Author: Mara

When you take a special needs child to see a specialist such as a neurologist or a therapist in their offices, usually those professionals know what such a trip entails and how to handle it. However, I have found that a trip to the good old, regular MD is another kind of visit. Unless that doctor is also a specialist, they are used to seeing neurotypical kids. It’s probably not their first rodeo, but neurotypical is what they see, day in and day out. And so, sometimes the staff seems similar to a deer in the headlights. You can see it on their faces – oh, this is different.

This is OK. In fact, if I look at this as an opportunity, it is possible for me to educate them to make a smoother visit.

My youngest child is my son, Kai, who is six years old and has special needs. Kai has PVL, Duplicate Chromosome 16, Autism, SPD and more.

How have I simplified the process of taking Kai to the doctor? Here are eleven steps that make that process easier.

1. I schedule for either the first appointment of the day or the first appointment after the lunch break.

Waiting is very difficult for Kai. The shortest wait time yields the best results.

2.  I write a list of what I need to bring and follow the list as I am getting ready.

When we travel with Kai, he sits in a car seat with a blanket. He still has a diaper bag. His diaper bag has the following items in it: diapers, wipes, bottle, changes of clothes, tablet, hotspot, cookies, toys, Wal-Mart bags for poopy diapers, straws in case he needs to drink something not from the sippy cup (which he will only use for milk), plastic spoons, baby food. Making sure that everything is replenished and ready to go helps me to smooth the way for him. Also, if I think that it won’t be a meal time so I won’t need his food, I am not planning ahead. I just never know how long some things take and I have learned that bringing it no matter what is the best strategy.

Kai will have a significantly better visit if I bring his tablet. I now always bring a hotspot as well. I have gotten into trouble before assuming that places have Wifi.

If Kai has to wait anywhere for more than 3 minutes without a tablet to distract him, he will start to fuss. If we have no tablet, I sing to him for about a half hour, which may keep him more or less occupied. I sing in front of anyone and everyone. We’d have another few minutes of eating cookies (vanilla wafers, Wal-Mart brand, no hydrogenated oils). And that will be all he can tolerate, if that long. A visit of an hour would be too much. He would meltdown. He would pull on my hand in his you-need-to-get-up-and-we-need-to-leave gesture. He would throw himself on the floor. He would cry. He would hit himself. With a tablet, we can wait much longer. Yes, I know that too much tablet time is bad. But I also know that I need to do what I have to do sometimes to make life work for me.

3.  I bring a partner if a partner is available and if I think it will help.

If Kai’s dad is available, he always comes with us to the doctor. But because we also have an 8 year old, if we have no care for her, they will stay at home together. We have learned that it is easier when only Kai has to be entertained and distracted. If Kai’s dad is there, as soon as the exam is over, Kai and Daddy can leave. They can go for a walk through the clinic, go outside or go to the car. And I can finish out the waiting time for instructions and prescriptions without forcing Kai to sit through that as well.

4.  I tell the staff what they need to know.

In the past, when Kai has had to visit the doctor, the staff has tried to talk to him. He doesn’t answer them. He is mostly non-verbal, just starting to talk. He can say, “Hi,” if he chooses to when prompted. I tell them immediately that he has special needs (although if the staff isn’t frantic, they usually notice). I have always had to explain what PVL (periventricular leukomalacia) is and about all of his other diagnoses. Duplicate Chromosome 16 also trips them up. The staff is always a little embarrassed that they don’t know what these are and I always comfort them, saying something like, “No one ever knows what they are. Even doctors don’t know. Don’t worry about it.” If I am really on top of my game, I will bring written information on his diagnoses for them to keep in his file.

5.  I have the staff tell me what they want to do and then I tell them the best way to do it with my son. They are the experts in medical care. I am the expert when it comes to my son.

Kai won’t follow directions the way a neurotypical child does at the doctor. From the very beginning of the visit, I tell the staff that if they explain to me what they want to do, I can help them with Kai. If they want to look in Kai’s throat, I have to run my thumb and forefinger around his teeth in his mouth and exert pressure down on his jaw to open it so they can look. I almost never get bitten anymore. When they want to weigh him I have to talk him through getting on the scale. “OK,” I’ll say, “Put your hand on this handle. Now step up with your foot.” Long wait. “Step up, Kai.” Then, sometimes I have to help him put one foot and then the other on the scale. He may or may not stand still long enough to get weighed. Same for height. He doesn’t like getting his blood pressure taken, having his ears looked in or having the stethescope on his chest. I tell the staff that if they can get what they want, great, and if they can’t, we will just have to let it go. I do everything possible to help them, but if Kai doesn’t want to get his blood pressure taken after we attempt it a couple of times, they will just have to live without this information.

6.  I ask for help.

Depending on what Kai has to go through, I have to be creative to get him to cooperate. He is not interested in their stickers. A lollipop means nothing to him. The last time he needed a blood draw, the staff asked me how I would like to handle it. I asked for help. We needed three people to make it happen. I’m sure they thought I was nuts, but I had Kai lay down on the examining table and I CRAWLED ON TOP OF HIM AND PINNED HIM DOWN. I then sang into his ear the entire time. A nurse stood by his head and tried to relax him and another nurse held down his arm and did the blood draw. I warned everyone to stay clear of his legs because his kick is extremely powerful. This worked. Then I signed and said, “All done,” the way we do. We have had x-rays of his lungs in the past. I have to put the drape on when he puts his on. We do it together. I try to hold him still. I have asked for help doing this as well. It takes many, many tries.

