Feeling lost

There are many times in a parent's career that they feel lost, unsure of what to do next. I am going through one of those times. T is struggling so much emotionally right now, and I have no idea what to do to help him. He is going from my sweet little boy, to an angry, mean kid in seconds. He goes from being my happy go lucky kid to a puddle of tears and shakes in the blink of an eye. It's like someone flips a switch on him, the change is that quick. There are a lot of transitions happening now, the end of preschool, saying goodbye to friends, preparing for summer, and then kindergarten. He's going through a growth spurt, so his emotions are trying to grow with him. He feels out of control of what is happening to his routine, to his body, and emotionally. You can see fear in his eyes when he's angry, as well as when he's sad. His anxiety is palpable at times, and it breaks my heart. Last week I spent an hour trying to comfort T as he sobbed in my arms. He was missing my grandmother who died 1.5 years ago. They weren't super close, but her death is the only experience he really has with losing someone. As he sobbed, and shook, I held him and tried to comfort him. I could feel his pulse racing, and hear the panic in his voice as he asked question after question about his GG and how he could ever talk to her again. His sadness and grief had turned into a panic attack. That was the night that I realized I was helpless, that I had no idea how to help him. Until this week he has been holding it together at school, and then coming home and losing all control. Today, however, was a different story. He went from smiling and laughing on the bus to crying and screaming, and back again with no known cause. He was super emotional during school, asking for me, for his "Geego" (security blankey)and his frustration level was super high. When he came home, he was sweet until I had to say "no" the first time, then there were tears, thrown toys and stomping feet. When he calmed down from that he cried and cried about how he wouldn't be able to take his bird with him when he was a grown up and moved out. Those are just a couple examples of what life for T has been like the last two weeks or so. Granted, he has been able to appropriately handle his emotions during school until today, but he is obviously miserable. And I, his mom, don't know how to help him. The fact that he is struggling so hard to hold it all together through school, and now having trouble with that, makes me very nervous for kindergarten next year. Will he be able to make friends even if his emotions get out of control? Will he be able to handle full day kindergarten? Will he be labeled "the bad kid," or the "baby." I am scared for my son and I have no idea where to turn, what to try, or what the answers are. Today I am lost.

The good times

Life with my 5 year old, SPD kiddo can be tough...

But then there are the good times. The past two weeks have been so smooth, that I imagine this is what it's like to have a neurotypical kid. T has been so great! His body is organized, his focus is sharp, he's flexible and generally happy.

It's times like this that remind me that all the hard work we put into his therapies is worth it. The exercises, the weighted vest, the making special meals, and the focus on games that improve his SPD symptoms are all working.

The last two weeks I have received nothing but good reports from T's teachers, his OT and his PT. At home he has worked so hard on being flexible when his schedule has to change, and very honest when he needs it to stay the same. T has been very vocal about what will help him keep "his engine in the green," and we have worked as a team to make those things happen. He has been patient and controlled when his needs had to wait for a few minutes, and I have been very careful to make sure that I take the time to help him. It's been a partnership made in heaven.

At school, T has been flexible with change. He has participated in activities that he usually tries to fight, like music class, and he has been kind to his friends. T has been following directions, and has volunteered to help around the classroom.

At OT/PT, my usually unfocused, sensory seeking boy has been calm, and focused on the activities. He's been respectful, and eager to work hard. There has been more improvement in both therapies in the last two weeks, than there was in the past two months. He has come out of the therapy office smiling, and feeling extremely proud of his work. It is an awesome change.

At home, T has been wonderful. He has been happy to play with toys by himself while I do work around the house. He has been a wonderful host to a few playdates, and even politely ended the playdate when he was too overwhelmed. He has taken quiet breaks when he needed them, and taken jumping or spinning breaks when those feel right. There have been fewer arguments, and he has even tried a few new foods.

Sometimes it feels like we take two steps forward and three back, and it's so easy to get stuck on the hard times. I am so thankful that, this time, I am able to step back, relax and enjoy this period of calm. I hope that this break will leave T and I more rested and prepared to deal with whatever challenge is next.

"I Hate Myself!"

There is little harder to hear than the person you love most saying that they hate themselves. It breaks my heart to even think that my beautiful, smart, and sensitive son feels this way sometimes. I know we all have our down days, but a 5 year old should never feel that way.

This is our new struggle.

T has been saying this the past couple of weeks, mainly at school. When I ask him about it, he says that it's true. He "hates" himself, and that he's not as good as the other kids in his class. He is really struggling with writing, and he sees his friends (both in school and out) able to write better than he can. 

The thing is, it's not true. T goes to a developmental preschool where the other kids are of varying abilities. He is by far not the worst writer in his class. heck, there are children in there that can't hold a pencil. But he doesn't see this. He only sees the other students who can write their names on just one line, that they can form numbers on their paper, that they can draw the shapes they are asked to draw. 

He is very discouraged, and doesn't want to practice at home. He says that he's shy, and that I'll be upset that he can't write well. 

I've talked to his OT and she will start working more closely on his writing skills. And I know his teacher has been working closely with him.  

