always encourage them to do better than themselves! Being "the best" has no real value. But having your child achieve his or her goals is one of the most gratifying things for both child and parent alike!
Also in my experience, my son is extremely happy go lucky. He lives in his own world, which is a wonderful place to live, devoid of life's day to day worries. And watching him smile every minute of the day brings an ease to our souls. Because nothing in life is worse than witnessing your child suffer in any way. It is every parent's underlying mission to make sure their child grow up to be happy adults! And we have already reached that goal!
Parenting children with special needs can also be very isolating. While all your child's peers are developing at a typical pace, having playdates, learning to read and write, having meaningful conversations, playing sports, eventually driving and so on....all these milestones are opportunities for parents to bond with one another. But when your child is behind and their development is at snail's pace, you kind of have no one to relate to than perhaps other parents of children with special needs who all have problems of their own.
Also, parenting children with special needs can cause massive strain on a marriage. It was one of my very first worries when I was suspecting my son has autism. I remember talking to a relative who is a life coach, telling her about this underlying fear. My husband kept dismissing the idea and kind of belittling my thoughts. Part of this had to do with him not accepting a flaw in his own child, but a big part had to do with thinking I'm neurotic. And I'll never forget when she told me "Talia, you are doing everything correct. You are focused and going through every step the right way. You just have to make sure that you stay on the same page as your husband always. No one else matters except you two." And so I went home that evening, told him what she said, and since that conversation, we both communicate very effectively with one another about our fears and our pride over our son. One of the very first things he said to me is "You know what, even if he has autism, I don't care! It's just a word that was created by an industry of therapists and teachers and doctors. It means nothing about my child." And just that statement gave me so much support because I realized that he was not shattered by the idea of a special needs child. I knew that he was ok. And when he is ok...I am ok. When he's in a bad mood...I'm in a bad mood. That is what marriage is!
And the partner I chose has come through in every way possible through our journey! We compliment each other beautifully. By nature he is passive and I'm neurotic. But as parents, we are completely different. He steps up to the plate with discipline (which is very important for special needs children) and I raise my game with patience and acceptance. We both unconditionally love our autistic son. Watching him as a parent makes me love him tenfolds more. Sure, there are times where I wouldn't mind choking him to death. But 99 percent of the time, I have pure admiration for him. The way he plays with my child and gets the best out of him. His strength. His dedication. His hope. His determination. His efforts. His understanding. His involvement. I am proud to be married to such a man and to have a great teammate on board! And I should only hope he feels the same way as me!
On the flip side, there are several men who are in complete denial in the beginning. It takes them a long time to come around...and I can't blame them. Usually, they are the parent that spends less time with the child so they can't see what a mother sees (in some cases, the reverse is true). And this can cause major conflict. Or just not agreeing on what is best for a child can cause a big wedge in a marriage. To all those single parents out their raising special needs children on their own...really, bravo to you! You are the biggest heroes on the planet!
Some people may wonder how I remain so calm and collected when I have a nonverbal child on the autism spectrum. Especially considering that I am the world's most anxious and negative person. In all honesty, it is through the wise words of some mothers and teachers that I have found some peace of mind. These are some of the lines embedded in my brain that help me get through the day:
"Autism is like an electric fuse that keeps going in and out. You'll see sparks of capability only to be followed by moments of zoning out. But when they are with you, they are completely with you."
"Think of their brains as a messy closet. They don't always have access to their words but they are in there."
"It's like speaking another language. It doesn't come naturally to them."
"Autism brings out the goodness in everyone surrounding the person affected. You grow empathetic and patient and kind. These children are here to make you better. They have value in this world."
"Every child comes with their challenges. My kid is a bully. Every day I have to work on him and make sure he behaves."
For those who are Jewish..."The biggest mitzvah on Yom Kippur is to not talk. Because it's the most challenging thing to do, even more than not eating. It means you are completely pure because you are avoiding Lashon Hara. Which is what a non-verbal child on the spectrum naturally does. They are true Tzadiks."
"Honestly, I worry about the future of all my children. Getting a good job, being happy, staying healthy, getting into a good college, having friends and getting married run in the back of my mind for all of them. I don't know which ones will go on to have success."
"Sometimes, my autistic child is the easy one. He/she is more used to routine and doesn't have to be told to brush their teeth in the morning or get out of bed."
