Getting Assistance for Your Child: Essential Questions to Ask

It’s Not a Parenting Failure to Get Help

I once told my mother that there is a reason that people spend a long time in school, take really hard tests (in some cases, more than once. I’ve been told the BCBA exam is horribly difficult) and get observed for a lot of hours to become mental health professionals. They are dedicated to what they want to do. They have to continue that education by taking classes and renewing their licenses every so often. States want to make sure these professionals know what they are doing and do so ethically. I also told her that there is only so much that I can do as a parent, even knowing what I do. There are a lot of things that I don’t know, and that’s why I felt that at one point, it was time to get outside help for my kids.

In Lily’s case, there wasn’t much of an option. Her delays were severe and required outside help. She needed help learning how to walk, talk and do other tasks that I couldn’t have taught her on my own. In the beginning, I really did blame myself, but after hearing that there was no way I caused her delays, I felt a lot better.

Julian definitely caused some debate. I knew what I was working with after he was diagnosed, and yes, I could have worked with him on my own. With two other kids and a full-time job, plus not really knowing what to do or how to do it, it really was time for the pros. He’s been to group therapy for social skills, which helped a lot. Every Tuesday for almost his entire third-grade year, he got out of school early to go to group. He learned how to interact with others appropriately, to speak up, along with other things. Julian is a quiet kid by nature, and we’re okay with this.

I just don’t want him to be so quiet that he is ignored or entirely left out. He has also seen a psychiatrist, and we loved her. Unfortunately, she had to stop seeing patients after some post-birth complications, so now he sees a psychiatric nurse practitioner.

It is okay to get outside help. We’re not just parents- we are also humans. We don’t know everything, and that’s okay. Your child will benefit greatly from outside services.

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Finding Assistance

There are many ways to find providers, it mainly depends on what you need and if you already have someone helping you, like a social worker or someone similar. If you’re looking on your own, it always helps to start by asking other parents you know that are in a similar situation. You can also ask your child’s pediatrician.

That’s where we started with both Lily and Julian. We moved around a bit by referral. It just so happens I used to work with the psychiatrist that started the practice that Julian is at now. (He’s absolutely great, but for obvious reasons, he can’t see Julian.) If nothing else, there is always Google. Google is everyone’s friend.

A Few Definitions:

Provider- a professional that provides some sort of service for your child

BCBA- Board Certified Behavior Analyst (these people do great things, lots of behavior modification, addressing challenging behavior, among other things)

DSP- Direct Support Provider (people who come into your home and work with your child on life skills, social skills and other things they may need. I worked as one for about a year and it was a lot of fun.)

Respite Care- to give parents or other caregivers time to care for themselves, run errands, etc while their child is being cared for.

I highly recommend checking with your health insurance carrier/Medicaid to see what is covered. These services can get very expensive, and insurance paperwork can be a huge challenge. Waiting lists are a thing and can be very long. It can be a bit weird seeing people you don’t know in your home and working with your child. This may take a while to adjust, especially if there are multiple people. Lily had three therapists a week at one point and it was a very weird thing. If you need to set limits, set them and be as firm as you need to be.

What You Should Ask

There are some questions that can’t be missed like:

  • What is your availability?
  • What experience do you have with this population?
  • Are there behaviors that you feel are too challenging for you? Everyone has their limits, and this is okay. My personal limit is spitting. Can’t do it.
  • How do you view your relationship with the rest of the family- siblings, parents, etc?
  • Best way to reach you? Phone, email, text?
  • How will you update me on my child’s progress/needs?
  • Emergency preparedness? Most agencies have trained their workers on a plan for this, so make sure to ask. The practice I worked for had a very detailed plan for injuries, weather and other emergencies.
  • References.

Of course, follow your intuition on the people/places you look at. If it doesn’t look right for you, most likely it isn’t. You will know when you find the right place or person for your child. Call those references. Read through the notes you made during the interviews. Do your research. You’ll thank yourself later. If you are looking for your child to be part of a practice, the questions above will be slightly different. Most places will allow a walk-through and give you someone to talk to. They’ll be able to answer questions, give you information to take home, and follow up.

The road of parenting is sometimes a rough and bumpy one. Looking for outside help is just a small speed bump.

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Information courtesy of Seattle Children’s Blog

Pics courtesy of Unsplash

Easy Peasy Pleasy

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A Beginner’s Guide to ADHD

Most kids are not quiet. They tend to be loud, run around and get into things. Some kids are a bit more adventurous than others. They are easier to anger, yell or interrupt us. Maybe all of the above and more. This can go on for years past the “terrible twos”, which is supposed to end by age four at the latest.

