Why Therapy?!

My therapy team is AMAZING! I don't know how I would do life without them. In my other blogs I have mentioned most of my son's journey up to his school years. That is when things got a little tricky. I would have to pull him out of school for occupational therapy (which we did for 2 years, yes, it's that worth it) from his school day, and any other therapy would take a drive here and a drive there. Until I came across ABA (Applied Behavioral Analysis). The center in my city services any child with a behavioral disability (ADHD, ASD-Autism Spectrum Disorder, and the like). Every center is different with their criteria, but not all require a formal diagnosis (with a psychiatrist), some would need a screening from a school and a note from a doctor, some would need a full diagnosis for services. Check your local organization to see what the requirements are, and don't delay! While these services are amazing, their wait list can also be amazingly long. My son had to wait for services for a year, and by that time his diagnosis was changed. Thankfully, we were still moved along and not added to another list, or put at the back of the line, but only needed to fill out more paperwork.

Here's what I love about ABA:

1. They come to my house!!!! I cook dinner (sorry therapists, I know sometimes you come hungry, even when you don't say it), I do chores, I garden (depending on the season, ha!), I nap....I pretty much carry on with my day, except I do need to stay home (they can't be left alone in a house with a child-good policy).

2. I can tell them our problems (related to the child of course, although they are so amazing they always ask about our lives too, they really care!) and things that have come up that we haven't been able to tackle, and don't know how to help our child. I am always amazed at sometimes how simple the solutions are.

3. You are heard. I can't tell you how many times I got the wrong kind of parenting advice, the blame game, and the "Your son needs to make better choices" given to me over the years. They listen, and they seem to understand. They know we are trying our best, and they don't judge us for it.

4. They match your child to a specialist that has common interest or they think will be best suited for them. I know this isn't the case with all centers, but ours has done a great job. If you are not happy with your therapist or how they approach or handle your child speak up. You have the say who influences and helps them, and if you aren't happy, then tell them. Chances are they will be happy you did and try to accommodate you.

5. They are there for you in crisis. I have been able to call and ask for help or email them and be able to have advice right away (this part of trust takes time, and not all specialists will give their information to you-for good reason, and some will never, so don't assume this will happen). The center will try to help and they will offer guidance when you don't know what to do.

6. It's not a cookie-cutter program, it's fit to your child's needs, and goals you and the therapist will come up with.

We have had the same therapist for our son for the last 2 years. They have been amazing, and I know my son would not have progressed as much as he would have if not for the help we received. Please note, that not all centers are created equal. Each one will have different expectations, different therapists, and different policies, but I hope they will be a help to you and your child.

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Over Stimulation-Deck the Halls and Climb the Walls

Around the corner comes my favorite holiday, and possibly the hardest time of the year (still amazing, still beautiful and still full of wonderful things!). That being said, it's one of the most difficult times of the year for kids with sensory processing disorder (SPD). It's exciting, full of colorful decorations, presents, fancy dinners, snow (let's cross our fingers Northwest!) and many activities. This can be exhausting to just the average person and let's face it we can all get overstimulated. For our kiddos it comes like a truck. They see, taste, smell, feel EVERYTHING. It becomes too much to bear, and then comes meltdown central. There is so much we can do to help prepare and protect our kiddos from being over stimulated, but other times we just can't avoid it. Here are some tips that have helped us and our son cope during these busy and fun times.

1. Have a plan and stick to it! Know your child's limits. While we might love a social gathering it's fine to attend and enjoy yourself, but take cues from your child and know when a good time to leave it. It's better than staying too long and either not being able to regulate them for bedtime or possibly battling a meltdown later. (Add no sleep to the mix and things can escalate quickly).

2. Have a place where they can decompress. When going to a party or outing, or gathering scout out the place for a quiet corner, a guest bedroom, or the like. Ask the house guest where your child might be able to go for a quiet space. This way if you want to linger, you can give them a game (yes, even electronic, but not for a long time...that can also cause overstimulation) and have them listen to their favorite music (my son loves soft jazz). When they get home give them some time in their sensory space.

3. Be aware of the "munchies" provided, and bring a healthy options. It's never any fun to see all the yummy treats and not be able to eat them. We avoid food dyes and gluten for our son, (see-Dyes Diets and Wheat, Oh My!!)so we make sure to look at the food together and ask questions before we let him graze. Some children are independent after this, some still need monitoring, so be aware, or visit around the food table (you will be thankful later you did!)

4. Try to stick to small groups. While this is not always possible,  try to have times where it is just you and your spouse and their siblings for celebrations, or small gatherings where your child knows the people well. They will be watching out for your child, and your child will be able to regulate better and know what to expect with people they are familiar with.

5. Take time for quiet days (and get outdoors if possible!) This is so important! They need outside space to be able to breathe, process, and feel their body rhythm again. Having space to do this will help them get back to a healthy space that will help them do better in future gathering. Too much running around will only worsen things, so take time to breathe. You will appreciate the break as well!

6. Have a date night!! Get a babysitter, have the kids stay at home and enjoy a long night out if you want. They will be able to enjoy just being home and you can still be festive!

7. Make a schedule. Many children with special needs (including kids with SPD) really thrive on knowing what is coming next. We have a visual activities schedule and even have things like "going to the store" and "snack time" or "lego time" so our son can have a sense of order to his day. If you don't have a visual schedule even talking through it will help.

Enjoy this beautiful time of year, and plan ahead. You will be thankful that you did.

I am thankful

It's hard sometimes to look at all the good things that have come out of these last nine years of discovering my son and all his multi-faceted intricate details. But through it all, hard as it can be sometimes, I am so thankful for him! My life would not be the same, he brings joy to my life and sweetness to my heart. I love all his kisses!!