His teacher is also in very close contact with me, she emails me every afternoon to let me know how T was at school. He has been unusually emotional lately, but I chalked that up to his recent growth spurt and the return to routine after the holidays. I'm starting to worry that there is more there, I'm starting to worry about his self esteem.

I am realistic that this is just the beginning of the struggles he will face in school. That there will be many more things that will make him feel like he is not "as good" as his peers. What I'm trying to figure out now is how to build the self esteem he needs to know that he is just as good as his friends, no matter his abilities. I try to remind him of the things that he does really well. For instance, he is extremely athletic, he has an amazing grasp on the English language and communicates at the level of a 7-8 year old (if not higher now) and he is so compassionate.  

My son is developing the self awareness to know that he is different from many of his peers. He has told me about how some kids are afraid of him, that he doesn't understand the rules to the games kids his age want to play, and that he feels different. I think my challenge as his mother is how to build on the things he does well, and to support him when he needs to work harder on the things that he falls behind in. Creating a balance for him, so that he can build a healthy self image. 

How do help your child when they realize they are different? 

Trying Out Best Through the Holidays

Holidays are hard. I think they can be hard for adults and children, both typical and special needs. With the excitement, the magic and the wonder, comes the frustration, the over stimulation, and the lack of routine.

We live 3 hours away from where we grew up, and where our families still live. The good news about that is we get to see both sides of the family during holidays. The bad part is that we're away from home, and routine often for 4-5 days. We're also away from many of the sensory diet tools that we use. The trampoline is just too big to bring, for example. Both grand parents houses are not exactly 5 year old friendly, but especially when that 5 year old has little to no impulse control.  There are breakables, decorations, dogs (that are shy of kids, especially boisterous ones) and not a lot of space for unwinding time.
This year we have decided to stay at a hotel. I think it is going to be great to have a home base where we can rest and try to meet some of T's needs. Though we won't have some of the bigger sensory tools we have at home, we will be able to bring some of the smaller tools and have a nice quiet place to use them. I'm also looking forward to better sleep for all around, black out curtains are a must for T! I plan on bringing either his play dough or his bean box for some tactile stimulations so that his urge to touch everything in sight is numbed a bit.
Some other tools that I am glad we have this year are T's headphones, and chewies. They will be huge help, especially when we're in the loud and crowded environments that the holidays seem to mean for us. T gets very overstimulated when subjected to loud/busy places and being from very large families, that's basically what we have for him... From family get togethers in small houses to Christmas Eve breakfast at a wonderful, though crowded, restaurant. This year I'm hoping these tools set T up for success rather than several days of sensory overload that borders on panic.
In the past, the easiest part of holidays with family has been the several hour car ride to and from our hometown. I'm hoping that this year is the start to some new traditions, and less tension.

A visit to the ER

Taking any kid to the ER to get a cut mended is stressful, taking an SPD kid to the ER is REALLY stressful. 

Today T was invited to a play-date at Chuck E Cheese, one of his favorite places in the world. It is his own personal heaven, he loves the games, the playground, and the food. He never seems to feel out of place in his SPD "gear" and he plays so well with others there. Anyway, today we had been there for a grand total of 10 minutes when he ran head first into the "Deal or No Deal" game machine. He hit it so hard that he was knocked down to the ground. At first I though he just had a bump, but my friend asked me if he was bleeding. Sure enough there was blood coming from a cut, about an inch long, right above his right eyebrow. 

When he saw the blood he freaked out! Screaming for his blanket, which of course I forgot (way to go mom,) and that he didn't want blood, an ice pack or stitches!! You see, he got stitches 2 years ago when he bit through his lip in a fall, and he's never forgotten it. Every time there is blood he is convinced that there will be stitches. 

I took my screaming, bleeding ball of 50 pound kiddo into the bathroom to see if I could clean him up. Sure enough, when I got some of the blood cleaned up, I saw that the cut looked deep and the edges weren't coming together. He probably needed stitches, or at the very least butterfly bandages. 

When I told him that we needed to go to the hospital he lost his mind. Screaming, and clinging to me, T begged me not to take him to the hospital. He promised that he felt better, and that he was ready to play. Never mind the blood trickling down his face. So off we went.

In the car T refused to use the ice pack, no surprise there. Cold is painful to him, like burning, and sharp pain at once. This was to be a theme for the afternoon.

By the time we got to the ER (about 10 minutes) T was completely calm and was almost excited to get his cut fixed. Though he asked everyone he saw if he needed "a stitch." They took him back and started cleaning him up. When the nurse asked about his pain he told her, "what pain? There's no pain, just blood and a cut." They told him how brave he is, but I don't think they realized that kind of pain doesn't really register for him.

They decided to numb the cut with lidocaine gel, which T was fine with until he found out that they kept it in the refrigerator. Apparently for most people the cold gel doesn't hurt as much as room temp gel, or something like that. Ms. Nurse put the gel on T's cut and he screamed, "Ouch! The cold! It hurts, too cold!!" She patiently explained to him that it was "just cold" and that he was okay. I informed her that he has SPD and that, to him, cold is incredibly painful. That's when I was reminded again how few medical professionals have ever heard of SPD. To her credit, she listened and made a comment about how she would have to look "that" up. 