The Trip Into the Unknown

There is not a certain day that I knew that something was a bit different with Julian. I just knew. That story can be read in Looking At The Bright Side

It’s incredibly difficult to realize that your child may need to be evaluated for any reason. You may question yourself as a person, as a parent. I did this daily. Matthew did this towards me and things went badly between us after that.

There are many books to help get you through the diagnosis and afterward, but what about the unknown? There are support groups for this. I’m in a couple on Facebook, both local and non-local. They’re helpful for almost any question I’ve had in 6 years.

The unknown is scary. Why didn’t I see this earlier? What’s next? What about when my child is an adult? What about medication? These are just a few questions.

Just about every parent has a moment that snaps them into action- a play date gone bad, daycare/school issues or other similar reasons. I realized things were adding up to not being the way they should be. Julian was still having loud and destructive tantrums, very aggressive and his siblings were scared of him. Plus he had problems sleeping and was very hyper.

Julian and a worm

Julian has always loved bugs..one of many

Looking For The Signs

The signs of ADHD are usually hit-you-in-the-face obvious, at least with boys. With girls, it may be less obvious and diagnosed later. Many boys are diagnosed as early as four or five (Julian was five) but because of personality differences, most girls are diagnosed as late as 10 or 11, if not older.

This information can be found on Additude Magazine

Main Signs of ADHD:

  1. Problems with concentration and/or retaining focus on school work, household chores, etc. This can mean incomplete work, half done chores, missing homework, etc.
  2. Easily sidetracked or loses focus.
  3. Doesn’t seem to listen when being spoken to, like their mind is off somewhere else.
  4. Difficulty keeping belongings organized- school supplies, sports equipment, or even losing clothes, glasses or toys.
  5. Forgetful in daily activities. This can include chores, homework or other things asked of the child.
  6. Often has problems sitting still, staying in one place, seems driven by a motor or “fidgety”.
  7. Talks excessively and/or constantly interrupting others’ conversations.
  8. Difficulty waiting their turn.
  9. Runs and/or climbs in inappropriate situations.
  10. Intrudes on others repeatedly.

There is a timeline that these behaviors have to be observed for, and this leads me to the next step.

What’s Next?

I highly recommend speaking to your child’s pediatrician. They will know how to screen him/her for ADHD and if needed, refer them for testing. Julian was first seen by his pediatrician and then evaluated by a neuropsychologist.

If your pediatrician screens your child for ADHD, they will have you fill out a questionnaire and have your child’s teacher fill one out if that applies. It’s a pretty simple questionnaire. It helps them see what is going on from your perspective and an educational one.

The same will occur if you are sent for an evaluation. The evaluation may be one day or spread out over two. This depends on the testing itself and your child.

Each practice differs on results, so please ask about how long those take when you are setting things up. The wait can be excruciating. Our wait was two weeks but it crept by.

A painting at school

Mother’s Day 2012 at school

Moving Into The Future

Once you have a diagnosis, you will have a better idea of what to do. There are options, depending on what you feel works for your child and family. Medications aren’t for everyone but they definitely help. Julian has been medicated since not long after his diagnosis. It was a difficult decision to medicate a 5-year old that was already small for his age, but I am very glad that I chose that route.

Most kids with ADHD struggle in some way socially, and Julian is one of them. This didn’t surprise me since he also has autism, but it also broke my heart numerous times. He was placed in social skills therapy, as recommended by his former psychiatrist.

This social skills group was great and he went for almost a year. He learned a lot and has made a lot of progress in this area. I will discuss getting outside help for kids with autism and other disabilities in an upcoming post.

The main options include:

  1. Medication
  2. Therapy- occupational, social, physical, and/or for emotional issues
  3. A combination
  4. As recommended by your child’s pediatrician.
All done with group therapy

Finishing group therapy!

ADHD can be a hard diagnosis to figure out, especially in the beginning. There’s still a lot of stigma behind it- if others around understand more, we can help our kids be understood a lot better.

Have you had issues with getting your child screened for ADHD? Are you worried about a child that is showing symptoms? Leave your thoughts in the comments.

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Run Jump Scrap

Broken Wings Part 5: What I Wish My Spouse Knew

What I Wish My Spouse Knew About Our Child With Special Needs

This series was inspired by a Facebook post I read six weeks ago. A member posted this question “Does having a special needs child affect your marriage?” Post after post, people shared examples of how their marriage was tested. Some made it, others did not. I always wanted to create a platform where people could talk and share their experiences, the good and the bad. I cannot thank my collaborator Wrae Meredith Sanders enough for her open and honest contributions. Whatever your decision is, I hope you know you’re not alone and you will make it.

This is the last part of this series. Please feel free to like, comment, and share.

