Month: April 2019

When you have a baby EVERYONE has an opinion on how you should handle them. And they TELL YOU, often whether you want to hear their opinion or not.

They tell you not to let the baby sleep on the stomach. They tell you not to let the baby sleep on the back. The zealous breast feeding patrol comes after you with a vengeance – because if you don’t breast feed you will NEVER have a strong bond (I am two generations into proving this one wrong). You should add an extra layer of clothing when outdoors. Wait – take that extra layer away, the baby will be too hot!

And then they start telling you what you should be doing as a new parent, for yourself.

Go out on a date night, they say. It’ll strengthen your marriage, having had a new baby. Never mind that if you don’t sleep soon you will pass out – you should dress up, go out and RECONNECT with your partner, right now. BUT, don’t leave the baby too soon. They will have separation anxiety. Anxious? Have a glass of wine, it will calm you down. But don’t forget to breast feed!!!

With all of the advice flying around when having a typical child, the pressure to do it “right,” especially with the first baby, can be tremendous. I remember absolutely bawling because my new baby daughter and I could not get breast feeding to work. The breast feeding patrol (all right, the nursing staff and breast feeding specialists but man, are these folks CONVINCED it’s the way to go) worked with us endlessly but the milk just wasn’t coming in and she was starting to actually lose weight in her first 48 hours. I finally switched her to formula and everything worked out just fine. Some people say the bond is not the same but we could not be closer as mother and daughter (same thing happened with me and my mother, by the way). But, I wish someone would have eased my stress by saying it’s not a failure if you can’t make breast feeding work. That formula is OK, too. But no one did.

Moving on in time, I was more than blessed to have a son with special needs. He is now seven years old. And, let me tell you if you want to quiet all of the advice giving and background noise that occurs when you have a typical child, have a child with special needs. Want to really confuse them? Have a child with eight different diagnoses.

For the longest time, all I heard were the proverbial crickets chirping. NO ONE HAD A CLUE.

And then the barage of advice continued, albeit a bit differently.

Instead of sounding confident that their advice was the right thing, their presentation became wary.

“I don’t know if this would work since your child is different, but for my child, this [INSERT ADVICE HERE] worked really well!”

Here’s where both situations have something important in common. They are both background noise in the life that you are creating for yourself. This is NOT to say that advice can’t be valuable or useful. But, especially when living the special needs life, it is extremely important that you CRAFT your life in a way that works for you, your child and your family. People don’t talk about this. CRAFTING your life seems foreign. A whole lot of people live life letting it happen to them. Here’s where you can make a difference for youself.

What kind of life do you want to have? What kind of daily life will make it easier for YOUR particular family situation to not only survive but thrive? Typical families have it far easier in a lot of ways but families with special needs NEED to consider this question carefully.

Do you feel like your daily situation is working for you? Or do you wish your fairy godmother would come in and overhaul everything with a wave of the magic wand?

Or, here’s one a lot of parents can relate to – is there a part of your day that you just dread because EVERY SINGLE DAY it goes wrong and you just can’t bear it anymore? As in, morning is OK, coffee is working, activities go by, everything is fine but you are just DREADING whatever o’clock because almost every single day something happens to set your child with special needs off and you can’t bear the thought of it?

How did I know this about you? Well, let’s just say I’ve been there.

Here’s where CRAFTING your life comes in.

And while the well-wishers mean well and the do-gooders are trying to do good, they don’t really understand, do they? They haven’t walked your walk.

Do yourself a favor. Smile and nod. Tell them that you are SO APPRECIATIVE of their words of wisdom and will definitely take their input into consideration. SMILE. And never think about their input again if you don’t find it valuable.

It is FRUSTRATING when they seem like they know it all about YOUR special needs life, isn’t it? They truly just don’t know. And you have bigger fish to fry than to waste a single second being annoyed at them.

Instead, take that time you would have spent being annoyed and think about this – if you have a specific situation or time period of your day that is JUST NOT WORKING, what can you do to CRAFT it differently? Instead of it happening to you every day, what if you made choices that created a different outcome?