"There's a saying: 'If we all threw our problems in a pile and saw everyone else's, we'd grab ours back." I couldn't agree more!
"There is a theory that autism may be a form of human evolution. The numbers are rising at an exponential rate. This might just be nature's way of saying human's complex emotions are not always great for the planet earth. Perhaps a world filled with humans on the spectrum will result in less wars and less hate. Maybe humans have done too much harm the planet earth with their complex brains."
"The sooner you accept life's challenges, the easier your life will be."
For every positive and reinforcing comment, there is about ten "idiotic and obnoxious" ones. But these are actually meant to be sweet. As parents of children with special needs, we all need to be a bit more thick skinned and understand that some of the "dumbest" comments are coming from a place of love and concern, and are not meant in any way to be condescending. We need to drop our armor and our defense mechanisms and learn to embrace these comments as much as we embrace the wise ones. Some of the myths out there:
"Is your child a genius? I understand autistic kids are savants like Rainman." Um, absolutely not. Yes, there is a percentage, but certainly not all or anywhere close to all have savant skills.
"He looks completely normal. I can't tell." That's because you're not his/her mom.
"Don't worry, he'll outgrow it." He/she may. He/she may not.
"He just doesn't want to talk." Nope. He/she just can't.
"He's very smart." No one ever said he wasn't. There's just a communication barrier.
"He'll just start talking out of no where." Not always true. If you're lucky, maybe? I'm still waiting.
"You're not disciplining him. That's why he behaves this way." Ok, you try to discipline him.
These comments are things I would probably say to a friend if I heard their child has special needs not knowing any better. Personally, I have never found any comment offensive. Perhaps only a few times when I felt that someone thought I was making things up or was just being "negative." I wasn't offended by the comment as much as I was about the attitude.
I think that the underlying problem with these comments is that they seem to be devaluing our day-to-day struggles. "It's no big deal" doesn't sit well when "it is a very big deal" and a very big challenge! And this bruises our egos. It takes away our heroic efforts and all our extra credit as mothers and fathers! And that is simply not fair! But in all honesty, I have been moved by each comment and all the advice that comes my way! I embrace all the love and encouragement. Just be mindful that some are more sensitive than others...as they have a right to be. So just think next time you drop one of these lines!
I can't begin to tell you how frustrating it is to learn your child has autism and then have to navigate the world alone to find the appropriate help. A lot of the information I've gathered throughout the years have come from mothers and therapists.
Right around my son's first birthday, I learned through the mommy grapevine that there was something called a feeding therapist. It was at that point I noticed my son wasn't eating properly and was chronically constipated. I had applied for a feeding therapist through early intervention (some school districts offer this service between birth and 3 years of age) only to get denied. The excuse: my son was physically thriving on the scale and that without a note from the doctor saying he is malnourished, I would have to wait till 18 months before I could re-apply for early intervention and receive services through another avenue, perhaps a speech delay. And if he was eligible for speech and was still displaying poor feeding, I would be able to get a speech and feeding therapist in one. And so I did as I was told. And ultimately received the speech and feeding therapist through early intervention.
So for about a year and a half he received speech and feeding through early intervention, but the improvements were not nearly enough. Which made me more suspicious about my son's delays. I kept asking the speech and feeding therapist if she thought he had autism (which she legally is not allowed to hint at nor diagnose), and after seeing my pain and suffering, she finally told me to go online and take a preliminary questionnaire which would tell me if he was at risk. She also reiterated that "Autism is just a label to get help. A lot of people get the label and have it removed years later when their child is mainstreamed." So she imbedded both the idea of hope and practicality in my soul. And I am forever grateful for her honesty and directness. Also, after pressing my service coordinator provided in early intervention, I was told that a diagnosis will get me up to 20 hour a week of one-on-one therapy at home instead of just 2 hours a week. Or better yet, if my child was born early enough in the calendar year, he could have gone straight to a center-based school which has kids on the spectrum, kids with just general global delays, neuro-typical kids (See to Tell or Not to Tell), and most importantly, special ed teachers and therapists. And the last person to steer me in the right direction was a dear friend who I inadvertently cornered. She told me that her son received a diagnosis in very early childhood (I had zero suspicion..just thought he had minor delays in language) only to have it removed a year later. Either it was the wrong call, or the intervention helped tremendously. She told me that a lot of the diagnosis came from her reports of his behavior, not just the psychologist's evaluation provided by early intervention. So I learned through these three people that a diagnosis doesn't just come out of no where, but comes when you, as a parent, chases it (unless the symptoms are very severe and a pediatrician catches it right away). Also, remember that pediatricians are not seeing the full picture in a ten minute doctor's visit. It is your job to press them for information and they will let you know about all the programs offered in your district. They can guide you through the right path to receive a diagnosis (from either a developmental pediatrician, a neurologist, or a psychologist) and let you know more about services available.