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There are many things that I can look back on now and wish that I could change. I’m unable to change the damage that was done to our marriage- both of us did things that we regret but we have been able to move forward together.

If I’d known that we would disagree so much and loudly, I would have shut the door a little more. I would have stopped and asked for a break–this would have helped more than we realized at the time. I would have asked why we had to be right all the time instead of coming up with a compromise.

Julian Needed Us to Come Together, Not Fall Apart

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If I’d known then that I’d spend many nights crying myself to sleep for so many reasons, I would hit the rewind button. I would figure out each separate reason instead of letting it all become a big ball of depression.

I thought I was doing the right thing–fighting you for Julian’s needs. This turned out to be two evaluations, a diagnosis of ADHD (combined), traits of Asperger’s (later amended to High Functioning Autism) and medications. He also needed group therapy.

Moms are supposed to do what it takes for their kids, right? The only thing is, I did it alone. I didn’t listen to you. You didn’t want any of these things to happen because you were in denial. If I had known what to say and not be confrontational, I would have done it. But I didn’t. That’s where I went wrong.

I tried explaining, even in a way you could understand but that didn’t do it. In your family, disabilities aren’t real unless you see it. Julian has the kind you can’t see. You couldn’t see it, so it didn’t exist. This even applied when Julian almost broke my nose and I had to get X-Rays.

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I sought out ways to deal with the loneliness. When your husband is in denial and emotionally bashes you daily, you have to find a way to cope. I drank. That was not productive at all.

I went out a lot with people who turned out to not be good for me, you even tried to tell me, but I didn’t trust you enough to care. I worked out in the gym obsessively and lost 60 lbs. Even my doctor was concerned. I barely ate for days on end. This didn’t help my decision making.

What I Know Now

We worked hard to put this family back together. I still have problems opening up to you this day. I finished therapy two months ago. You were there from day one to the last and cheered me on the whole time.

During that time, Julian has grown, and he has done well. He finished group therapy and dealt well with a change in providers. He is going into the seventh grade after a few bumps adjusting to middle school.

You’ve become so supportive of Julian and I. When he has a bad day, I know I can tell you about it. You’re happy when he does well. Raising kids isn’t easy and we have three. Having a kid with special needs makes things a bit more interesting and sometimes difficult. I’m glad that both of us decided to make this work.

Thanks. I know Julian wouldn’t say it but I’m sure he likes his mom and dad being together.

Love always…

Wrae

What I Wish My Husband Knew About Being A Special Needs Mom

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Dear Husband,

Never at the age of forty did I dream I would marry, then become pregnant a few months later. It took us both by surprise yet we agreed to go on this wild journey called parenting. I had a little more experience with raising a child as my daughter was fourteen when we tied the knot.

I was fat, tired, and cranky–everything a pregnant woman is and probably will be as long as little humans continue to beautifully invade our personal space. There were precautions because of my age and health, but I was sure I would go full term.

But I didn’t. He came nearly three months early. After a long stay at the hospitals, oxygen tanks, and therapy, our baby boy could live a normal life.

There’s Something About Keith

We both noticed how energetic he was, how once he started talking he couldn’t stop, and how sleep evaded him. No worries though, I sleep trained him. Plus, kids are naturally talkative and hyper, right?

But he never slowed down. After being kicked out of two daycares, we had him evaluated. I already knew, but I wanted to hear the doctor say it. He had ADHD.

Now here’s where the story starts to fall apart

I ran straight towards the ADHD armed with books, natural medicine because our pediatrician refused to help him, and age-appropriate behavioral techniques. You ran in the other direction, straight to the door of denial.

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Days grew into weeks, months, and even years. Six years isn’t much time to some, but when a person feels like they’re carrying the load alone, it can seem like a millennium.

The feeling is familiar because I went through the same thing raising my daughter alone. I felt overwhelmed all the time. I feel that way now.

As the primary caregiver, I stay on top of his meds, homeschool him, and take him to the doctor’s appointments.

I know you can argue that since I don’t have a nine to five, I should be doing this anyway. I remember carrying the same load as a full-time working mom too.

And when you did participate…

Yes, you went to the doctor with us sometimes. You ‘yessed’ your way through the appointments, but the heavy part of the load rests on my shoulders.

When he’s having a bad day, I try to redirect. You punish him by sending him to bed.

If he talks back, I remind him that his behavior is inappropriate, you yell at him and say things he will repeat later when he’s frustrated.

Even when you excuse yourself from spending time with him, he loves you anyway.

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If I thought you would really listen to what I have to say, I’d tell you that you are creating an insecure man who will be afraid to share his feelings, think he isn’t good enough and may do inappropriate things to get attention.