I am also not afraid to ask the staff to speak up or repeat themselves. Kai is often fussing in my ear in this setting. I can’t hear them talking but I know I need the information, so I let them know.

7.  I walk away.

Sometimes, the visit is just not going to go well. This is just a fact of living the special needs life. If we get there and Kai has a huge meltdown or the doctor is running late or there is something about a staff member that we are dealing with that aggravates Kai, I am OK with walking out. This is a last resort, but I’ve done it. I am Kai’s advocate before anything else.

8.  I reschedule.

I know when Kai is having a bad day. It doesn’t happen often, he’s usually a very happy kid. But, just like a neurotypical kid, Kai has bad days. This is not a day to take him to the doctor. If, on appointment day, I can already tell that it is going to be extremely rough before we even leave the house, I will reschedule. Why subject either of us to that when I don’t have to?

9.  I speak up.

If the staff is intent on getting information and Kai is truly becoming aggravated, I give them opportunity but I also know when to cut them off. I do this kindly but firmly. Kai hates having that thing put on his finger that takes his heart rate and shows how oxygen saturated his breathing is. I let the staff know in advance that if they can get the information, great, but there is a limit to what I am willing to put Kai through. Unless it is directly related to illness, there is no reason to let Kai become excessively agitated. I won’t let that happen. The staff doesn’t always love me for that. That’s OK. It’s not my job for them to love me, it is my job to take care of my son.

If we have to wait for prescriptions and instructions for Kai, I will request as the staff leaves the room that they expedite this as quickly as possible. And, as I said before, if Kai’s Dad is there, they leave and I wait. But if he’s not, by this point in the visit, the staff knows why they need to move things along. When Kai and I leave an examining room, it is usually covered in cookie crumbs, athough I try to pick up the big chunks of cookie. Packing up to leave is like packing to go on vacation except there is no relaxation coming when we get there. There are probably used wipes around. Kai has learned to shred the paper that is spread out on an exam table so there is that mess too. Invariably, he has taken his shoes and socks off and so those need to be put back on. The cookies and toys and hotspot and tablet go back in the diaper bag, along with any changes of clothes. The entire time I am packing back up, Kai is usually yanking on me to leave. He wants to go home and be in his safe place. His diaper bag is a backpack. I put my crossbody purse on first, then both backpack straps go over my shoulders. Once I am loaded down like I am going hiking, I take Kai by the hand and we go. The staff usually makes an effort to move things along, but if they aren’t moving fast enough, Kai and I leave the exam room and walk up and down the hall, past the desk area where prescriptions and instructions are worked on. He is usually loud and fussy by this point and they seem to work faster under this (subtle!) pressure. This is how Kai speaks up too!

10.  I get it in writing.

I am so distracted when we are at the Doctor’s office that I often have no idea what they’ve said to me when giving me prescriptions. By the time I get Kai to the car, that information has disappeared from my brain. I ask that everything be written down. This way, if I forget (and I will), I have something to refer to.

11.  I thank them endlessly. I tell them how wonderful they are.

You have never seen a more grateful person than me when I take Kai to the doctor’s office. Compliments? I give them endlessly. Feel goods? I hand them out like candy. Phrases like, “Thank you! You are wonderful!” and, “We are so grateful,” fall from my lips repeatedly. I don’t say them if they aren’t true! But if they are, I say them often. This greases the wheels, gets what Kai needs and leaves everyone feeling good when the visit is over. It costs me nothing, and yields me so much.

What are some of your strategies at the doctor’s office? Please share in the comments below.

In the hectic world of special needs caregiving, I often have a monologue running in my head of all of the things I “should” be doing. I should be doing more. I should be doing better. I should be doing that differently. I should have spoken up. I should purchase that developmental toy. I should make a list of things that I want to accomplish. I should make a list of things that I want my child to accomplish. I should be a stay at home parent. I should get a job so that we can have more money. I should start a home business to make money while being a stay at home parent.

I should clean even though I am exhausted. I should do laundry. I should buy more back-zip pajamas so that my son doesn’t get into his diaper to “play.” I should wash the pajamas we have. I should call the doctor. I should call the dentist. I should give my son a longer bath so that we can work on writing with bathtub crayons. I should read my kids more books. I should cook something that doesn’t use the microwave.

I should locate a sippy cup that doesn’t have the softer nipples that we keep having to replace by mail order because my son bites through them. I should buy one of each kind of cup and keep attempting even though I know my son will reject all of them (he already has) and the money will be wasted because even though he needs those reintroductions, let’s face it, right now it’s not happening.

I should let them have less screen time. I should nap less. I should nap more. I should attempt to make myself more presentable. I should shower. I should check their backpacks more. I should write another note to the physical therapist about my son’s toe walking and the connection between PVL and cerebral palsy.

I am “shoulding” on myself. It is a never ending thought process of everything that I should be doing and doing better. Every perceived deficit that I have is covered when I should on myself. And every way I imagine that I am failing my special needs son (I “should” call him my son with special needs… no wait, my special needs son… I “should” go back and reread that article).

It seems that no one is harder on me than me.

It is very difficult to get out of this pattern of “shoulding,” considering the fact that I “should” be getting stuff done. So I have come up with a couple of tactics that I “should” try to alleviate my “shoulding” on myself.