So moving forward, once you've received a diagnosis and your brain starts racing about the future, just knowing about all the services that are available through life can help ease your anxieties. Below I've mentioned the ones I've learned about in the past six years of this journey:
1) OPWDD (Office for People With Developmental Disabilities): This is government aid provided in the case of moderate to severe disability for as long as you should need it. So far, I sent my application but am still waiting for a response (which takes a long time to receive). The sooner you get the ball rolling on applying, the higher your chance is to receive help as your child may outgrow symptoms and not be eligible for aid in the future. If you have medicaid, you will have access to more services for your child. Regardless, all children receive medicaid once they are 18 years old (from what I understand). For those without medicaid coverage, no need to worry, they still offer reimbursement programs up to $1000/year for say karate classes, swim lessons, art classes, and other programs (not speech, ot or pt though). Remember to keep your receipts! You also will qualify for in-home respite, which is basically a babysitter through an agency’s staff or someone you hire and put on their payroll. Which is a great perk because some agencies allow you to list family members as employees who are already familiar with your child and that you trust. For every agency, this works differently. You will receive a list of agencies to call and ask all the questions you need. You can also get school break respite which means you can send your child to like a one week camp mid year, and also some agencies have summer camps (some even overnight). The list of services provided is endless. And for all special needs children and adults, not strictly for autism. All developmental delays are included! And also, you can rest easy because once your child turns 18, he/she is eligible for so much more services (think housing, employment, etc.). So whenever you’re feeling nervous or down, just remember what this wonderful country offers its citizens!
2) ABA services: This is the therapy offered to children with behavioral issues and autism. It is the only thing medically proven to help children on the spectrum. It stands for Applied Behavioral Analysis and is offered through personal health insurance (google any ABA agency in your area and then call them to ask them whether they accept your insurance). Depending on your plan, you can get up to 20 hours a week of one-on-one ABA therapy at your home after your child's school day (which is only offered by district until your child is 3 years old....so then you'll have to transition to Health Insurance to continue receiving at home services). I have to be honest. In the beginning, I was very nervous about the idea of always having someone in my home. It kind of robs me of my freedom to be stuck in the house at all times during therapy. But I soon found it liberating and non-intrusive. The therapists camouflage into my household. It's as if they are part of the family. My initial aversion turned into complete acceptance.
3) Early Intervention, CPSE, CSE: In my district, these are the programs that offer therapy through the district as mentioned above So far, I am familiar with Early Intervention (birth to 3 years old), CPSE (3 to 5 years old), and CSE (elementary school). Each are run by different coordinators and a psychological evaluation can be performed for free at any point you request in any one of these three phases, as long as it's performed only once within the time allotted. If you have any further questions, feel free to email me.
4) IEP, Self Contained Classes, Center Based Schools, Integrated Classes: IEPS are Individualized Education Programs designed particular for your special needs child or delayed child. This is something that you will change every year of your child's life and is a personalized blueprint for his/her teachers and therapists to follow through the school year and sometimes the summer. Self Contained Classes are classes which only contain children with delays or diagnoses. Center Based Schools, as I mentioned briefly above, are preschools (and perhaps elementary schools) that are privately run but paid for by district that are specialized for children with global delays and children with disabilities as well as typical children. These schools are so good that some parents pay a premium for their typical children to attend as the teachers are all specially trained. Integrated classes are offered in both Center Based Programs and public schools. They are classes that contain both regular ed students and high functioning special ed students. The regular ed students serve as a models for those kids who fall slightly behind academically or behaviorally. Never ever let the size of the class discourage you. Think of it as a win win situation. If your child ends up being in a class with only 6 students, 1 teacher, and 3 assistants, he/she is getting the best of the best services and the most attention...which will yield the best results. Even if your child is moved around from one class size to another throughout the years, don't ever let this be a measure of your child's future success. Just accept it and be as grateful as you can be! Otherwise, you'll just unnecessarily torture yourself! Thank G-d you don't live in a third world country and take advantage of every resource!