From the beginning:
💗 I am thankful for the patient friends and family who have been there for me to lean on, to cry with to ask why with, and just to let me vent while I figured everything out.
💗 I am thankful for the people who were understanding when my son had a meltdown, a screaming fit, a lashing out, a running off, and "seriously did you just put that in your mouth" episodes.
💗 I am thankful for those who believed me when I knew something was going on with my son and supported me all the way, even if they didn't understand it
💗 I am thankful for the first speech therapist that my boy had, who gave me hope, and helped me navigate and made everything about him feel so normal.
💗 I am thankful for the new case worker when we moved from east coast to west coast for not only helping us with new services but letting us know if we needed anything to help us navigate our new surroundings that she was just a phone call away.
💗 I am thankful that my friends didn't pressure me or my son to start talking and they just loved him for who he was (and his cutest jibberish language ever!!)**flashback-my kids were watching Madagascar and my little boy loved the music, he was just starting to form words and loved singing the Move it, Move it song. He would sing at the top of his lungs, "I ya ya moo mi moo mi, I ya ya moo mi moo mi, I ya ya moo mi moo mi, I ya ya MOO MICH!!" It's mine and my friend's favorite memory to date.
💗 I am thankful for family that have ALWAYS been by my side and loved my boy just the way he is, not expecting anything less or anything more of him and celebrating every milestone (to this day!) he accomplishes. I couldn't have done this journey without you!!
💗 I am thankful for the occupational therapy that my son experienced with his sensory integration with the birth to 3 program and the SI and horse therapy he had, this was a game changer for us and we finally were able to start really communicating with our son because of it! (not language, that was already there, but really understanding us). Seeing my boy in his element brought me to tears the first day I saw him there, it was like the boy locked inside got to come out and play. I will never forget that moment.
💗 I am thankful for all the nurses and doctors at the Seattle Children's Autism Center who helped with his Autism diagnosis and gave us the advice we needed to hear, wouldn't have gotten anywhere else, and heard me!! (no idea how much this meant to me!!)
💗 I am thankful for all the school psychologists, special education teachers, occupational therapists, teachers and principals (it sometimes takes a village) that have helped, supported, raised, and loved my son through all the rough and tough times. They see the boy he is and nothing less. Thank you for taking care of my boy during the day when I can't.
💗 I am thankful for all the babysitters, caretakers, family and friends who have stepped in and given my husband and I a break when we really needed it, and you were not only up for the challenge, you loved the time spend with my boys.
💗 I am thankful for my oldest son who has been the best of friends to my boy (and sometimes the worst of enemies-expected!). You have always loved your brother in spite of all the hard times, you laugh at his quirkiness, enjoy his perspective, and create and teach him in a way no one else could, without you my little boy would not be who he is today. You have been the best big brother ever!
💗 I am thankful for my husband who has been on my team the whole time. We didn't always agree with our son's care for every decision, but for the most important ones we fought for him, we encouraged him, we stood up for him. We cried for him, we were scared for him and we celebrated him...together. Thank you for all that you did when I had to go back to work. For learning how to understand him and becoming his greatest advocate. I am so proud of the father you became because of it.
💗 I am thankful for my Savior Jesus, where do I even begin. You showed me how you see my boy. You showed me what a light he is to others, how he needs to be wild and free because that is who you created him to be. You gave me hope when I had none, you gave me eyes to see what no one else could and you let me know I am not alone in this, ever. I am so grateful for all you have done.

Let's remind ourselves there is much to be grateful for. Have a wonderful Thanksgiving everyone!!

He said what?!

Outbursts can often be a difficult component that comes with children with sensory needs and those on the Autism spectrum. I realized early on that there were several reasons for these outbursts. First of all, as a disclosure I don't want to say that there shouldn't be consequenses for their actions from an outburst, but we do need to keep in mind sometimes these are out of the child's control depending on the severity of the disability and the other factors (such as diet as I mentioned in my previous post). 

Why does the outburst happen?

 It could be that the child misunderstood what was expected of a situation and became immediately upset. In these cases we need to take the time to slow down our thinking and not become reactive. The more anxious we become the more the situation can get it of hand. Being calm will help them become calm (even if not immediately) Anxiety in you as the caretaker will make them continue in the belief that something really is wrong. Hear them out. Let them be upset. When all is done then and only then can you address their behavior and the consequences (make sure it's related to the offense). I have also found when I provide a positive outcome of the calmness they are more responsive. (Such as, if you calm down we can go for a walk and talk about it-choose an activity they like but not a reward, there's a fine line) It helps them get out of fight or flight. This is the most extreme case. 

Other times it might be because their body rhythm is out of whack and they need input, even negative. So they will say things they know will get others upset (which it does) and in turn feeds their stimulation input. If you are noticing more outbursts a few things to think about is are they getting enough input? Or are they getting too much and need some calm down time put in their day. Either one can turn to impulsivity and create possible problematic situations. 

Sometimes it's a matter of change or too many new things at once that causes an outburst. Kids with sensory needs will try to take in everything they see, hear, taste, smell. It's a lot of processing for them. For children with Autism change is extremely difficult. Even new meals. They feel out of control, and when that happens it difficult for them to regulate how they are behaving (including what they say). 

I have found when outbursts happen I take note of all my son's environments (school, home, friends) to help identify the possible cause. It's not easy to stay calm and it's really hard not to worry when all of the sudden your young child  has the mouth of a sailor. It's important to note being aware of what you say out loud and what you talk about can influence the words they might choose. Chances are they might not even realize the words they are using. (No, we don't talk like "sailors" at our house but we aren't perfect). 

Teaching them what's okay and what's not okay is our job. It will be harder some days than others and you might cringe every time the school number shows up. But, remember you know your child best. My son is such a sweetie and I just have to remember that when he says harsh or mean things. I can't promise it will get better but we can always do our part to make things work. 

Dyes, Diets and Wheat, Oh My!