I “should” make a list of everything that I accomplish on a daily, weekly, monthly and yearly basis. I “should” stop and look around and see if my family seems content. In fact, I just paused and looked up at my family and they are all happily content, right this second. I “should” think about if my special needs son (“son with special needs?” I really “should” reread that article) is making progress at all in any area whatsoever (he is). I “should” think about the fact that what I have right now is something that I desperately wanted 20 years ago and how blessed I am to have it. I “should” realize that even though it doesn’t look like I imagined that it would, it is AWESOME.

I should take a break from shoulding on myself. But I won’t. It is the cornerstone of special needs parenting.

So, instead, maybe I should be kinder to myself and remember all that I have accomplished.

Yeah, I should do that.

Do you should on yourself? How do you give yourself a break from it? Please share in the comments.

It is said that raising a special needs child is hard on a marriage. The level of stress can be extremely high. The focus tends to be always on your child. But, with some planning, the process can actually strengthen your bond. Here are ten ideas to consider.

1. Make an intervention plan according to your strengths or what you feel comfortable with.

When one of our children throws up (typical or atypical), my husband and I attack the situation from two different directions. There is no discussion at all at this point after so many years. I don’t like cleaning up the mess but I don’t mind cleaning up our child at all. My husband doesn’t like to clean up the child but doesn’t mind cleaning up the mess. When we discovered our preferences, we realized that together, we could conquer the problem quickly. What repeated situations are tripping you up as a couple? Discuss together what parts of the situation you feel competent handling and what parts you don’t. You may be able to break it down by taking turns, assigning different sections of the task or another solution that makes sense to you.

2.  Have a safe word.

You know when you are JUST DONE? Maybe your child has been having a meltdown for an hour or two or ten. Maybe they are asking the same question over and over until you want to just explode. If it is getting intense and you need a break, instead of having to scream out to your partner in frustration (I just can’t handle one more second of what she’s doing!), have a safe word. Make it a word that makes no sense in the course of daily life like “banana split,” or perhaps say the date of your wedding anniversary. When you plan in advance between you that if you say this it is an alert to your partner that you… just… can’t… go… one… more… minute… your partner’s roll is to jump in and give you a break. You may want to set a predetermined time period. Or maybe not. The two of you can decide what will happen next. But decide this in advance – not in the middle of the stressful event.

3.  Give each other respite.

It would be so nice to be able to spend alone time together. But if that is just not happening, TAKE TURNS. Caregiving can be exhausting. Plan in advance so that you both get the respite you need.

4.  Listen to and validate each other’s grief. You may be grieving at different rates or intervals.

I know one couple where the wife is totally fine with her son’s special needs and has little to no issue about “who he could have been.” The husband, on the other hand, is struggling. He had visions of them throwing a ball around together, hunting and fishing together and doing all kinds of things that typical Dads and sons might do. It is very hard on him. It doesn’t mean he doesn’t love his son but his vision of what could have been is still very strong. Validating your partner’s feelings about this, acknowledging their grief, is extremely important. And this grief may come in cycles. Please remember, just because it doesn’t affect you the same way, doesn’t mean your partner’s grief isn’t valid. If it seems like the grief is deepening over time and affecting the parent/child relationship, seeking grief counseling could support not only this process but the health of your marriage.

5.  Don’t forget to celebrate your marriage.

Every little accomplishment your special needs child makes is cause for celebration. You already know this and need no reminder. Don’t forget to celebrate your marriage as well. Your wedding anniversary, the anniversary of when you first met, monthly acknowledgments of special dates all should be remembered and noted. Special needs parents have a tendency to let these things fall by the wayside. Maybe you don’t have the time/energy/money/child care to go out to celebrate – that’s OK. Just saying that you remember and pausing for a moment together can be special.

6.  List what is important for your child in terms of mandatory, very highly needed, moderately needed, like it but could live without it and could live without it.

Cut down your list. For everything. If you can do without certain appointments, let them go. Start saying no unless it is mandatory or very highly needed for your child. Free up some time here and there. Rotate therapies so that you aren’t going 5 days a week, if you can. Maybe 4 weeks on and then switch to something else for 4 weeks? Only if it works for your child. If you need time to breathe, take it. It will be OK. When you have absolutely nothing left within yourself, you have nothing to give. And that goes for you marriage AND your special needs child.

7.  Talk about your needs, your wishes and your dreams. See if you can make some of them happen, together.

Especially at first diagnosis, special needs parents are so caught up in what their child needs that their own needs fall by the wayside. Often, parents never feel that they can come back to focusing on anything for themselves. They feel guilty. They feel like they are the last priority on a never ending list. But there is no point in living if you are unable to experience life. The way you do things may look vastly different than you thought things would look, but you can still do them. Discuss it. Think outside the box.

8.  Reaffirm your love often.

My husband and I used to get remarried every Thursday. We are the only ones who would attend. One of us would conduct the ceremony, we would both say our I do’s and we would then kiss to seal the deal. Not your thing? Make your own rituals as a couple. It doesn’t have to involve money or going out. A couple of minutes is all it takes.

9.  Know that marriage, like life, is cyclical.

There are going to be times when you are a well oiled machine. There are going to be other times when you wonder who the heck this person is. Some days you will realize that you may be on the same page but in two different books. Marriage is cyclical. You have upward cycles and downward cycles. Usually, if you are patient, it cycles around again.