Sometimes this seems impossible. Insurmountable.

It’s not.

I know you are exhausted so creatively problem solving isn’t necessarily your strong suit right now. But you need to do SOMETHING to craft your life because it isn’t going to craft itself. So, try this:

• Focus on a small piece of your day. Maybe it is the waking up process. Maybe it’s the lunch making process if you make lunch for you child to take to school (picky eaters, aren’t they?). Maybe it’s bath time.

• Isolate the problem. Is it that the mornings are crazy rushed and rushing makes your child with special needs crazy? Make lunch, lay out clothes and bathe the night before. Putting shoes on to go to the bus a battle every single day? Let it go, at least for a while. Maybe the two of you can pick out special character “walking to the bus” slippers and send shoes to school in the backpack. How amazing would that be if being creative and a little flexible like that ends a months-long streak of daily meltdowns?

• Make a plan. One that works FOR YOU AND YOUR CHILD. Not necessarily what the people in your life whispering in your ear think would work for THEIR child. They may not agree with how you are going to handle things. They don’t have to. It’s YOUR world.

• Execute the plan. Try it out for a couple of days.

• Evaluate. How did it go? Is it working? Is your stress easing for that particular time of the day? If yes, keep going! If not, try something new. Keep trying something new until it works.

Then, you take this system and apply it to another part of your day. And another. Until soon, you have CRAFTED your life. It applies to every area, too, not just to raising a child with special needs. Of course, there are things that you will have no control over, that you can’t craft. But there are SO MANY things that you CAN craft. Try it. You’ll see.

“They,” are going to tell you what they think about what you are doing. Because EVERYBODY has an opinion.

Everybody does have an opinion. But not everybody’s opinion matters.

Who’s opinion matters? Yours. Is it working for you and your child? Yes? BOOM!!!!

That’s all that matters.

You’ve got this.

In what way have you crafted your life to make it better for you, your child with special needs and your family? Please share in the comments below.

My son is seven years old and has about eight diagnoses. He is low functioning. Kai goes to an all special needs campus. Even though the law states that schools will have the least restrictive environment (LRE) for students with special needs, Kai will never attend regular public school. And this is the right placement for him. He would not be able to function there.

Having a low functioning child is very different than having a medium or high functioning child with special needs. I have always been aware of that. But, recently I have been involved in several discussions where other special needs caregivers are mourning the fact that from a social perspective, their kids are struggling big time. They are not always included. Other kids are not always kind. They are often not invited to birthday parties or when they have them, few to none of the typical students show up.

Their kids are devastated. The caregivers are talking about how they have moved to only inviting family and very close friends to their own events. But there is not much they can do when their children are excluded by others. Their children feel it deeply. They just want to be liked and fit in, like everyone else.

As I listened to these caregivers, my heart truly went out to them. I have ALWAYS been happy for others that have high functioning children. I have thought of this as a gift, a blessing. But in this case, Kai may actually have the edge.

You see, Kai is completely unaware of the entire situation. He doesn’t care if he gets invited to parties. He doesn’t care if he has his own party. Kai’s needs are very simple. He wants to be in an environment where he feels safe. He wants his tablet. He wants a blanket (or several). He wants to eat his chosen foods on demand (which we let him do; after a year of choking at every meal every day to the point of needing intervention, Kai can eat whenever he wants to). He wants loving when he’s in the mood and to dance when our song comes on. He wants alone time when he’s not feeling social. Kai loves going to school and riding the bus. He loves music and singing. Kai is interested in the occasional book. And that’s pretty much it.

If you want to meet someone who is filled with joy, peace and happiness ninety-something percent of the time, come meet Kai. You are welcome to try to interact with him. But you may or may not get acknowledgement. Because Kai isn’t really interested in meeting you. He’s not NOT interested. It just kind of doesn’t matter to him. He’s too busy being Kai.