I know with the whole gluten-free phase that a lot of people think that it's being over done due to health reasons, but it gives those of us who don't really have a choice in eating it our not a bad rap. I am gluten intolerant myself. (I have a facebook page called No Wheat No Dairy No Problem if you would like to get some ideas of how to modify your diet.) It takes time, and sometimes you need to take steps to get there, but it's worth it (at least for me and my son) to get the results (no more bloating for me and better regulation for my boy).
For sensory processing kids, children with ADD/ADHD and those especially on the autism spectrum gluten can really affect and disregulate their body and their mood. But, it's not just gluten, other things also can contribute to mood, regulation (being able to focus and stay calm when upset or calm down withing a reasonable amount of time) and the ability to engage in the world around them. Dairy, sugar and other foods also play a factor. Artificial food dyes are one of the worst things our children (or we) can eat, even more so than gluten, but I believe this to be true for all children, regardless of any diagnosis.
 After my son had his diagnosis at the Seattle Children's Autism center I was informed that statistics have been proven that kids with Autism are affected by gluten and dairy, but especially gluten. It can cause them to exhibit symptoms that put them further on the spectrum than they already are. (This has also been proven true for ADD/ADHD children and children with SPD as well and helps them to focus better if they are on a gluten free, dairy free, sugar free diet). We chose to eliminate gluten and decrease sugar substantially for our son, and it made a huge difference for him. We chose not to eliminate dairy, and part of this reason for this was it was an easy protein for him and has a good amount of sodium. Children with Autism lack sources of iodine in their body, so salt is a benefit for them. So, while we choose to eliminating gluten, we do have gluten free cookies (which contain sugar) and ice cream (dairy and sugar of course), but not too often (especially since he sometimes binge eats-both an Autistic trait and a sensory seeker trait-he loved the crunch in his mouth and the pressure a cookie had on his gums).
Moderation...how do we accomplish this?! Here's what I do. I take all the cookies out of the box, and put 2 in a baggie so he knows he can only have one baggie. This actually works better than just grabbing from the box. He could always grab another baggie, but often times he doesn't (or I am not catching him!). I don't buy them often, or I use rewards for buying them. If he goes to bed well for a week, and listens well, at the end of the week he might get a treat (that contains sugar). Just being mindful and helping them make good choices is important. If they are younger, hiding or keeping things out of reach is important. Some people have even had to lock up food, and there is no shame in that as long as some food is made available (especially healthy choices). It's about protecting them, and helping them have healthy bodies and minds. If they binge eat sometimes we need to go to these extremes. I also provide visual charts of different types of healthy foods he can eat so that he is given the choice.
Most importantly, have snacks on hand, always. I once had a horrible experience on a family vacation. My son had eaten breakfast and we were out around town enjoying the day until our ferry was departing. That particular day, we couldn't seem to find any lunch choices that were gluten free. The sandwich bread that was gluten free the deli had run out of, and the soup was not one of his liking. All they had in the little shops around town was a double chocolate cookie, and yes, I made one of my worse mommy mistakes to date. I let him have the cookie. What I should have done is gone to a Drug Store and bought a pepperoni stick or some nuts or cheese singles (the single serving cheddar cheeses). What proceeded that cookie was one of the hardest meltdowns I had ever faced. He started with teasing his brother to no end, and after several failed attempts at asking him to stop, I told him he wouldn't get to enjoy the deck above the cars, we would have to stay in the car. My sister took my oldest son up on the second deck and my son exploded. He started thrashing around in the car, and screaming at me like I had done something terribly wrong. Folks, you have to forgive yourself for making choices like this. All I could do was remain calm for him and stand my ground on the decision I made. I was worried he was going to do something worse or be unsafe on the boat. He screamed and thrashed for almost an hour. At one point I even had to leave the car and stand outside as he started hitting me too. An "angel" came when he started to calm down but continued to cry. She had two dogs and thought maybe it would help him. The dogs were smelling him and almost making sure he was okay. My son just wrapped his arms around one of the dogs and started to breath deeply again. He was finally calm and I swore to myself I would never do that again.

These are some of my son's favorite snacks that we keep on hand:
Vermont pepperoni sticks
Gluten free tortilla chips (salty and crunchy snack, and my boy needs carbs!)
Almonds
Dried cranberries/nuts and chocolate chips (we buy the Trader Joe's brand)
Mini pepperoni slices (good for a trip but I wouldn't keep them in the car)

For more resources on help for diet check out this book:
https://www.amazon.com/Disconnected-Kids-Nutrition-Plan-Neurological/dp/0399171789/ref=sr_1_1?ie=UTF8&qid=1478485007&sr=8-1&keywords=The+Disconnected+Kids+Nutrition+Plan%3A+Proven+Strategies+to+Enhance+Learning+and+Focus+for+Children+with+Autism%2C+ADHD%2C+Dyslexia%2C+and+Other+Neurological+Disorders

OR

https://www.amazon.com/Kid-Friendly-Autism-Cookbook-Updated-Revised/dp/1592334725/ref=sr_1_1?ie=UTF8&qid=1478485214&sr=8-1&keywords=Kids+diet+for+autism+and+adhd

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My prayer for you my boy

Sweet son,
I pray that you will always know you are beautiful and created to be just who you were meant to be. I pray that you will believe in yourself and be anything and anyone you choose to be. I pray you will know you are loved, no matter what anyone says about you or calls you or thinks of you because you are bigger than that. I pray you believe you have so much to offer this world. You are His little light and you shine into the lives of so many others. I pray that no one tries to take that light from you. I pray for protection, from words, from judgements, from fear that will keep you from being the wild and adventurous boy that you are. I pray that you will accomplish your dreams, never give up on your goals and have the support to see all you were meant to see. I pray you will always see the great in others regardless or race or religion or political view. I pray that no one will try to fit you in the mold they call "normal" because you wouldn't be you in any other way. I pray you will find love and the depths of happiness that money can't buy and I pray you will always trust Jesus to guide your way. I love you my sweet beautiful boy...and you will always be my baby boy.

How to Survive a Tantrum

When our kids get into a space of either being overstimulated or having difficulty dealing with their emotions it becomes difficult for them to calm down. Having a sensory space does help with the tantrums when things are going difficult at home but when we are out it's not that easy. I have found myself many times in a store or out doing my errands when my son is all of the sudden things become unmanageable. There are some ways to avoid this. It's not fool proof, but it can help. Before you even go anywhere, have a schedule, visual is even better. I've had my son even hold it on our errands. This really helps because they need to know what to expect in their environment his or her environment and to be able to process the possible sensory inputs that they may be experiencing. For example, every time we went to the grocery store my son would become very upset near the seafood section because of the strong smell of fish. So we would either make it that the last stop before we left the store or my husband and I would go to separate sections of the store so we get could the seafood without bothering him and setting of a meltdown. 

As a parent you also need to remember that your child may react differently if they are hungry or thirsty, had too much sugar, or have not had enough protein in that day. This way, we can gauge whether it's worth it to go out and do an errand, or take care of those needs before we go. Sometimes we don't have a choice, so having snacks on hand or even a fidget toy purse could possibly help them just to be able to calm down in any new environment or in a very busy environment like a grocery store. Sometimes there are just circumstances that we can't avoid and all of a sudden our child is either on the ground as a five-year-old or six-year-old or (insert your child's age here) and they are very upset at something that is not going their way and who knows where it came from. When this happened I need to check my surroundings. Is everyone around my child safe? Is he safe? Then I have to ask myself, do I stay after this is done or do we leave? Either way as sensory parents and as parents of children with autism when we go out, we need to ask ourselves what will the outcome be if a child has a tantrum. Are we going to sit and wait and let them have their tantrum? What is going to be the outcome? If we have it in our minds before hand no matter what happens then it will help us have a plan when it does occur.