5) SSI (Supplemental Security Income): I was contacted by my health insurance about this particular perk. Depending on you annual income, your special needs child may be eligible for a monthly salary from the government to cover his/her present and future needs. If your income is low enough, you will most certainly be able to receive money to aid your child in any way you choose.
6) Speech, Special Ed, OT, PT, Feeding and so on: These are all the therapies offered that I know of. Special Ed is when your child is in a regular ed class and has someone who comes in about an hour a day to guide your child. OT stands for Occupational Therapy which works on fine motor skills (I've been told this is a key therapy for children on the spectrum and doesn't get enough credit for it's value). PT stands for Physical Therapy for a child who has low muscle tone and poor coordination. Feeding is when your child has problems eating (there are even some schools which just focus on this particular struggle...ask your pediatricians or any therapist you know for more information).
I'm sure there are many more services I am missing. I am only six years into this world. My knowledge is limited. And not entirely accurate. This is all from my personal experience. In other states and counties, services may be entirely different than they are in New York and Nassau county (which I've been told are among the best). Remember to always question whoever you can because, as I've learned the hard way, everyone has a little piece of the puzzle! Feel free to email me any question or concern. Your information will remain completely confidential. You can make an anonymous account as well. I am pleased to help in any way I can...as certain mothers have for me in times of need! We'd all be no where without each other as a resource! I thank every mother who has fought for these services we so easily receive today. Without their lonely struggle at a time when autism wasn't so prevalent in the general population, we would be no where! I thank them from the very bottom of my heart for laying the bricks for the rest of us!!!
The hardest part of chasing an autism diagnosis or sharing an autism diagnosis is the stigma that is associated with the word. In most cases, Autism Spectrum Disorder doesn't really look like what you imagine it to be. It doesn't always look like "Rainman". It's not always severe. More often than not, the shades of autism are pretty subtle. See When You've Met One Person With Autism, You've Met One Person With Autism. Because the spectrum ranges so much, I think it is key for our future to try and de-stigmatize this word to the best of our ability so people can be more understanding, empathetic, less afraid, and more able to relate and bond with children and adults on the spectrum. In a way, just to lift the barrier that exists between neuro-typicals (the scientific phrase used to describe people who fall into a "normal" range of behavior) and people with Autism Spectrum Disorder (ASD). Because sometimes, many characteristics of both types of people overlap and there's really not such a notable difference between a shy and timid neurotypical versus a person with high-functioning autism. By lifting the stigma, we will be able to bridge the gap between humanity.
Years ago, to be diagnosed with ADHD was as isolating as being diagnosed with ASD. But today, how many times a day do you hear from someone "whatever, I definitely have ADHD"? I hope in twenty years time, the weight of the term "Autism Spectrum Disorder" becomes as light as the term "Attention Deficit Hyperactivity Disorder".
The biggest challenge for me with sharing my son's diagnosis was my fear of "outing" other parents who have chosen (and I respect all parents who have) to keep the diagnosis to themselves. Because as I mentioned earlier, Autism doesn't have a distinct look like many other disabilities do. Some people on the spectrum can camouflage into the general population as just shy and quirky. So a lot of parents rightfully keep the diagnosis to themselves because they don't want to brand their child and ruin opportunities in their future. Their child may outgrow symptoms and significantly improve over time, as many children do.
However, my fear of "outing" those parents who remain silent is overrun by my burning need to educate those who don't know what autism is. Those parents deserve to know the truth about autism and need to know how to get their child all the help that is available in their district and state.
I also internally struggled with the idea of sharing information on my blog. I didn't want to seem like I was exploiting my son's diagnosis in any way. Nor was it easy for me to be so public about it, because it puts him under public scrutiny. But I decided that it's for the general good and I'm almost certain that in his own little world, he doesn't mind...so I went with my gut and chose to publish my thoughts.