And, the more I think about it, the more it WOWS me. Kai will never have to worry about not being included. It will never hurt his feelings to hear about a party he wasn’t invited to.

This is maybe the ONE area where low-functioning might just trump high-functioning.

Because in Kai’s world, there is no party. Not unless the party is him.

We were sitting at the dojo, watching our 9 year old daughter test for her green belt in Tae Kwon Do when we got the call. Our son had just had a seizure. He is seven and has special needs. He had never had a seizure before. He had been fine earlier that morning. We had dropped him off at our oldest daughter’s house so that our son-in-law could watch him while we went to the test. No sign of illness. He ate well. He was happy to go into their house and that was it. We went on our way.

I quickly made arrangements for our daughter to be cared for and my husband and I ran outside. We live in a small Texas town but since I’m from New York, running out into traffic to cross the street and get to our van was natural for me. Not so much for the folks driving, but I made it, as in a game of Frogger. We jumped into the car and my husband drove us the six or seven blocks to our son. We hit every light. Every car in front of us dragged. When we pulled into the driveway, I jumped out before the van stopped moving and ran through the front door. Our son was asleep on the couch. We found out that he had been watching his tablet, had looked up at the ceiling and his eyes had rolled back and he had begun shaking. Our son-in-law immediately called us. He said it lasted about 30 seconds. When we tried to wake our son and got no response, I picked him up (not an easy feat, he is 4’4 and weighs over 60 pounds) and carried him to the van. We buckled him in and I told my husband that I was driving. My husband handed me the keys and got in the back with our son. I backed out and floored it.

I drove 95 miles an hour to the emergency room which is usually a 20-30 minute drive away. On a country highway. The hazards were on, I leaned on the horn and I wove my way in and out of traffic like the cab drivers I used to sit behind in New York City. I went up the middle lane. I drove on the shoulder. And I drove like this right up to the door of the emergency room, where I threw the van into park and jumped out. There is a reason why my husband jokingly calls me Mara O. Andretti.

I picked up my still unconscious son and ran into the emergency room while my husband went to park the car. I announced myself to the woman at the desk by stating, “My son had a seizure, we need medical attention, NOW!” She, to her credit, immediately got up and went to get assistance. The door opened and three nurses were already there. They offered a wheelchair and assistance carrying my son. I declined and said, “Just point the way.” I carried him into the room we were assigned, set him, still unconscious, on the bed and it all began.

Because, if you are a special needs caregiver, you know what is about to happen, don’t you?

I started with the opening statement, “Our son has special needs.”

They came back with, “What is his diagnosis?”

And, if you are lucky, yours is short. Ours, however, is not. “The first is PVL.”

They said, “What’s that?”

I said, “Periventricular Leukomalacia.”

They said, “Huh?”

I said, “Right.”

I offered to spell it for them, for which the nurse taking it down was grateful. Then I explained that it was damaged white brain matter.

They said, “Is that it?”

I smirked. “No. He also has Duplicate Chromosome 16.”

She wrote it down.

“And autism.”

She glanced up at me and went back to her writing.

“And apraxia.”

“And Sensory Processing Disorder.”

“And coprophagia.”

“And delays in all developmental areas.”

The woman was scribbling away. I tried to recall if I was finished or not and damned myself once again for not having a copy of this in my wallet, as I do EVERY SINGLE TIME I find myself in this situation. Wouldn’t it be lovely to just hand her a copy? I think so too. Damn.

By this time my husband had entered the room, alarmed eyes searching out his son, his shining star, checking to see if he was OK. He was on the bed, still not conscious. We explained what we knew and the interventions began in earnest.

While he was still unconscious, they put his IV in. This was a good move on their part, a lot simpler. When he came to and my husband could see for himself that our son was OK, I asked him to go back and be with our daughter who was having a milestone event. And her parents ran out with no explanation. Such is the life of a special needs family (by the way, we explained later, and she was AWESOME about it, as usual, her only concern being her brother).