10.  Know that raising a special needs child, like marriage and life, is cyclical.

Sometimes you will feel like your team has it covered. Sometimes you will feel like it is getting out of control. This is all normal. It’s not always going to go perfectly. And that is OK.

Consistence and persistence beats resistance. The more you plan and function together as a team, the less stress you will have. Say hello to a stronger marriage!

What do you and your partner do to strengthen your marriage as you parent your special needs child? Please share in the comments below.

I was having a conversation recently with someone who said that there are very few special needs divisions in life. His stance was that there should not be a special needs division in a karate tournament. That teaching those less able to achieve, in his mind, was a less pure practice if they couldn’t get it exactly right (or even close). He felt that it is a mockery of what karate is supposed to be. He is certainly entitled to his opinion.

Here is mine.

When a child is born, the process of enculturation begins. This simply means that the child is taught what society accepts as “normal” in practice and procedure. It is the close family members and people who raise the child that impart most of this information. After a while, the outside world begins to present itself to the child. As different views and practices are presented, the process of acculturation begins. Again, this simply means that new and different cultural norms are presented. Here, people learn new values, rules and procedures that other social groups may be practicing. As a child begins to compare what he or she has learned through the enculturation process with the new concepts of the acculturation process, the child may begin to blend socially accepted practices. What does this mean? It means the child, as they grow and become more aware, forms his or her thoughts about what is acceptable in the world. Of how it is and how it should be. A very strong beginning from the family in terms of what they are capable of (positive or negative) usually prevails.

In other words, YOU, as the special needs caregiver are one of the strongest voices in your child’s internal dialog of what they can do. If you tell your child that there is nothing they can’t accomplish, they will most likely believe it. If YOU show them that their process may look different and their outcome may be different than other people’s, but it is no less valid, they will internalize this. Later, when others tell them that they “can’t,”(or that they will never be good enough to matter) they may falter, but they will remember their first enculturation process – and again, that came from YOU. They will rely on this inner voice (that YOU have given them) to move forward.

It doesn’t matter if their achievements don’t look as mighty to others. It doesn’t matter if what their trying to accomplish is less “pure” than how other people do it. What matters is that our children have high expectations of themselves and what they will succeed at, whatever that looks like.

Do you know who doesn’t understand this? People who don’t have to work as hard. It is so easy for people with typical brains to follow the instructions, put in the time and practice and succeed if they want to. It is so easy for them as children to watch an adult pick up a cup and just copy them. It doesn’t occur to those people what it would be like to have to think through every single tiny step of the process and practice, hand over hand for about 200 repetitions to lock in that motion because their brain just doesn’t work that way.

When a child is willing to follow their internal dialogue (which YOU have given them) that they are warriors, that they are smart, that they can do anything, that they can succeed- and then practice over TWO HUNDRED times to be able to pick up a cup, are we to denounce this achievement because the water spilled?

In a life where “there are very few special needs divisions,” it is our job, as their first teachers and as we lead our children through the enculturation process, to create them. We should demand of our special needs children their very best. We should accept no less than success, whatever that looks like for them. And, as we are the ones who shape society, well, society needs to bend quite a bit.

I have expectations of excellence, for my son and for the society that he is a member of. And believe me, both will rise up to meet the occasion.

My son, as he is, is enough. Isn’t your child with special needs enough?

Please share your special needs child’s amazing achievements in the comments below.

Our son, Kai, is 6 years old and special needs. When he was about two years old we very briefly put him into a daycare where I worked. Kai is nonverbal, Autistic and has PVL (periventricular leukomalacia), SPD, Duplicate Chromosome 16 and more. At this time he was beginning to slap himself in the head. At the daycare, Kai was assaulted.

There was a boy who was about four years old that had lots of anger issues. He approached Kai and spoke to him. Kai, of course, didn’t respond. The boy became angry that Kai was ignoring him and he choked him. This happened TWICE in two days.

Right after this, I left the daycare (which was only temporary for me, anyway) and withdrew Kai. The daycare did not handle the situation well at all but that is another story for another time. Unfortunately, this experience had Kai switching from head slapping to throat punching, which he had never done before.

It is four years later and Kai continues to throat punch and, occasionally, slap his head. If you don’t know that it’s coming, when he punches himself in the throat it can be very alarming. It is quick and sometimes hard. He is not hurting himself internally (we had an ear, nose and throat doctor check) but he sometimes has a bruise at the center of his throat. He never tries to throat punch or head slap someone else.

So, why is this happening?

There are many reasons why this could be happening. These include sensory processing (under or over stimulation in the brain), pain in the ear or mouth, attention seeking, frustration and more. Take a look at this excellent article for more information:

https://www.autismparentingmagazine.com/a-head-banging-solution/

The article offers several solutions to attempt to stop head banging, and for us, throat punching, which is a similar event. One of the solutions that has been having a positive effect lately is using vibration.

Kai is not seeking attention when he head slaps or throat punches (your child might be, it is different for everyone). He has been checked and is not having ear or mouth pain. He occasionally will do it when frustrated but not often. It appears that in Kai’s case, he needs more, or different, sensory input.