After two more cold gel treatments (and screaming jags) it was time to clean the cut and see what the treatment would be. T did really well until he was told that all he needed was to have the cut super glued. He did NOT like the prospect of anyone gluing him. He cried and screamed and struggled to get away. Afterward he told me that he was scared of the glue because he thought that it was going to be in him forever, and that they were going to use Elmer's glue. Then the smell of the super glue made his skin hurt. 

Minutes later we were given our discharge papers and T was so anxious to leave that he walked out of the room with only his Crocs and underwear on. (he had been in a hospital down to keep his clothes from getting bloodier.)

Right now he is proudly showing off his hospital bracelets and his cut with the "magic, invisible bandaid" on it. 

Not only did my kiddo get fixed up, but he left happy and we may have spread some SPD awareness. Not bad. Not bad at all.

Where is the Balance?

How does a parent know when it’s time to back off from a certain therapy? That is the question I find myself asking right now. T is doing weekly private OT, weekly OT at school, ILS therapy at home and at his private OT, he will be starting PT in the coming weeks and tomorrow he is having a functional vision test to see if he would benefit from vision therapy. How much is too much?

T is in his second year of a developmental preschool, and he is also in a kindergarten prep class on Wednesdays, so he is in school from 8:15-11:45 five days a week. He comes home from school so tired that he has been refusing (to the point of complete meltdowns) his ILS therapy. We have tried letting him have a quiet time break after school, we have tried doing ILS in the mornings before school, we’ve even tried weekend only sessions. Now I’m trying to figure out if the benefits are actually worth the fight. It was certainly beneficial over the summer, but with school and other therapies, I’m not so sure.

T will be starting PT soon, so that is another thing added to his schedule. I am really thinking that taking a break from the ILS until summer might be a good idea. That way he is getting all of his structured therapies outside of the home, and the therapy he gets at home is on an “as needed” basis. I want home to be a relaxing place for him, where he can feel free to rest when tired, jump when he wants to jump and do therapy activities when his body needs them.

My sweet little boy has asked me on several occasions, “why do I need so much therapy, what is wrong with me? Why am I broken?” It breaks my heart to know that he thinks of himself as broken, and the fact that he has several different therapies makes him feel that way. I try to explain SPD to him, and explain that he’s not broken, his brain just works differently. This sometimes helps and sometimes he looks at me like I’m full of it. He just knows that most of his friends, well the ones outside of school anyway, don’t have to go to OT, or have to wear headphones and do “exercises” at home. He feels different from his friends, and that bothers him.

My struggle is giving up something that might be helping him. How do I make the decision to end a therapy? Does it mean that I’m not doing everything I can to help him, or is it exactly the opposite? I need to figure out what is best for my son, not what is best for me. I need to find out what the right balance between therapy and just letting him be is, and I need to try to do this without causing a backslide in his progress.  I need to let myself do what is right for him without feeling guilty for not doing enough.

Evaluation Time

Last week we received T’s evaluation after 18 months of OT and it showed some significant improvements. It also showed several areas that hadn’t improved at all, and some that had even gotten worse. His OT suggested a few things to try, a PT evaluation, a full function vision evaluation and starting a cognitive program called, “How Does Your Engine Run?”

His biggest improvements were in his fine motor skills. This makes sense because he gets two OT sessions a week dealing with fine motor skills. Once in school and part of his private weekly OT appointment covers the fine motor stuff.  He also improved slightly in the length of time he was able to focus.

Pretty much all of the other issues he has have either stayed the same, or in some cases gotten worse. Now, to be fair, I don’t actually think he’s really gotten worse. Here’s my hypothesis on why he’s showing some sliding in certain areas: now that we’ve had the label of SPD, I’m more educated on what is SPD related, and what is normal kid stuff. So when I filled out the parent questionnaire this time, I was able to provide more complete answers, so in reality, I’ve gotten better at recognizing SPD symptoms. Ones that he has had all this time, but I never included them on the parent evaluation form before.

T’s occupational therapist agrees that this is likely true. She also points out that he is coming up on his 5^th birthday, and is going through some significant changes physically and developmentally. These are often times of regression at worst, and stagnancy at best. We have a bit of both.

I took T for his evaluation to see if he would benefit from physical therapy, and in the 2 weeks since the OT evaluation was done, some of the concerns have righted themselves. Still, he will probably need some form of physical therapy for his core strength and balance issues. He is also slightly behind in his cross body coordination. However, the Physical Therapist only believes that he will need PT on a short term basis of 3-6 months. They believe that with the OT we will see a marked improvement in his gross motor skills.

As for the other sensory stuff, the stuff that has shown the biggest lag in improvement, we will be looking into starting the “How Does Your Engine Run” program in the next few weeks. I still have some research to do on the program, so I will be ordering the book soon. We also have the functional vision evaluation scheduled for next week.

All in all, I am very excited to see what progress T will make in the next 6-12 months with his new tools. I am forever thankful that these tools are available to him, and that he is such a great sport when it comes to participating in all of the evaluations and therapies we involve him in.

Does anyone else use the “How Does Your Engine Run?” program? I would love to hear about your experience!