My son regained consciousness and, not surprisingly, couldn’t and/or wouldn’t follow their directions. I had to help. They wanted to look in his nose and I had to hold his head and force it since when others do it, he invariably escapes. They wanted to look in his throat. I have lots of practice at this. I slid my fingers into his mouth on the outside of his teeth and pushed down on his jaw, forcing his mouth open. Only, this time my angle is off because of the crowd of people and how I am standing. So my finger gets in the way and, of course, my son bites down. It hurts like hell until I get resituated. My fault. Bad angle. They checked his throat and my hand was freed.

They discover that my son has a fever of 102.9. And a bad ear infection. This morning, his ears were a normal color and his skin felt cool. It happened in the blink of an eye. After a fun event of getting my son in position for a chest x-ray, we discovered that his chest was clear. No flu, no strep. No evil childhood diseases like measles or chicken pox (yes, he is vaccinated, and, AS A SPECIAL NEEDS PARENT, I WOULD DO IT AGAIN, but that is another story for another day).

So the doctor thinks that the fast spike in fever caused the seizure.

He may be right.

But he may be wrong.

The doctor is an expert in what he knows. He knows general medicine. He knows emergency room situations. He has experience with children who have seizures because of fast rising temperatures.

I am an expert on my son. And, I have greater knowledge of Periventricular Leukomalacia than the doctor does, as evidenced when he heard the term and gave me the common deer in the headlights expression that means, ‘What the heck is that?’

So, what do I and my husband know that he doesn’t? That PVL is linked to cerebral palsy, and, yes, to seizures. That we have to watch him closely pretty much forever, because seizures could occur at any time. He hadn’t had one before today. And yes, it coincided with the quick rising fever. But this saga isn’t over yet.

Because, while we are grateful that our son got excellent care, quick intervention and medication to address the situation, we need to go back to the neurologist. Our son needs another EEG to determine if there is abnormal seizure activity occuring in his brain.

Has it begun, then? Or do we get a pass this time? The seizure definitely happened but what was the cause? Fever? Or PVL?

I call the pediatrician’s office right from his bedside to leave a message (it’s Saturday) explaining that I need a referral to a neurologist ASAP first thing Monday morning. After a snarky answering service rep doesn’t want to do her job and I put her in her place I Ieave a message that I know may never get there after our less than stellar interaction. I need a new neurologist because we moved last year and don’t have one near our new home.

And the beat goes on.

My husband returned, having dropped our daughter off with relatives. Our son has received his first round of antibiotics via IV and it is time to get him dressed and take him home. We have our instructions to stay up throughtout the night, making sure he has medication every three hours for the first 24 hours so there is no chance of a quick spiking fever returning, risking another seizure. If that’s what caused it. We are exhausted and beyond grateful that all we have to do is stay up on and off all night after this event.

We are hopeful that the seizure was caused by the fever and not the PVL. We will be GRATEFUL if this is the case. And if not, we will be GRATEFUL that we still have our son with us. Seizures or not.

It is just another day when you are living the special needs life.

When we are in public, sometimes if my son, who is seven and special needs, is sitting quietly, it may take a few minutes for others to realize he is different. But then he will start rocking or making one of his enthusiastic noises or throat punching and people will suddenly pick up on it. Often they look at him while trying not to let me or my husband see that they are looking. They try to figure him out. And frequently, they back away. You can see the fear in their eyes. They don’t know how to handle the situation. They don’t know if they should talk to us or not. They don’t want to say the wrong thing. They feel awkward.

But you know who doesn’t feel awkward? Their kids.

Neurotypical kids in public are fascinating when they see my son. They tend to openly stare. They watch him, trying to figure out what’s different. I have seen them tilt their heads to the side, studying him, wondering why he is in a stroller when he is obviously not a baby. Or why he is eating baby food out of a container with a spoon while I sometimes hold it so the container doesn’t slide and fall to the ground. Yet my son is often physically bigger than they are. The neurotypical kids are trying to reconcile what they see with what they know.

And they are not afraid to ask.