I can't tell you how many times I've been told by people I hold very dear to my heart that "there is no point to tell anyone." But in my son's case and as a mother with intuition, I know that there most certainly is a point. Besides my need to take G-d's challenge and turn it into positive energy by helping others, I also want everyone to treat my son as though he is their own. And once I opened the doors to tell people about his diagnosis, sure, they looked at him slightly differently, but they were also much more aware of the condition. The responsibility was no longer solely on my (and my husband's) shoulders. There is now always subconsciously an extra eye on him by the pool, or in a playground, or anywhere that poses danger to him.
And it's not only that I wanted to build a safety net for him. I always wanted to build sympathy and compassion and love. I found that once I told people, they started embracing my son and loving him more than before. Rather than just look at him suspiciously and wonder why he appears "slightly off", they had a deeper understanding and were now more charmed than alarmed. They got to see him through the lens of a mother's and father's eyes too. Not only is this the case with adults. When I tell children that my son is delayed and they should approach him a certain way, they are all quick to adjust their behavior and to show him affection. If we teach our kids as early as we can to embrace differences, the future of humanity looks very bright...and my worries, or should I say those of every parent of special needs children, become significantly less.
Nothing is truer than this popular saying. No two children on the spectrum behave the same. They all come with their own personal strengths and weaknesses, like all humans. Throughout the course of history, there have always been quirky people. In third world countries, these people most likely never received an official label. But in America, the land of opportunity, you must receive a diagnosis of some sort to receive the best help you can get...whether it's provided by the government or through health insurance. So you must take advantage and chase a diagnosis. This free help is provided to increase opportunity for our children's futures.
Do I believe it is fair to have one word to define 1 in 68 children who range so much in ability? Absolutely not. Till this day, I think there should be more than one word. For one, more severe children need more services. And it's not fair for those who are on the border of the spectrum to receive the same amount of therapy. And two, no parent should ever have to suffer thinking their capable-enough child is unusual in any way. There used to be different words to express the severity of autism. Pervasive Developmental Disorder (PDD) and Asbergers are both high functioning Autism (think every other man in the world and every other unique person you meet) but are no longer diagnosed as such today. As of 2015, all severities are being lumped under the same umbrella of Autism Spectrum Disorder.
When I first learned of my son's diagnosis, professionals were quick to tell me "Einstein and Steve Jobs are on the spectrum"...and I kept thinking "and this is a bad place to be?" These two men arguably achieved more success than any human in history. The therapists used these examples to de-stigmatize ASD, yet I honestly believe that people who will go on and live independent and successful lives shouldn't receive this diagnosis. Not to say ASD shouldn't be de-stigmatized, but it shouldn't be overly diagnosed! There is a fine line between ASD and neuro-typical, and a parent should always trust their instinct, not their fear, on whether they believe their child needs a label. And remember, no one but you and your spouse needs to know this about your child if he/she is indeed on the spectrum. It is a personal choice and there is nothing cowardly about keeping it private. Letting people know too soon may cast a shadow on your child's life forever, as unfortunately, the word is still a stigma (see To Tell or Not To Tell). And you may see as your child grows older that they will shed their old and strange habits. I respect both those parents who keep the secret and those who share. But no parent should ever be ashamed of their child!
Nothing in this world is worse than fear. It can conquer your life and cripple your judgement. The year leading up to the diagnosis was one of the worst of my life. Instead of celebrating and enjoying my beautiful toddler, I became obsessed with this label that is essentially a social construct created by human beings. I had lost over 10 pounds in as little as two months without trying. I couldn't breathe for one minute without thinking "does he or does he not have autism." Even my four year old son began to ask why I was so sad. I thought of the word as a life sentence of things my child would never be able to do: go to camp with neuro-typical children; drive a car; tell me he's not feeling well; dress himself; go to the bathroom independently; shower independently; go to school with neur-typical children; swim; talk; get married; have friends; get a job and so on. Till today, I am still uncertain about the future. But i do know all that he has accomplished that I never thought he would. And he is only five years old. And I credit both G-d, therapy, and time for all these improvements.
On the flip side, every fear that I had in the beginning that has come true has shown me that the fear was greater than the reality...and that human's have a strong capacity to adapt to life's circmstances. We are all more resilient than we think. I can't believe I even uttered the words "I don't want this challenge." I can't remember what that moment felt like now that I am so far removed from that initial fear.