 I have found that sometimes they really do need to get these tantrums out of their system in order to feel more comfortable in their body again and sometimes it's their only outlet. It's not fun for us as parents but sometimes the child just needs to get it out. If you are noticing aggressive behaviors with your child then chances are things are building up but they are not being addressed with your child. There are a number of factors as to why this is happening. It could be a chemical imbalance, it could have to do with diet, it could just be sensory overload or a need of sensory input. I used to have an agreement with my son that if he had a tantrum in the store that we would sit in an area of the store and wait until he calm down then we would talk through his feelings (of course after he was calm) and then we would continue to do groceries shopping. But I needed to have a plan ahead of time and even schedule in that possible tantrum time to make sure that when I went to the store I had ample for whatever we faced. That may not be your approach, but  having a plan helps you and it helps your child. 

One time we were in a bowling alley and he had thought that because I had said maybe we would be able to get a treat from the candy machines that it would happen, no questions asked. (Never say maybe to a child with autism, it's not literal enough). So when we finished bowling and we started to leave and he realized that he wasn't getting a candy from the candy machine he started to have a meltdown. This was probably one of the first extreme emotional meltdowns that my son had in public. And something in me just told me to wait and let him get it out. So I stood my ground, and said we weren't getting candy, and I zoned out every single person around me. I didn't care who was watching because I knew that my son needed to have this outlet so I waited until he was completely calm and before I could even say anything, my son looked at me and said "Thank you mommy". This was a pivotal point for me because I realize that my choice to let my son have a tantrum was so important for him. He had so much building up inside him. It may not seem like a tantrum is a good thing, but it might be a necessary thing for your child.

When other children are involved in the situation of a meltdown or a tantrum we may need to intervene. In the case of a volatile situation where a child becomes aggressive, you may need to remove the other children and even yourself. As long as your child is safe and simply saying this is not OK and walking away may be your only choice because chances are your child is becoming aggressive because they are in fight or flight mode. 

Fight or flight means that the executive function is no longer functioning. The executive function is the frontal part of the brain that helps a person with a reasoning ability. When the amygdala (The area that responds to fight or flight) is activated then it overrides the frontal cortex (the area that tells us to make a good decision). When the amygdala takes over your child is no longer processing what you say to them so the behavior will probably not change. The best decision is to walk away, and take others with you so that everyone around them is safe. This is a scary place to be. No parent wants to have to protect their child from their other child or children in their home but sometimes its our only choice. As equally important when that child does calm down and you need to talk to them about the make sure that the other child isn't in the room until you come up with a solution to rectify the situation. Helping them to problem solve about what they might be able to do differently will help in future decisions. I will spend time in a future blog discussing ABA, but this service really helped our child.

Surviving a tantrum isn't easy and it's exhausting. Make sure to give yourself that self-care afterwards. It's really important. If you can remain calm during a tantrum that will help things, and your child will work towards regulating just by watching how you respond. You might need to give yourself the space from your child afterwards, ask a friend or your partner to help with watching your child to give yourself some free time to be able to decompress yourself. We suffer the trauma too, and if we don't take care of ourselves we can't meet the needs of our family. Whether it's bubble bath, a glass of wine, or a chat with a friend, take time to recover, we need to survive! 

Please don't glare

The year my son turned 5 was a really hard year for us. He was in Kindergarten, and had to follow the rules of school. Sit in a seat, don't blurt out, mind your manners, color in the lines (okay, maybe that is just some teachers). My son was not viewed very kindly. He was a disruption to his peers, he would wander around the grounds. Do exactly what he was NOT asked to do (such as whack the fish tank when he was told not to, because it might hurt the fish-yes, one died, and then he learned to never do that again). It was hard lesson after hard lesson. We were told by a staff member that he is just making bad choices, but honestly the way they said it, I just heard, "You're son is bad". The looks of disappointment cut to my core. I was told at a behavioral concern meeting that maybe I needed to manage his behavior better, or maybe it was something we weren't doing a home. Did they know that the lessons I tried to teach him was taught a thousand times? No! It felt pretty hopeless, and my husband and I were considering ourselves pretty bad parents. But, one woman observed him (she was a specialist in the district for Early learning intervention) and she noticed he had difficulty understanding cause and effect. Yes! That's what I have been trying to tell everyone!! It was starting to become clear.

Around the same time things were looking hopeless at school, I was talking with his occupational therapist about Asperger's (now called High Functioning Autism). I had been noticing in my readings some of the similarities between the Autism Spectrum and my son. They have delayed language skill, my son didn't learn to talk until he was 2. They have one interest fixations; my son has loved dinosaurs since as long as I can  remember-now he wants to be an archaeologist and dig up dinosaur bones. He always lined up his toys and organized them (sometimes according to color), this is another indicator. If he learns a new game, it's ALL he will think about, and talk about and eating or all other functions become secondary, and it's a one sided conversation (common for those with autism), He can use advanced vocabulary in context without entirely knowing it's meaning (High functioning autistic children are very complex detailed thinkers). He doesn't like to look anyone in the eye he doesn't know well, and he prefers not too, but it doesn't mean he is listening. He does a happy wiggle every time he's excited about something and dances with his hands. He is scenario based, and one skill in a new environment will not transfer unless he has been in this environment several times and knows the expectation (for example not jumping on the furniture, he would climb and jump on any new person's house even though at home he is not allowed-well, climbing, but not jumping). He also has no volume control (this is getting better-and could be because his dad is from the New York area). There are no gray areas for him, so if you say 'maybe' it means yes, even if it's not an immediate yes. He takes things literally (he is starting to understand when people are teasing or over exaggerating but only if he knows you well). These all fall under the autism spectrum, and I started to add them up and realized maybe we weren't addressing the whole need.

We decided to have him evaluated by the Seattle Children's Autism center and for the first time in my life I felt like someone heard me. It took a year wait list (again) to get in, and another 4 months to have a full diagnosis. They screen for ADHD, and other possibilities before concluding it was autism. They were very thorough and helpful, and really took the time to know the whole story. But, it was very draining, and it took some time. It was confirmed, my suspicions were right. My son has autism.

Shortly before his diagnosis I had already decided and I knew in my heart that he did in fact have autism. I was trying to process things, and trying to avoid people that looked at my son differently, turn away from those who shot horrid glances in my direction in stores when I would say no to him and he would tantrum, One time, I will never forget when my anger just couldn't stay locked inside. It was summer time and the bees were in full motion, which my son was deathly afraid of and would run away from at all costs, even his life. We were in a grocery parking lot, and he thought he saw a bee and ran into the street in front of a vehicle. The woman in the truck thankfully slammed on the breaks, but then yelled at me, "Watch your son!" I screamed in all desperation, "HE HAS AUTISM!!" I grabbed my son's arm and went to the car and just sobbed. It took some time to compose myself and I told my son I was sorry for yelling and that he needs to stay by me, I assured him I would take care of the bees or any bug that bothers him. All of the sudden I had a knock on my window. The same woman stood there with full remorse on her face with a bouquet of flowers. "I'm so sorry, it must be really hard for you" she said as she handed me flowers. All I could this, is "Yes" because so many people don't understand, they just look at me and judge me and my son, and he is trying. He is a sweet boy, and somethings are out of his control.