You want to see mortification? Watch a parent who is inexperienced with special needs kids react when their neurotypical kid comes up to me and asks, point blank, “Why is he DOING that?”

I absolutely LOVE IT when this happens.

Not because of the parent’s discomfort. I wouldn’t wish discomfort on anyone. But because there is no reason to be afraid. My son LOOKS DIFFERENT. It is natural to be curious about this. I WANT people to meet my son. To get over the fear of what is different.

The worst part is when the parent tries to shush their child and looks embarrassed. I always comfort them and say something like, “No, it is WONDERFUL that your child asked! My son looks different. How smart of your child to notice. Come meet him!” I explain to the child that my son has a special brain and so he does things a little differently than everyone else. And that, even though he is just learning to talk and won’t yet say so, he is happy to meet you.

The child then usually comes right over and looks my son over carefully. They sometimes sit down next to him and try to see what he is watching on his tablet. Occasionally, they attempt to hold his hand and smile at him.

And the parent usually holds onto that strained smile, like, if the floor would crack open and create a huge hole, they would jump in without hesitation, just for this to be over.

I understand the parent’s reactions, truly I do. But think about this – they are the models for the next generation who is learning how to respond when they see a special needs child. And they, most likely inadvertently, but still, are teaching them fear and discomfort.

So it falls to us, the special needs caregivers, to be the educators (yes, I know, you don’t have enough to do). Because every time we invite neurotypical children and their families to meet our child we teach them to overcome their fear. We teach them to accept differences. We teach them what love really means.

The next time you are in public and you see ANYONE (OK, not if it’s in a creepy way)eyeballing your child with interest, invite them to come in for a closer look. Teach them. Educate them. Because, one by one, you are changing the world for your child. And for you.

On this journey living the special needs life, you may have already discovered that it is worth your while to invest more in the people in your life than you did before. Not only close family and friends but also the incredible people that work with your child on a daily basis.

If you haven’t discovered the power of investing in people yet, or you are afraid to do so because people don’t seem to invest as much in you, a shift in thought and a reframing of how you look at investing in people may be in order.

Perhaps in the past you have invested some time in relationships with teachers, staff and doctors the way most people do. Maybe you thanked them for a job well done. Maybe you gave them a gift around the holidays. And, for most people, that is pretty much it. The same goes for family and friends. You may also have given a lot more than others have given to you and then felt short-changed when you didn’t receive with the intensity that you gave.

There is a trick to this investing in people. You must invest without expectations. This doesn’t mean that you will get nothing in return. It means that you cannot decide what the something in return will be. And this can be hard. You may feel as though you give and give and give and get nothing. But the best thing that you get will not come from them. Ultimately, it will come from you.

By letting the people around you, both personal and professional relationships, know how much you value them, you do both them and yourself (and your child with special needs) a service. First, you make the people around you feel valued. It is important when you tell people how much you value them that you only speak the truth. Find the reasons why these people are important to you (and if they are amazing, as many of them are, this should be easy to do). Then, here’s the part that most people don’t think to do – TELL THEM. You can tell them how amazing they are to their faces, write them a letter or a card or give them a gift, but LET THEM KNOW. When was the last time someone told you? Right. It’s been a long time, hasn’t it? Because PEOPLE DON’T THINK TO DO THIS. So, when you do it, you stand out. It’s special.

Second, the reward you receive in return comes back to you in many ways. Just telling other people that you value them creates feel-good energy in the air, which you will also feel. Also, people who like you tend to put forth more for you. Don’t you always give more to the people that you like? That make you feel good? Even if they are just more cheerful to see you than usual after you share how valuable you feel that they are, that in itself is a gift. Especially when you are having a hard time when living the special needs life.

Finally, your child with special needs reaps the benefits of positive, feel-good interactions that you have with teachers and caregivers. As a former teacher of fifteen years, I have seen over and over again the bonds that teachers and families have formed just from the families reaching out with positive things to say to the teachers.