We have tried tapping up and down his arms but this seems to encourage the behavior. A therapist demonstrated doing joint compression as a possible solution, but, again, no effect, or it made it worse. But recently we discovered that Kai responds well to using a vibrating back massager. When he is head slapping, throat punching, upset, or appears to be about to go into a meltdown, we calmly turn on the massager and hold it out so he can touch it with his hand. This calms him almost instantly. We then use it on the top of his head, his forehead and up and down his arms and shoulders. So far, it seems to give him what he needs.

To be clear, we are not worried about what other people think when Kai is stimming in this way. We are more concerned about him getting injured over time. Kai is growing and getting stronger. By distracting him from this behavior and still giving him the input that he needs, we can reduce the possibility of injury. Win-win.

What strategies do you use with your special needs child to distract from self harm? Please discuss in the comments below.

As the New Year approaches, I am beginning to reflect on how the past year went and to start to create goals for the coming year. These are my ten resolutions as a special needs caregiver.

1. I will make a special needs trust.
   This is a top priority and one that I have already started to read up on. I would like to think that I can live forever and take care of my son, but I know it’s not going to happen that way. Even if money is tight, by establishing a trust using a qualified expert in this field, I am taking steps to protect his future. By the way, I am a big do-it-yourself person but not when it comes to this. This needs to be airtight. I’ll skimp on other things to make this happen.
2. I will make a will.
   Hand in hand with the special needs trust, I will also make a will. I am not leaving it to chance if something happens to my husband and me. I want all of our assets to go where they should go to take care of those I love the most.
3. I will appoint a guardian and have the paperwork notarized.
   Who will take care of my kids, and, long term, my son when my husband and I are gone? I’m locking it in now. I can always change it later.

4.  I will speak up when things don’t seem right at school.
I have already kickstarted this one but I am going to continue into the new year. I plan to be alert and proactive. If I don’t speak up for my son, no one else will.

5.  I will not underestimate my son.
Sometimes I predict how my son will react to a situation and I am utterly wrong. I think that maybe he won’t like something or a situation will cause a meltdown. This can make me restrict experiences for him unnecessarily. I am going to assume that HE CAN.

6.  I will remember to reintroduce experiences that were formerly rejected.
Just because my son has rejected pizza countless times doesn’t mean that next time he won’t try it. Persistence beats resistance, as my husband likes to say.

7.  I won’t be so hard on myself.
I am going to make mistakes. I am going to be tired sometimes. Such as life. I plan to acknowledge, forgive myself and move on in the coming year.

8.  I will think of and introduce new experiences on a regular basis.
I am going to dare. We are going to try new things. If I fail, I will have successfully figured out something that doesn’t work. And then, I’m moving on to the next new experience.

9.  When I realize that I have dropped the ball, I am just going to pick it back up again.
There have been and will be times where I am not giving special needs parenting my full attention. Times when I realize that am being less consistent than I wanted to be with oils and vitamins and home lessons and tablet time and everything else. Instead of beating myself up about it, when I notice that I have dropped the ball, I am just going to pick it back up again. I know that I can do anything in life but I can’t do everything, not all at the same time. Its OK.

10.  I am going to remember how blessed I am. That my life is full of abundance.
I remember when I dreamed of having what I have now. I didn’t envision it quite this way. In a lot of ways, what makes it different makes it better. I am so thankful.

What resolutions will you put into place for the coming year as a special needs caregiver? Please share in the comments below.

My son, Kai, is 6 years old and has special needs. He is developmentally about 2 years old. In addition to all of the challenges that he faces in all developmental areas, Kai has become uncooperative when work of almost any kind is presented. He fusses, squirms, cries, turns sideways in his seat. He just wants to be on his tablet, all the time. While he is learning, reviewing and enjoying when using the tablet, he also needs to be doing work with hands on, concrete manipulatives. For those confused, concrete means something that you can touch and manipulatives are simply things that you can move about and work with using your hands.

Last year, several things happened at once that threw me off course when I worked with Kai at home. My husband became very ill, we were spending lots of time in the hospital and we didn’t have anyone locally to help us. Essentially, everything that I was doing at home with Kai stopped. My husband was so sick that he couldn’t get up off of the couch for several months and trips to the bathroom were a challenge. Thankfully, he is on a slow road to recovery now but it was a very scary time. We also ended up moving to the country, where we were closer to family who could help more.

This past summer, I was in recovery mode. It had been a hard twelve months, we finally had gotten settled in our new house and I needed to relax. So, Kai’s home activities continued to be put aside. I feel guilty. I feel like it was a disservice to him. But I just… couldn’t.

Now that my husband is more or less functioning, we have started working with Kai at home again. We are having the same rebellion he is showing at school. We have met with the school and put several changes into place to help get him back to being able to focus on his work. My husband recalled that lessons always go better when we love on him and play with him first. So today, we sat Kai at the table and did just that. He started fussing immediately when we sat down, presumably to work, but when we just loved on him and sang to him and used the vibrating back massager on his head and arms, he relaxed and enjoyed it. We did not attempt work. We are first trying to build good associations with the work area before we reintroduce that.

One of the hardest things for Kai is writing. He is not interested in it at all and hates doing hand over hand (assisted) writing with any kind of tool you could possibly think of from crayons to pencils to markers – hates it. But there is one place where Kai WILL do writing, hand over hand, with joy and enthusiasm. No struggle at all. That place is the bathtub.