So, before you judge a screaming child or the parent who is accompanying one, just remember, you might not know their story. To those moms, I always say, "I understand, and you are doing great." To the woman who gave me flowers, "Thank you for understanding, and I forgive you".

Making a Sensory Space

One idea I found helpful was to have a space in our house for our son to go and be quiet and calm down. I found great ideas from other parents, from Pinterest and from my son's OT. There are a few things to remember when putting one together.

1. It needs to be there space. It's like a "room" that is their own, so asking permission to go into their space is a must from you and siblings

2. It needs to be filled with things they love. We had an eye-spy bottle,velvet blanket tacked up on the walls (he loved the feel of it), his bean bag chair, his puzzle ball, along with other sensory items he loved (like his "stuffies") (Check out the facebook page B-inspired Momma for some great ideas for sensory crafts and possible things to put in your child's sensory room)https://www.facebook.com/B.InspiredMama/?fref=ts

3. It should be a closed off space with less light. Sometimes even light can be over-stimulating for our little guys (and gals). You don't need it behind a door, even a curtain will do. We decided to use our son's closet space (clothes removed), we used a shower curtain rod with a cloth curtain he could leave open or close.

4. No one else can use the space (unless allowed by your child who "owns" it. This is important, because it needs to be available for your child when they need a time out...but don't use it as a time out! Haha! Otherwise it will defeat it's purpose.

5. Create the space with your child. This place is their space, so get their input, ask them what they want to put in their "room". They are so creative and will think of lots of fun things you might not have thought of.

Having a space for them when they are in flight or fight will help them to calm down enough for reason. I will discuss how to handle fight or flight in a future blog, I am still learning how to handle it myself. The larger the child, the greater the sensory need, and my son is now 9! They grow up fast!

For more ideas on what to put in your sensory room check out my blog post Sensory Tools.

Sibling Care-don't forget they have needs too

My oldest son has always loved his little brother (the one with SPD), he would cry when he cried and bring him toys to his swing (which he loved, no surprise there) and sing to him as he rubbed his head. As they got older though and the screaming and constantly needing to be held started to make my oldest felt left out. My youngest not only has sensory needs, he also has autism (high-functioning-also known as Aspergers-I will discuss it in a future blog). The struggle with relationships for my youngest began against his brother. You take my toy, I scream, you move my line of blocks, I scream, you play the game differently than before, I scream. My oldest would run away and cry and hold his ears (they are only 21 months apart). My oldest learned early on that he played a role in helping our youngest navigate life. We didn't put him in this role, he just came to it as the closest person other than us to our youngest. He still struggles with the hard days, the meltdowns and the rigid fixations (another indicator of autism) and of course these things occur more frequently when his sensory needs aren't being met (or something went wrong in his diet-I will talk more about this another time). 

We learned early on that our oldest needs breaks, time away, time to process and time to remind himself why he loves his brother so much. I think all siblings could use healthy time away from each other, but even more so in the case of a sibling with a disability. They can easily become mini-parents and my husband and I have worked to help him not feel that responsibility on his shoulders. 

We have recently started sending our oldest son to a sibling support group. They also have a parent to parent group which is great! We need to be able to talk about these things with others who get it too. The sibling groups mostly get together and just have fun; they also talk through how things are going and the struggles they face due to their siblings behaviors. If there isn't a group like this in your area and you can't find local support, there is almost a group for every disability out there. We enjoy a sensational parents group, and Asperger experts (they have amazing tools in how to navigate Aspergers as a Neurotypical-someone without autism). 

Most importantly listen to your child (the sibling) and watch for signs of distress. Have special time with them so they know their needs are important too. All children have needs and their voice needs to be heard too. 

A word of advice from our son's older sibling (11yrs.)

“My brother is really creative, and he has a lot of ideas. He is good with clay, we had a Claymation set we got for Christmas, so we made clay for our Claymation. We had 5 packs of clay with different colors. One packet was Dinosaurs that tell you how to make the characters, and we didn’t listen to that, we just made up our own characters. It was really fun and we made a bunch of videos about camping, friendship and people coming to our house and we made a table with dinner and one guy ate all his food and his plate too. We also play Lego, and we pretend we make our own Youtube, we call it braintube. We create characters and make up names for our channels. It’s all made up and I am the "popularist" one.

Here’s what I dislike about my brother. He’s really crazy, and by crazy I mean crazy. Also, he pushes me to play games that I don’t want to play, and if I don’t sometimes he hurts me. I hate bedtime. I get all ready for bed, and then he turns on the light and it goes back and forth. I tell him to go to bed, but he keeps getting up and MAN it’s so annoying and dumb and I really don’t like it. It’s non-stop. We play this game at bed time called school and we pretend that I am him at his school and sometimes I react differently than I might with the teachers and his friends. He plays the other people like his teacher or his friends. That’s actually not a dislike, I like that. But, sometimes when I’m really tired he begs and begs me to play it. So, I tell him to stop asking, but then he won’t stop, so then he turns on the light. Sometimes when I am sleeping he gets up on my bed and he won’t get off, and then I call for mom and he blames me! Also, he goes to the bathroom, then goes to mom and when he comes back and turns on the light, and it hurts and burns my eyes. That’s all I have to say.

My advice to you is be nice to them, don’t tick them off. Try not to be angry at them, because they will get angry at you. Sometimes my brother punches me. So, I guess I could say I like him so-so, and we do have fun.”

As you can see, it can be hard. My boys haven't always gotten along, and it breaks my heart. But, the truth of it is my oldest has had to get the brunt of the younger's fury. I still see that they love each other, it's just a balancing act of letting them play and work things out and knowing when to step in. I take the time to hear out my oldest and let him be angry and have a place to vent. We try to let this happen privately because it's hard for our youngest to hear (especially very angry words) but either way we give him a chance to express it, in any way he needs to. It's one way to achieve balance in our family. We can't forget that our other children have special needs too. 