Living the special needs life can be exhausting. It can leave you with little time or energy to be creative. Here are some simple examples of how you can invest in the people around you:

• Pull aside someone in your life and tell them something brief, like, “I just want to tell you how incredible you are with my child and how grateful I am that you are in our lives. You make such a difference to us.”
• Offer a small gift and say or write, “If I had a million dollars to give you it wouldn’t be nearly enough because you are worth so much more to us. Thank you for just being you.”
• Going to an ARD? Bring Hershey Kisses and Hugs and scatter them across the meeting table when you first get there. Tell the group, “We’ve brought you kisses and hugs to let you know how much you mean to us. We are so grateful for everything that you do!” Teachers LOVE chocolate at meetings – this is the best five bucks you can spend for a meeting!
• Tell the person’s manager or higher up how amazing they are, in writing. This takes all of five minutes in a quick e-mail. Write about a specific thing that this person did that you loved. And when you send it off, make sure that it is cc’d to the person that you wrote about.

There are so many other ways to show your appreciation on a regular basis – the above ideas will just get you started. Ultimately, doing something quick, easy and direct is probably your best bet, especially if you are exhausted and overwhelmed. Take the extra few minutes to do this. I promise you that your ROI – Return On Investment – will be worth it.

As a former teacher one of the things that I have heard over and over again is how intimidating it can be for parents to meet with teachers and school staff. I have also heard that these same parents can find doctor’s visits, therapy visits and pretty much any visit with knowledgeable professionals intimidating. It is even more true for parents whose first language is not English, as I heard many times when I taught Adult ESL classes. But, it seems, ALL parents have trepidations, fears, when it comes to these meetings.

You worry that you are not smart enough. You worry that you are not educated enough. You worry that you aren’t going to agree with what the ARD committee wants to do for your child’s IEP (Individualized Education Program). And you go into the room where the meeting is to be held and a whole bunch of “professionals” with official looking name badges on look up at YOU. And you worry that whatever it is that they are expecting, you won’t be able to meet their expectations.

These people will hand you a booklet with pages and pages of your “rights.” They will ask you to sign a paper that says that they gave them to you but they will spend little to no time explaining what your rights are. And then they will launch into a discussion of your child. And they will use educational jargon, endless acronyms and their format of discussion to get the job done and process what they need to legally so that your child’s IEP is updated to the standards that are required by law. Confused? Intimidated? Completely lost? You are not alone.

Having sat on both sides of the IEP table, as a parent and as a teacher, I want to share with you some valuable information that will get you through.

You WANT your ARD team to be well-informed, smart intellectuals – people who not only know the ins and outs of the laws and what services are available but how best to apply them to your child’s specific needs. Where it can begin to get intimidating is when these intellectual people forget their place in your world – which is to be a rich resource for you and your child. In a way that you can understand. So that you can apply the information that they give you.

If you feel that a team member is looking down upon you for being less knowledgeable or less educated, the problem is not you, it is THEM. It is THEIR JOB to make you feel comfortable, to translate educational jargon and acronyms and to ensure that you understand everything and are in agreement. If they are not giving you credit for your superior knowledge as the expert on your child, if they are making you feel dumb for asking questions or asking for clarification, they have moved from intellectual to INTELLECTUAL BULLY. And you have the right to put them in their place.

Please note that this right will not show up on your list of rights in the packet that you signed off that you received. It is your right nonetheless.

But before you put them in their place, please take the time to examine what you think their motivation is. I have sat in on HUNDREDS of ARDS. And rarely is there an intellectual in the group that is making you feel less than on purpose. I am not saying they don’t exist. I have met a couple. But most of the time, these folks really want what is best for your child. They just forget sometimes that parents don’t always understand the technical terms, the jargon, the acronyms.

So, please, please, please don’t hesitate to ask when you don’t understand something.

I have a Master’s Degree in education, 15 years of general education teaching experience, am certified in general education, special education and ESL and am what is called a highly qualified teacher. Ya’ll, sometimes I have no clue what they’re talking about.