Kai LOVES to use bathtub crayons and write on the side of the tub. I usually hold out two colors and say, “What color do you want?” And he’ll reach for the one he wants. Sometimes, in the past, I have asked him what color he wants without showing him any choices. He has said red, blue and a mangled version of the word yellow. Not consistently. But when he does that it is really exciting.

After he chooses, I put my hand over his and put his fingers in a tripod grasp (this is the way they taught you to hold a pencil in school). The hardest part for Kai is connecting the tip of the crayon to the side of the tub, so my hand keeps it there for him. Then we write his name on the side of the tub as I say out loud, “K… a… i… Kai. That’s you! That’s your name!” He gets all excited and smiles and wiggles around. We do it five times. Then I offer two new colors, he chooses and we do more. Each new thing gets a new color. We draw circles, left to right lines, up and down lines and triangles. Sometimes the shapes vary. Then at the end I give him a huge round of applause. We get a washcloth, wet it and I sing the Barney clean up song (clean up, clean up, everybody everywhere, clean up, clean up, everybody do your share) while Kai wipes away everything he just did. Sometimes I hold my hand on top of his. Sometimes he can do it himself. And that is Kai’s writing lesson.

The only place Kai will do this is in the bathtub, during a real bath.

You may be wondering how I figured out that this would work. It was a huge, long process. I figured it out by learning what DIDN’T work. What didn’t work was crayons, markers, colored pencils, regular pencils, pens, paintbrushes, chalk, colored paper, lined paper, drawing in a salt tray with a chopstick, forming letters with playdough, stamping, tracing with writing utencils, tracing with fingers, and probably a dozen more things that I can no longer remember trying. There wasn’t a whole lot left to try when I stumbled across bathtub crayons. Go figure.

There is something about the water. If your child loves water, they like any activity you do in the water better. If they hate water, forget it. This one’s not for your kid.

For now and the foreseeable future, we are back to writing during the bath. We will attempt the other methods we tried again as Kai is able to regulate himself more and as we work through this period where he is work averse. Even though it feels like he may never do his work again, I know this is a phase that we will get through and push past.

When something doesn’t work, don’t be afraid to try something else. You may not get the result you want on the first try, or, like me, on the 20th try. But you WILL find something that works if you keep trying. Be creative. Think outside the box. (In fact, you can lose the box, this gig is all about losing the box). You can do this.

In what ways have you been creative to solve a problem with your special needs child? Please share in the comments below.

To say that Texas is like its own country is not an overstatement. One of the things I really had to adjust to as a new Texan, having been raised in New York and having lived in Los Angeles and Las Vegas, is that Texas moves along in time at its own pace. And, sometimes, depending on the topic or cultural perspective, they are about 20 or more years behind.

For example, when I first became a teacher in Texas, I noticed that yes, the staff was multicultural, but they seated themselves in a segregated manner at staff meetings. The black folk sat with the black folk. The hispanic folk formed their own group. The white folks tended to be in their own space as well. There were no Asian folk at all. Having grown up as a minority that passes for white in a black neighborhood, this was WAY outside my comfort zone.

In New York, just from a practical standpoint, there is not enough space to do this. In a city of more than 8 million people on an island that is 13 miles by 2 miles, people get used to mixing. That’s not to say that it is always peaceful, but, mostly, it is.

We moved last year from Fort Worth to a tiny town in East Texas. In some ways, it was like moving even further back in time. The town is quaint, the folks know each other. There is a Main Street of businesses. The other day I went to the Wal-Mart in town and saw a couple decked out from head to toe in camo, and it was not just a fashion statement. They were getting ready to go hunting. Behind them, about 20 feet back, I saw a guy in a huge cowboy hat, Wrangler jeans and boots. This is every day life here. It is wildly different from New York.

It took a long time to get used to Texas.

What stands out to me, incredibly, is that there is one area in which my tiny town in East Texas exceeds my experiences. This is in the area of special needs acceptance. They not only exceed any other place that I have lived, they blow those places out of the water.

My son, who is special needs, goes to a completely special needs dedicated campus. While many students need and have inclusion in the general education setting, my son is low functioning and this is not and never will be appropriate for him. The campus does a stellar job, loves all of their special needs students and they are team players. 

My neurotypical eight year-old daughter goes to regular public school. She is in her second year in a row sharing her class with an autistic kid. The school has created such an accepting and warm environment that it is a normal occurrence all day long to hear students from different grades greeting this child in the halls. His classmates accept him totally. Any behavior that might be deemed “strange,” is merely accepted as his normal. These children are 7-10 years old. And THIS IS THEIR NORMAL.

This same daughter is in a karate class in East Texas. This class accommodates students with a wide variety of special needs. My son does not attend because I don’t believe that he is developmentally ready but he could and might in the future. I recently participated in a Facebook discussion created by the sensei (teacher). He asked, “If you were to have a tournament and include a special needs division, what are some names that we could call that division?” No fewer than FIFTY people participated in the discussion! And, although there were some who obviously “didn’t get it,” when it came to being sensitive to what to call the division, everyone seemed to see the importance of having that division and honoring it.

Think back to the 1900’s (not so long ago). Special needs children were often institutionalized. They didn’t go to school. They were called names like “retard.” They were fringe people. They were picked on. And much, much worse. Take a look at this link for more information on the horrible treament that we have hopefully left behind for good:

You can say whatever you want about the current political climate. About the changes in our country in the last couple of years. But I will say this with absolute certainty. WHEN A KARATE DOJO IN RURAL AMERICA HAS A SPECIAL NEEDS DIVISION AND WANTS TO GIVE IT A SPECIAL NAME TO HONOR SPECIAL NEEDS FOLKS, OUR SOCIETY HAS ACHIEVED GREATNESS. At least, in this area.