This is an excellent resource and their newsletter is full of great information! They work with families of all disabilities. 

http://arcwhatcom.org/

My beautiful climbing boy

Part of this journey has been accepting who my son is, with all the ways he experiences life, accepting his abundant energy, and embracing his love for climbing and enjoying life! I was talking to a friend today (you know who you are…take things easy!) and we were discussing how much we don’t really like the word “disorder”. Honestly, to us who don’t have sensory needs (while all of us do have sensory preferences) maybe it might seem like that because their body doesn’t react to things in a way we think of as “normal” (by the way, I really dislike this word, I grew up hearing that “normal” is just the setting on a dryer). We can’t all be the same, and I would like to venture some of the greatest astronauts have SPD, as do many that involve tolerating great body pressure (such as pilots). My son is beautifully and wonderfully made EXACTLY as intended. That being said, after the diagnosis I needed to step back, take a deep breath looking at their “findings” and have a good cry. Don’t forget to grieve that there is something that wasn’t expected about your child, and life can sometimes be difficult for them to filter. It’s important to make sure we don’t  just brush it off like it doesn’t matter, because in their world it matters a great deal.

But, I started feeling like I needed to control his environment, teach him all he needed to know and harness him to be like others…before you judge, I know now that was NOT what my approach should have been. You are going to find if you have a child that senses the world differently that the rules of your home are going to have to be a little different. My son crawls on the back of the couch (like our cat) because it makes him feel good, and the balance helps his body, I kept telling him just to sit down and calm himself. He used to constantly climb the wall frame (yes, literally) that joins our living room and kitchen, and I told him to get down, it was too dangerous!  He hung on our arms and asked to be swung like a monkey, and I said I was too tired, go watch a movie.  I wanted to reign him in, “tame him” so to speak. I was exhausted, and I wasn’t happy, or even close to enjoying my son. I would in desperation put him in front of a screen (this causes overstimulating especially for kids sensitive to stimulus and in turn made him more hyper) instead of taking him to a park, or even grab his arms and swing him around because I was not accepting it, I was controlling it. It can be hard, especially if you are not super active like your child (like me). But, you need to give them the opportunities to meet the need without the struggle. 

I reached a point of utter desperation when I saw myself (in my mind’s eye) holding dozens of wild horses, trying to pull them in, trying to make these animals tame. All the while my hands were clenched, my sweat and tears were all for not. These animals were meant to be wild, and I was holding them back. I was holding my son back. 

I finally let go, but I did it with peace, I knew it was the right thing to do. The amazing thing is that I saw the most beautiful sight in front of me. My beautiful son, the wild stallion, finally free to be what he was created to be. 



Does my child have SPD? How do I know?

What does a child having a sensory need look like anyways? Is my child just have high energy or could there be something more going on? My child was diagnoses with ADHD but the medication and therapy isn't helping.

I realized I needed to back up a little bit and just talk about what might sensory processing disorder look like on your child. Be aware, I do not have an occupational therapy degree, I am not a doctor. But, I have read a lot, been to workshops, talked with other parents of children with sensory needs and asked a lot of questions. Often times sensory needs accompany another disability or diagnosis that overlaps. I have heard it been said that all children with autism have sensory processing disorder but not all children with sensory processing disorder have autism. I have also heard it said that many foster children and adoptive children have some form of sensory need. Sometimes children with dyspraxia exhibit sensory needs or aversions. So, keep in mind this might only be part of your child's need and continuing to explore more possibilities is important in understanding the whole picture. Here are some indicators that show certain behaviors or types of characteristics that might lead to suspecting a child has sensory processing disorder. (This is not a complete list, just from my experience and others who have a child with sensory processing disorder (SPD).

1. My child has aversions to certain types of clothing, shirt tags bother them or certain clothing that feels fine when you try it on in the store might be something they reject because it doesn't feel good on their body after they get it home. 
2. My child never likes to wear shoes or socks indoor or outdoor no matter whether it's raining or muddy or snowing. Or my child hates the feel of grass under their toes does not like light pressure on their feet especially things like tickling. (my son adds because it itches)
3. My child really enjoys being muddy or getting their hands in the dirt or touching things that are sticky or the opposite, they do not like having any wet clothing or having anything sticky or dirty on their hands and they always feel like they need to clean their hands or their body. 
4. My child never tires, always likes to climb on things, doesn't like to get out of the pool doesn't like to leave a sensory rich environment such as a trampoline or a gymnastic environment. (Climbing or extreme energy in any given environment without picking up the cues of the social norms around them (this can also be an indicator of autism). 
5. My child seems hyper active and not able to calm down when necessary and finds it difficult to sit in one place for any length of time (often times children with sensory processing disorder are misdiagnosed as having ADHD)
6. Some children with sensory processing disorder have difficulty sleeping or staying asleep throughout the night
7. Your child may have difficulty knowing how to dress for hot temperatures or cold temperatures and might wear a long sleeved shirt in the summer and shorts in the fall and winter. 
8. Your child may enjoy crunchy foods, salty foods and foods that are spicy. (This really depends on their sensory needs)
9. Your child may enjoy a variety of tactile (to the touch) activities. They may enjoy clay and use large amounts of Vaseline rubbing it on their hands and body or playing with toothpaste or other things that are creamy. They might enjoy rubbing it on their hands, hair or body. (My friend's son has processing disorder and he once got into a bottle of Vaseline and rubbed it on his entire body and when asked about it said that he just wanted to look at it). 
10. Your child may enjoy carrying heavy things, pushing heavy objects moving things around like books and furniture. 
11. Your child may more easily become sick because they are using their energy far beyond exhaustion and don't know when to rest. (even when they are sick they have a hard time resting and still desire sensory input
12. My child has aversions and sensitivities to certain smells, tastes, textures, and sounds.
13. My child loves to exercise and be outdoors!! (this is a bonus if you are wanting to be more active, most of our sensory loving kids will get us to go outside and enjoy nature and you will come back with a happier child!).

These are just a few things from my experience I wanted to share with you. Please leave me questions in the comments, I would love to tell you more and answer what I can.

***I apologize if you read the post without my editing, oops!!***

Sensory Quiz: (an online resource)

http://www.additudemag.com/quiz/19/question-1.html

I think my child has SPD, now what?

http://www.sensory-processing-disorder.com/step-by-step-guide-for-spd-parents.html

Sensory Tools!!