I was scared of the diagnosis up until the day I received it. It was within 10 minutes of assessing my son that the child psychologist nodded his head and confirmed my suspicion. I teared for a couple of minutes. He assured me that my son had social intent and that these children were usually the ones who grew up to have what we humans measure as success in life. I wiped my tears, accepted the diagnosis, talked to my husband in depth that night about all my fears, and then just got to work on finding him all the help in the world I could get.
The diagnosis set me in motion. It made me the mother I never thought I could be. And I slowly learned that no label can actually change my son. He is the same child I always loved and always will love. His strengths and weaknesses were the same before and after the diagnosis. Any challenge a human faces is just a matter of getting used to. I would be lying to everyone if I said that those worries I used to have still plague me today. Yes, they run in the back of my head occasionally. But it's no different than the worries I have for my neuro-typical son's future. We don't know anything about the trajectory of any person's life.
I started subconsciously turning negatives into positives. Instead of being sad to not carpool to an after school event, I felt relieved and free of this parental duty. Other parents' struggles and workload are not really less than mine. They are just less challenging. And it's ok, because life is full of challenges for everyone in some way or another. And this is my family's challenge. No one really prays to have a special needs child when they find out they're pregnant. But once G-d blesses you with one, you pray that all of humanity have souls as pure as those of special needs children. And to all you parents and all you therapists who help hours on end, G-d bless you! Take a minute and pat yourselves on the back. We are all heroes!
When people ask me "What was the first thing you noticed?"...I often find myself realizing there was no ONE thing I noticed. Autism Spectrum Disorder presents with a constellation of symptoms in early childhood. The big ones to look for are: little to no eye contact, little to no response to their name, and no pointing or following a point. But then again, your child may exhibit all of these symptoms and not be on the spectrum. Usually, a psychologist (who diagnosed my son at 30 months), neurologist or developmental pediatrician looks for a range of symptoms. They will evaluate your child and also heavily rely on the parents' observations. Some parents bluff and make their child look worse on purpose to get a diagnosis (which results in up to 20 hours of free therapy per week, depending on what state you live in). Some parents (such as myself), through a lack of knowledge, fear the diagnosis and may swipe symptoms under the rug.
My advice to all parents is to get a diagnose as early as possible as the first five years are the most formidable years of brain development. It is either an accurate diagnosis or not. Autism is no indication of who your child is, how much you love your child or what the trajectory of your child's life will be. It is just a word to get free help. The sooner you lose your fear of this word, the more appropriate help you will receive and the easier you make your life for your child and yourself. So trust your instinct, stop dodging or denying your fears, and don't listen to anyone (not your parents, not your in laws...only you, the parent who is with the child the most, will know when something doesn't seem right).
Remember, all professionals may not agree on a diagnosis. But it is to your advantage to go with the one who provides you with a label. Because that label can always be removed when they "outgrow" the symptoms or when the therapy is effective enough to get your child off the spectrum. And even if the label never gets removed, you as a parent know you are doing the ultimate best you can for your dear child. And always remember, 1 in 68 children are diagnosed with autism today. The numbers keep climbing. And I don't see 1 in 68 children in this world who are completely disabled. These are mostly high functioning kids who used to be called "quirky" or "nerdy." The label sounds worse than autism actually is in some cases. Of course there is a range in severity, and there is no indication from childhood about where your child will fall on this range as an adult. I am hopeful that within twenty years, Autism Spectrum Disorder will be the new ADHD. It will be a passing line people use to describe themselves (just think when your average inattentive teenager says "I have ADHD") without any negative connotation.
So here are all those first "weird things" I recall seeing in my son during his toddler years...most of which were extremely subtle in nature:
1) Honestly, there wasn't much I noticed that first year. Eye contact was there. Joint attention was there. Responding to his name was there. Dancing when he heard music was there. Playing peekaboo was there. Babbling was there. Below is a video of the first year of his life...where development was completely within range of "neurotypical." The only thing that struck me as both charming and unique was that he would line up toy cars at around nine months. When I was showing off this trait of his at dinner one night, my friend, who is a speech therapist, told me "um, Talia...that's a red flag." I replied "A red flag for what?" "For autism." She told me not to worry because a lot of children who aren't on the spectrum may do this as well. But the seed was planted with those words. From then on, I started scrutinizing my seemingly perfectly developing baby.