I am comforted. For my son, and all our amazing special needs angels. This is the greatest time in history for them to be alive. 

What are you investing your energy into? As a caregiver, it becomes a never ending juggling task to make sure that everything is taken care of. This is especially true when your special needs child is low functioning or has many areas of delay. For example, my son is six years old and has multiple diagnoses. He is low functioning. He needs assistance with speech, fine motor skills, large motor skills, life skills, behavior, small and large tasks, dressing, bathing and more. It is easy, especially when first diagnosed, to get overwhelmed as a caregiver. You want your child to have every chance to be successful.

The fact is, you can’t do it all, all at the same time. I know this because I tried. I thought, if therapy helps, more is better. Four sessions a week on top of half day special needs pre-K, plus the school therapy seemed ideal. I signed us up and away we went.

It started out OK at first, because everything and everyone was new. Then, when the honeymoon period was over, my son started to rebel. He didn’t want to work in therapy. He stopped wanting to do activities at school. He just DIDN’T WANT TO DO IT. It was too much.

Sometimes, you just want to be left alone. I mean, don’t you?

In my quest for giving my child EVERY OPPORTUNITY, I was actually taking some of his opportunity away. I also learned that advances in different educational areas usually happen at different times. In other words, right now, my son is starting to talk. It is still very limited, but this is the area in which he is growing. When I see growth in speech, usually other areas, such as Occupational Therapy (working on fine motor skills) seem to stagnate. Then, speech will start to stagnate but he may do something new on the Physical Therapy end of things such as jumping with two feet off the ground or catching a ball with assistance for the first time.

I have learned blitzing might work in football but it rarely works with my son. So, what works? How can you support your special needs child in multiple growth areas without blitzing them?

1. Take a deep breath. It is a long road and like in a marathon, if you sprint you will run out of energy and we are just getting started.
2. Choose one or two areas where your child might be making advances. This does not mean that you are ignoring other things that need to be worked on, but your main focus at home or if you get therapy outside of school can be to have extra support where advances are being made.
3. Cycle in and out of therapy. By all means, keep going if it’s working!Not working? Scrap it for a while. Choose to take off a therapy cycle (the therapist may have 4 or 6 or 8 week cycles) and come back to it if your child stagnates for longer than a couple of weeks.
4. Use your child as a guide. If you see that they were talking more and you were supporting them with speech but suddenly they are stagnating in this area, where do they seem to be improving? Be flexible. Let your child’s changes guide you.
5. There is no one tried and true way to improvement in any area of deficit. What works for one child may not work for another. I know this because in the Physical Therapy room my child was melting down while other kids were happily working away with their therapists in the same room. Doing the same thing. However, my son would happily ride the therapy bike all around the halls and would often pass a child who was sitting on his bike, refusing to do anything. Don’t compare your child to anyone else’s child. Compare your child to where they were a day ago, a week ago, a year ago.
6. Ask for help. If your child is under age three, ask for help through Early Childhood Intervention. Older? PPCD. Older still? The diagnostician at the elementary school.  Or your case manager at therapy.  These people can help make a plan for improvement in all areas. Make sure you agree with their ideas. It is always OK to ask for alternatives when something doesn’t feel right.
7. Know that advancement is a pendulum process. Your child may take two steps forward and then one step back. This is actually the norm in typical kids as well.
8. You are OK. Your child is OK. Truly. Believe it. Try to settle down into the idea of you both being OK. Because you are. Things may not be what you envisioned and you may be overwhelmed and confused right now, but you are still OK. And it gets better. It does.

In what ways do you support your special needs child’s growth outside of school? How do you keep from overwhelming them? Please let us know in the comments below.

I recently posted about a significant milestone in my son, Kai’s life. While I was very proud of him for achieving it, it also drove home to me the point that the worksheets coming home from school with him were developmentally inappropriate. I had been feeling a growing sense of unease about several things happening at school and knew I had to speak up. If you missed the post, follow the link and you can get caught up.

Teaching the Special Needs Teacher to Adjust to Your Child’s Ability Level (because two year-olds shouldn’t be doing worksheets)

I called and scheduled an appointment at Kai’s school. The Instructional Specialist is also the principal of the building (we live in the country, this is unusual). I decided that we would meet with her and if we needed to schedule an IEP meeting after, we would. You don’t have to gather the whole group at first. In fact, sometimes it is faster and easier to get things changed if you don’t.

It is important, whenever you go into a meeting to talk about your child that you are prepared. You want the best outcome. It is not dissimilar to a meeting in the corporate world. If you are a young parent or someone just getting started in the workforce, it is likely that you are not familiar with what that preparation could entail. So, for the youngsters, newbies and anyone else who finds this useful, I have made you a preparation list. 

How to Prepare for a School Meeting for Your Special Needs Child When You Are the Initiator

• Know what issues you want to discuss. This may or may not be a short list. In this case, ours was long. We probably covered 15-20 different issues in our son’s meeting.