Today I would like to share with you some of the sensory tools that have really helped my son regulate his body to be able to calm the areas that required more sensory input. There are so many different tools out there and different websites that can help you find tools that will help your child not only at home but at school. One thing that we realized is that even though the occupational therapists focus for our son would have been hand writing, our son's school offers consultation available to any child that has a need. Every school is different, but it would be a great place to start if your child in enrolled in public education. They provided seat cushions, stretch bands for their chairs, lap weights, weighted vests (not easy to come by) and for students on an IEP (indivualized education plan-more on that later) there was time in the sensory room which carried swings, padded mats, and the like.
Finding the right tools really depends on your child's sensory needs, and chances are you already know what those needs are because they are the things your child naturally gravitates towards. For example, my son had a high oral sensory needs, so he put everything in his mouth to chew on. It was not because it tasted good (or maybe it was, we will never know) but it was meeting a need in his mouth. Imagine your teeth when you are on a bumpy road, or if you are sitting on something that makes your teeth chatter and all you can do is clench down to make it stop. This is similar to how my son was feeling, almost like a teeth itch that needs to be scratched. Each child has different needs and different tools they love. I listed a few below to give you an idea of what I mean. Most of these tools I purchased were found on Amazon. Take a look!

 www.sensoryuniversity.org
I googled several tools I had heard were working for other children, this store has so many I haven't even purchased as many things as I would like, so be careful (or just get carried away, why not) and have fun!

Fidgits:
This is just one possibility. Be aware they come apart, so not good for children under 3 yrs. of age. They move and pull apart, and put back together, make one big circle, etc...and the list goes on. These are great tools for the constant fiddler (especially when needing to sit still and those little hands need things to do!

This one does not come apart and makes all kids of different shapes.

Seating pads:
This tool helped our son stay seated at the dinner table, and when he started going to school he would keep it at his desk. They can wiggle, and sway but mostly stay in the seat! Sometimes that is our only goal, right?!


Lycra!!!
One of my favorites, if you have the room, this is the ultimate fun for our sensory seekers, and even the avoiders love these, because it's based on their control and it's not a light feathery touch (which is often irritating rather than comforting)
Here is what I would love to have for my son (if I only had a sensory room!)
The key is to layer these, and have safety hooks, etc. There are some with a tighter knit that resists against the body more and they are layered tighter weave to more loose weave. My son had access to these at his OT services (outside of the school). He would climb in and out of each layer or just lay in the middle of all three. This was like a climbing hike for him and a full body pressure. As long a a hammock has a hugging feel that would also be an easy option to install in the home.

Hanging bars:

This is a good option for a hanging bar, but most kids are not able to reach without the help of an adult. That being said, if you have a bar low enough for them to reach, chances are you will hit your head or body on it. This was a later option that we tried, and it works well, but only with adult help (so not as ideal). I am still in search of a kid friendly option that will work best.

Bouncing:


The mini trampoline was the greatest investment to help our son get out the energy he needed and as I stated before to stimulate all the spinal vertebrae. (This activates the body enough to stimulate nerves to activate the brain that the body is being exercised.) You can get these used to save money, so start at your local craigslist.

This one is a bit larger, so make sure the one you to fit your child's needs. It also has a bar that my son used to love hanging on.

Manipulatives:
This one will be based on your child's interests. My son loves puzzles (problem solving the shapes within the shape) so here are some things he loved.

My son loved being on a rocking chair and playing this, it was very calming for him (better than a video game! More on that later)

Magic putty, or hand putty is a great tool. We used to bring these to the restaurant with us. They have ones without eye balls, but this one is our favorite. There are ones with glitter in them (and it stays in the putty), toys in them, and it's not like playdough that gets everywhere.






If you are okay with clay, then that is also a great tool for those creative builders of ours. I would recommend the white/tan colored clay. It's cheaper, and you don't have to worry about dye affects (I'll explain another time).

Most importantly is finding the tool that best fits your child's need.

My son in his current favorite sensory input tool.

More resources:
Seat pad
http://www.quill.com/cando-vestibular-disc-14-red/cbs/437991.html?hidedisruptive=1&cm_mmc=SEM_PLA_OS_437991&mcode=SEM_PLA_OS_437991&gclid=CjwKEAjwkJfABRDnhbPlx6WI4ncSJADMQqxdNGJD62xYaL_K83MI5yDghxppjRbhD_7apZkR02OVFBoCaKvw_wcB
Lycra bed sheet (great for those who like to be wrapped up like a hot dog-my son)
https://www.etsy.com/listing/241167119/lycra-sheet-compression-sheet-stretch?utm_source=google&utm_medium=cpc&utm_campaign=shopping_us_a-home_and_living-bedding-sheets_and_pillowcases&utm_custom1=6df8a864-9ada-45cd-a881-d93e3b6c8ed8&gclid=CjwKEAjwkJfABRDnhbPlx6WI4ncSJADMQqxdbzKZQ1gfvHbytsIo_radQU_lTbEXN5_iZRlBUui85RoCeGHw_wcB
Make your own weighted blanket (It's not as hard as you think)
http://www.friendshipcircle.org/blog/2016/08/23/diy-weighted-blanket/
My Pinterest Sensory board:
https://www.pinterest.com/ambersalad/sensory-childautism/

Why the labels? Why is diagnosis important?

I received a lot of push back from people, family, friends, strangers, school staff, etc. on trying to diagnose my son. Let me be the first to say that I do not look at anyone with a "label". We are all unique individuals that carry different strengths, weaknesses, and abilities. All this to say that when you do have a diagnosis you have answers, and unfortunately it's sometimes the only way you can receive help. So, my purpose in looking for answers with a diagnosis started with helping our family meet the needs of our son, and educating us as parents and finding ways to educate his sibling how to help him and how to understand it. Keep in mind, the waiting list for these programs is long, but asking around about the best approach, connecting with local Facebook groups, and finding others experiencing the same thing is important. They will tell you where your child's needs will best be met, so don't be afraid to ask. Remember, it's worth the wait (even if it's 1 year), but during the waiting connect with the support to help you through the waiting days.
At age 4 my son was screened for sensory processing disorder. It was an interesting process of walking, swinging, manipulating objects, balancing, spinning, etc. Since I had prior knowledge of the terms (and done my own DIY evaluation) I was more familiar with what the results meant. What I didn't know was how to help him. That is where they came in. They told me that it's not just exercising that will help my son receive the input (pressure to his body) that he needs, it's certain exercises that will target the areas of deep pressure where his brain will be able to receive the signals. I know, brilliant, right?! So, instead of becoming my son's constant jungle gym I was able to help him navigate things he could do with my assistance, or places we could go at local playgrounds. These included doing the "wheelbarrow" with increased body weight into the pressure of his joints of his shoulders; playing on the monkey bars, stretching the body using body weight, and things like jumping jacks (each vertebrae of his back being activated by the jumping). These were some whole body exercises. We also worked to increase his tactile senses by bean bins, clay and water play (bath time!!) I still have my son take a bath if he's starting to fill bowls of water and play his Lego guys in them, it's obvious he's needing sensory input-water is one of the best ways to receive input on whole body. I did consider gymnastics (great for sensory seekers) but couldn't afford it at the time.
He went to his OT at this establishment and they made goals, worked on input and processing for his body and his mind. It was amazing to see the results! My boy was in his element, and he was calmer, he was able to understand more (he wasn't trying to process his body needs AND language at the same time) and we were seeing him be able to manipulate things he never could before. He can button up a sweater!!! We still had food struggles (still do...working on that) and safety issues that needed to be resolved, but he heard us more, and we knew how to help him.
This is why I always tell people, it's not about what they call my son, he is not confined to a label or a diagnosis, he is a bright, sweet, kind, loving boy who just needs to climb! Now I know this, and without all the testing, and working towards finding answers I wouldn't have been able to help him or had the support we now have for him. We know it's not who they are, but it's a way to find out more of who they are without all the "noise" getting in the way.