If you think that it is a sign of weakness to ask for a definition, a clarification or to just straight up tell them that you have no idea what they are talking about, you are wrong. IT IS A SIGN OF STRENGTH TO ASK QUESTIONS TO GAIN UNDERSTANDING. IT IS ALSO A SIGN OF INTELLECTUAL INTELLIGENCE. I mean, come on! How are you ever gonna know unless you ask? This is not a moment where you should “fake it ’til you make it.” Your child’s future is at stake. Make sure that they take the time to explain themselves in a way that you can understand.

Recently, I was sitting at an ARD as a parent, discussing my son. Some of the team was present in the room, and, because I live out in the country, some were on speaker phone at another location. One of the “experts,” was trying to explain something to me about occupational therapy and my son. She used a term that I had never heard before. I asked for a definition. She said that it was exactly the same as another term that I did understand, a synonym. That didn’t sound right to me. I jotted down the word and made a face and showed it to another expert in the room I was sitting in. She Googled the term and turned her computer screen to face me. The “expert” was wrong about the definition of the term.

See, even “intellectuals” are not infallible. They, too, make mistakes.

Ask. Ask, ask, ask.

Going to the doctor? Doctors have a broad base knowledge of medicine, illnesses and disorders. But I’m telling you now, however much they know, they have no idea how your child’s diagnosis affects them as an individual. You know who knows this information? YOU. YOU are the expert in this. And, sometimes, your child may even have a diagnosis that the doctor has never heard of. This happens to us all the time. Periventricular leukomalacia, amongst other things. Anyone know what this is? Anyone? Yeah, most of the doctors we meet don’t know either. That’s OK. They soon look it up and figure it out. But they don’t always understand what our son needs. So sometimes we have to switch doctors until we find one that does. You can do this too. Keep switching until you find that one jewel. Yes, it’s a pain to keep switching but the reward of finding someone who understands is priceless.

Same thing with therapists. They have broad knowledge and experience in their field but they have NO IDEA how your individual child is affected by their diagnoses. YOU DO. You are PARTNERS in this endeavor. Many, many therapists understand this. If you happen to get one that doesn’t or doesn’t want to take the time to explain to you what the heck they are talking about, guess what? Say goodbye. You have the right to ask for someone else. This may or may not be in the handouts that tell you your rights but I’m telling you, you do.

It is not my intention to devalue the intellectuals that you are accessing for assistance for your child, yourself and your family. In fact, quite the opposite. What would we do without these people, these angels who often make our lives easier? Most of them are amazing.

Just remember – don’t fear the angels. They are your partners, not your superiors.

It is April and like your child who turned seven recently, my son is in the first grade. But, maybe unlike your child, my son has special needs. He attends an all special needs campus because he is low functioning.

While your child is finishing up the last 10-12 weeks of first grade mastering learning to read words with long vowels like “cake,” my son has only been able to eat cake for a couple of years without choking on it.

Your child can play on the playground largely unattended. My son still needs to be shadowed.

Your child can hold an entire conversation with you. You can discuss how his or her day was. My son has a special report that comes home with him that I created. I needed to create this report because without it, I had no idea what he did all day. My son has been in the “just beginning to talk,” stage for the last couple of years. When I ask how his day was, he smiles at me, takes me by the hand and then shoves my hand in the direction of the thing he wants me to get for him.

And yet…

We, as parents, have so much in common.

While you are proud of your child’s accomplishments, I am too. The actual accomplishments our children are achieving at this age, the same age, are vastly different, but the pride is the same.

As you watch your child sleep at night and admire how beautiful they are and think of who in the family they most resemble, I do, too.

When you are amazed when you see that your child is understanding ever more complex concepts, the same thing is happening for me.

We are not so different, you and I.

Our children may be having vastly different experiences, but some things are exactly the same.

Your child is finishing up the first grade in the next couple of months. They may have just mastered addition and writing complete paragraphs.

Guess what? My son put on his own shoes today for the first time.

And, for you and me, all is right in our world.