• Write it all down. Type it up if you prefer. This document is for you, not to be shared or “handed in.” It is so that you can refer to your notes and make sure that you have covered everything. You can also write all over it and cross things off as you go.

• Think of how you envision the issues could be solved. Have suggestions of what could be changed. My husband and I thought that the daily report that came home with our son was very uninformative. We knew what we wanted to hear about daily. So, instead of having them try to guess at what we wanted instead and having to come up with a new form, I designed my own form. It had all of the questions and prompts on it that I wanted the teaching team to fill in daily so that I could know what the heck was going on. If you missed the post where I showed the report I made, you can check it out here:

Don’t Like the Daily Report Being Sent Home? Make Your Own!

Not so great with computer design? Search for daily school report forms on Pinterest and Google. You don’t have to reinvent the wheel. Or, just give them a list of what you want to know and let them take care of it.

• Plan to be flexible. The people you meet with may have other, better ideas. They do, after all, do this for a living. Be open. Honestly, there are a million ways to do it right when it comes to education. Just listen to your gut. If you feel heard and understood, there’s no shame in trying it their way.

• Offer to help. The teacher stopped doing playdough with my son because he was eating it. I want him to do playdough. So I asked if it was OK to send in a batch of homemade play dough for the classroom. It is edible. They were thrilled. Problem solved. Yes, I could have just given them the recipe, but I know they have a lot on their plates. Also, remember, you will be known as the caring parent who sent in the play dough for the class and this goes a long way in the future when you want something. All that for about $2.50 and twenty minutes of effort. Play dough may have nothing to do with what you are doing, but if you want the recipe, check out my blog post about edible manipulatives and get it, here:

Teaching the Special Needs Teacher to Think Outside the Box – Edible Manipulatives

• When you open your meeting, open with something good. Say something like, “Before we start, we just want you to know how happy we are that (Insert your child’s name here) is here at this school. We feel that the staff is so loving toward him and we are just so grateful for that.” If this is not true for you DON’T SAY IT. Say something good and true. Nervous? Can’t remember stuff? Write it down at the top of your page of notes. This is not a stage performance, it doesn’t have to be memorized.

• Believe that everyone involved wants a good outcome. I taught for fifteen years in general education and, after, became certified in special education. I am the parent of five kids (stepkids and birthkids). I have sat through thousands of meetings in the school setting on both sides of the table. Never, ever, have I met a teaching professional that doesn’t want the best outcome for the child. You may not agree on what that is, but you all want a good outcome.

• Do not be afraid to show emotion. I have talked to so many people who have said that they are afraid that they will cry in a school meeting. Again, having sat countless times on the teacher side of the table, I can assure you that NO ONE will look down on you if you cry. They have plenty of tissues. And usually, chocolate. From the school side of the table, if you show emotion, it means you care. They love that you care. It’s ok.

• Close the meeting with something good as well. Compliment them on an achievement of your child’s that you know they had a hand in. Mine was, “I just want you to know that Kai has gotten to the point where he can brush his teeth while standing up at the sink. He still needs some help but he is calm and participates. We used to have to pin him on the bed and force tooth brushing and now the process is so much easier! It’s becasue of you guys. Thank you so much for all of that hard work.” Remember, only say it if it’s true! (By the way, opening and closing with something good and putting the parts that need work in the middle is a communication tool called the sandwich technique. The bread is the good, the meat is the not so good and the other bread is the good. When you open and close with good, that is what they remember. This works in a myriad of situations. Try it!)

• After the meeting, follow up. Send a note or a text or an email and tell them how glad you were that you all met. If you committed to sending something to school, let them know what action you have taken to make it happen. Keep the lines of communication open. Make them feel appreciated. That goes a long way.

As I mentioned above, the person we met with, D, was the Instructional Specialist but she is also the principal of Kai’s building. My husband and I met with her for a whole hour. When I told her the story of Kai meeting Piaget’s milestone of object permanence, she was grinning from ear to ear with pride for Kai. Then I asked her my big question. Why in the world should he be doing abstract concept work like a worksheet when he just achieved concrete object permanence? She looked me directly in the eye and said, “He shouldn’t.” Very calm. I wasn’t attacking, I was asking. She wasn’t offended, she was answering. I was upset prior to the meeting because I saw what should have been seen by the teacher and should never have been used as an educational tool for him at this stage. I calmly addressed it, with research to back myself up, and got what I needed. She and I discussed alternative options to teach Kai what he needs to learn and she wrote everything down. She started implementing the very same day.

I want you, as special needs parents and caregivers, to know that you can do this!

Know that you don’t always get the outcome that you want. If you are unable to resolve the situation to your satisfaction and get what you need, take the next step. Ask the person who you are meeting with what that step is. Say something like, “I am not feeling satisfied with the outcome of our meeting. I see that we don’t agree on the steps to take to resolve the issues that I have brought up. Since we don’t agree on how to proceed, what is the next step?” You ABSOLUTELY CAN say that. They should be able to tell you what that next step is. If they can’t or won’t give you this information, ask to speak with an administrator. Explain the situation to them. Ask them what the next step is. If they don’t know, they know how to find out.

Kai was using hands on manipulatives today. He was not doing worksheets. I know this because the new daily report I created told me so. It was in his folder when he came home.

This is science, but it’s not rocket science. You can do this. Advocate for your child at school.

You’ve got this.

What steps have you taken in the past to make changes to your child’s education or therapy process? Please share in the comments below.