First Year of Development
Second Year Development
2) He started walking when he was 10 months old. Which was fantastic because my other son didn't achieve this milestone until he was 16 months. So I thought, "Yes! I'm in the clear of a physical delay...it's just a matter of time before he talks." But as soon as the walking started...he started running. And yes, children run. But something in my gut told me that he was just running too much. And without spacial understand or understanding when he was in harm's way. He would often run into kids on swings (a mother will understand if this is just typical toddler behavior or not). Something in my gut told me this wasn't normal. But I figured "He must have ADHD and not to worry, he is just a wild little boy as most boys are!"
3) Words started coming in around the year mark. But as soon as they came, they went. And inconsistently at that. And he wasn't using words to communicate. Nor was he labelling on demand. He would just sometimes sing the alphabet, or look at books and label what he saw. And the phrases would just come and go for a about a year. So to say that he had words and then regressed is not entirely true. He just never had full command of the vocabulary that was stored in his brain. So it became difficult when it was time to show my family a new skill (parents of typical children take this for granted) and I would ask him to say what I knew he had said the day before only to get no response. This really got me to start worrying....as it is one of the hallmarks of ASD. I also knew that my older son also had a speech delay, but his never made me think something was wrong.
4) He ate baby food just fine. Much better than my first born ever did. He would even mimic my words and say "delicious." But once the solids were introduced, he was no longer interested in ingesting food. From the period of 12 to 24 months, my boy only ate crushed tea biscuits on the floor, dirt he would find on the ground (a disorder called pica that is found in developmentally delayed children), nutri grain bars, and whole milk in a bottle. And a date loaf (yes, a date loaf) from Walbaums. He was an unusually picky eater, not like your average picky toddler (a mom will know the difference). This made him chronically constipated...another kind of red flag for me that something was off. Refer to The Services for more information.
5) He would eat pizza backwards. Like from the crust. Which yes, many children might do. But this was quirky. Eating is social. He had no awareness of how others were eating. He was self-directed (another big hallmark of autism) and would eat how he wanted to. He would also not hug me appropriately. He would just turn around and back up into me and have me hug him whenever I would pick him up from preschool. Now these aren't real red flags, but they were signs of quirkiness. He also had a phase where he would just turn back and look at a person in a funny way, kind of like the "what you talkin bout Willis?" face. Of course, we were utterly charmed by all these quirks. But they were quirks nonetheless.
6) He would laugh out of no where. And my older sister who was very attuned and informed about autism would always indirectly hint to me to change his diet and he might be having a reaction to food (which I always knew parents of children on the spectrum often change their diet to see if they find improvements in their behavior). And I would then google "laughing out of no where" and would be terrified by the stuff I read. This was another big one for me.
7) When he started preschool, I knew he wasn't ready. But there was no choice. He had no diagnosis. He just had a speech delay and autism was ruled out at the 18 months because he was social and would respond to his name and play peekaboo with his brother in front of the evaluator. All he had was speech/feeding therapy twice a week for one month before entering school. And I knew it would be an uphill battle. Once he started school....everything became infinitely obvious. He just was no where close to the other children developmentally. He was receptively and expressively delayed. He wouldn't follow directions. He wouldn't sit down to eat food. (Thank G-d though after two months here he started finally eating meals...one problem solved). It took him four months to detach from me. The transition from preferred to non preferred activities were horrendous. And I was told by the principal that he was "in his own world." Google that. And I remember having heard that about him often from my parents and in laws but never knowing that in today's world, that meant "autism".
8) He would look up at fans on ceilings. Like obsessively.
9) Humming to himself repetitively. Which in retrospect I learned is a "stim", a self stimulatory behavior present in many autistic children.
10) Inconsistent everything. Responding to his name. Eye contact. Following points. Pointing. Playing peekaboo. Being present.
11) Covering and tapping his ears whenever he was sensitive to a particular noise. This was a two week phase in the beginning and continues to come and go into the present day.
12) Stimming: you normally think of hand flapping when you think of autism. But stimming comes in various forms. And in my son's case, it started full force after the diagnosis. Whether it's vocal stimming, jumping up and down, staring at their hands, climbing up and down couches...these are all behaviors that interfere with learning and communication. And they occur when the children are over stimulated, in a new environment, excited, or simply just want to avoid the task at hand. And it often takes over their lives. Probably the biggest battle to date has been against his stim because it competes with learning and focus.