More exercises I found in this book:
https://www.amazon.com/Out---Sync-Child-Has-Revised/dp/0399532714/ref=sr_1_1?ie=UTF8&qid=1476726568&sr=8-1&keywords=the+out-of-sync+child+has+fun

Keep up the fight

We thought our greatest battle would have been helping our son to talk, but it seemed like other things were not falling into place as we would have expected. He still had frustration, his language and understanding was still limited and we had just moved from East Coast to West Coast to a new environment where we would need to continue his services. Once he aged out of the 0-3 system, we thought, now what? He's not in the public school system yet (or even private school). He was almost 4 and we thought maybe preschool would be a good option. Around that time we noticed he was not heeding our safety advice, even after hundreds of times. "Don't run across the street!" "Don't climb the table in the restaurant!" "Don't put that in your mouth!" (this one happened a lot, it seemed that my son was still exploring the world through his mouth). So, we thought, maybe Special Education services would help us and we had him screened for an inclusive preschool that would help, or so we thought. We were starting to learn more about sensory issues from the birth to 3 program and that some kids required more sensory input (called a sensory seeker, our son exactly), while others are overly sensitive to stimulus and their senses are heightened (called sensory avoiders-not our son at all). All children with a form of sensory processing disorder can easily experience sensory overload (visual, smell, sound) So, we had our son evaluated for the only area we could think of as pertinent, OT (Occupational Therapy). However, in the school system, occupational therapy focuses primarily on hand writing or coloring. They didn't see a need (not surprising) and found his interacting with his brother to be extremely surprising (of course he did know him since birth, so obviously he was comfortably with him socially). We left discouraged, not because he was screened as highly intelligent, but because we still didn't have help for our boy.
I started reading a book called The Disconnected Child to find answers. I honestly can't remember who recommended it, but things started to come to light and by way of observation and "evaluation" I was able to put a name to the things that were happening to my son. His vestibular was off, his proprioception was out of whack, and his right ear didn't process with understanding. Yes, those are big words so let me explain the best way I know how. If you have a normal vestibular function (which is an inner ear balance); as you spin and stop, you're dizzy and your eyes keep moving. If you have an under developed vestibular, when you spin your eye movement (flux) will only happen once or just a few times. My son could be spun 40 times and within seconds return to running in a straight line (a fun exercise, but concerning nonetheless). This means that the body's energy source is not computing in his brain(therefore, not getting tired). Proprieoception is the ability to see in appropriate depth (depth perception). So, when on a high playground set he would not realize how far off from the ground he was (posing a safety risk climbing on the outside of the playset), and he would often times run into walls (literally). This affected his ability to stay safe when climbing on anything, or be fully aware of his surroundings. These two things being under developed caused my son to not be aware of where he was in comparison to things around him, and also his brain didn't know when he had exerted himself to exhaustion, making him more likely to get sick. We were on constant alert, and become exhausted ourselves. That's when I found out about screening for sensory processing disorder, and thankfully there was someone in our area who specialized in OT for such children.
We were not giving up, we were going to help our son, and even if we had to wait to find out answers, we would fight to find them. Parents, don't give up the fight, keep searching. You are not alone, we get it, and the struggle is real.

Resources:
https://www.amazon.com/Disconnected-Kids-Groundbreaking-Neurological-Disorders/dp/0399535608
An occupational therapy for children with sensory processing/neurodevelopment integration
http://www.susanmcnutt.net/

Trust the Mommy gut

When my son was just 5 months old I noticed his milestones were not being met. Now, I know that every child has a different timeline, a different maturity and different development level, but I had a gut reaction that something wasn't right. He seemed to not be able to use or even activate his muscle control (nor did he seem like he was trying). I tried to brush it off as a mother of 2 that just wanted to love my kids, and not worry so much. But, as the months went by there were more signs that told me my boy was not developing the way he should. At 15mths. he had no language skills (aside from "Ada" his phrase for everything with different intonation. "A...DA! or "AAAA da". "He'll talk eventually, don't worry" my friends stated. "Every child is different" another replied. I couldn't shake it, and now my son was becoming frustrated and without pointing would just scream and cry sitting on the floor (no crawling or walking in sight). We decided to get early intervention involved and he was screened. It was confirmed, he was behind not only in speaking but also in understanding. His comprehension was that of an 8mth. old. He didn't turn for his name, he didn't recognize himself in the mirror and his oral motor was delayed.
Keep in mind, he was still a happy boy for most of the time, he did make eye contact on his own terms and he loved his brother and all the efforts to play with him was received. He just seemed to struggle to eat (shoved food in his mouth, but not properly chew) and drink (biting on cups, straws instead of sucking). He started speech therapy and we realized that his tongue was under developed and under utilized. Once we started exercising his tongue he started to speak (close to 18mths), and after that started to walk. It seemed like he could understand one thing after he had mastered another.
He still struggled to understand, and often screamed when he didn't have the words, but progress was being made. We thought, we have this under control! He is going to be just fine, and honestly, looking back 9 years I wasn't too far off, but a lot of work and therapy has come in between those days and now. He graduated out of speech therapy at almost age 3 and his program would no longer be available to offer services (specially his sensory integration group that provided fun sensory input).
My boy seemed to be doing well, aside from the 2 hour bedtime of massage, joint compression, swinging him stretching him to help him calm down to go to sleep. He didn't sleep through the night, but at least only once into our bed was better than several times.
What I didn't know then, and I do know now is that I would become fully immersed into a world of sensory integration (using sensory things to help my sensory seeking boy feel grounded and safe). I am still learning, but if you are in the same boat and you are in the beginning of your journey my hope is that you will not have to learn these hard lessons I learned when it's too late.
Most importantly-listen to your mommy gut, chances are, you are right, and your little one needs you to fight for them, because they can't.