But I’m not brave enough. What I am is strong. I’m strong enough to walk away and do it on my own.

I don’t want to, but his well being comes first. The only reason I haven’t walked away now is that much like a little girl, I have hope.

You’re not a bad person. That’s why I haven’t left yet.

Until then, I pray we can fix these broken wings.

Love,

Bonnie

Comments? Leave them below.

Thank you so much for reading this series! We appreciate your support during this month. If you missed any of the previous parts, you can catch up here:

Part 1 Part 2 Part 3 Part 4

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A Parent’s Guide for Wandering and Missing Children

One of Many Nightmares

Wandering is a huge worry for many parents, especially for those of us that have autistic kids. I used to work with kids that wandered or, as it was known at the facility, “eloped”. It was scary to chase a kid down the halls or even outside, because you never know what they might be going after or why they’re running. Great exercise, though. It is also on my list of worries about Julian. He used to run off in parking lots among other places, and was extremely fast. He is still fast but no longer runs off. At almost 12, this is a good thing. I’m not as fast as I was when he was 5, and I’m not sure I can chase him anymore. The peak age is 5 and mainly depends on the severity of autism.

According to the National Autism Association, almost half of autistic kids have engaged in wandering behavior. You can find their website here. That can be a scary number, because most know the 1 in 68 kids statistic. The dangers in this are: encounters with strangers, physical injuries, hypothermia, heat stroke, drowning, etc. This website has a free booklet that can be downloaded that contain tips for safety. (I got it, and it has a lot of helpful information.)

Why Do They Wander?

Kids wander for a variety of reasons. When autism is involved, it’s a bit different.

  1. An undeveloped sense of danger. At my house, this is a top reason for a lot of things, and the main reason why Julian darted through parking lots. I cannot count the times I grabbed his small hands so hard I left marks. It’s harder than most people think to contain a small kid. He still lives what he calls “the dangerous life”. When your kid has autism and ADHD, you pretty much pray for the best.
  2. Boundary confusion. Literal minds don’t always understand instructions, and boundaries aren’t always visually clear. Autistic kids can’t always see the boundaries that they are told to keep. The park can be seen as a big patch of grass, and the beach can be a huge puddle.
  3. Communication issues. Non-verbal or limited verbal kids can’t tell you that the lights are too bright, the room is too noisy or if something else is wrong. They can, however, walk out of the room. They just want to get away.
  4. Special interests. If a kid sees a train, they might want to see it up close. They might even walk out of the house to see it without letting anyone know.

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Tips for Wandering

There are ways to help prevent wandering, but most of all: KNOW YOUR KID. If you know your kid and their triggers, this can help you follow the other tips. These tips, in part are from StagesLearning.com

  1. Understand the goal. What is your child’s goal in wandering? Maybe they just like to explore. This is great, but can be done in a safer way. Maybe they want to go to a certain place? This may take time, but can be very important.
  2. Figure out the triggers. Is your child trying to escape a situation? Is the area they are in too loud, too demanding (as in school)? Coping strategies can help.
  3. Tracking and security apps may help.
  4. Teaching safety- pictures, social stories, etc, may be very helpful. Some kids may wander may not be able to communicate in order to get back home. This is a fear with Julian. He is fully verbal but yet will not speak in some situations if he doesn’t know someone. He surprised me one day during a track meet when he got lost. A teacher from another school found him and he gave her my phone number so she could call me, and we were reunited. I was very proud of him.
  5. If wandering at school is an issue, speak to teachers, administrators and anyone else needed about school security to ensure your child’s safety.
  6. Swimming classes may be necessary if you are concerned about your child’s proximity to a pool, creek, pond, river, etc. This can be a life or death situation.

This site Snagglebox has some great tips on preventing wandering. Please look if you need tips or if you know someone that does.

If Your Child Goes Missing

I hope nobody ever has to use these tips. I hope I never do. It is one of my biggest nightmares.

The first step, of course, is to look all over your home. Ask neighbors, nearby family members, etc., if they have seen your child. If not, look around your neighborhood. Have others help if possible.

  1. Call the police. They are required to enter your child into the FBI’s national database right away and send a BOLO (Be On the Look Out) to surrounding areas.
  2. Be ready to give law enforcement your child’s description and picture. – height, weight, hair and eye color. Do they have glasses, other identifying information? Medications? Medical conditions? Date of birth? Other information will be asked for.
  3. Make yourself available, including your phone.
  4. Inform the National Center for Missing and Exploited Children (NCMEC) by calling their toll free number 1-800-THE-LOST

Most missing child cases are resolved within hours, according to Safewise

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I listen to a lot of true crime podcasts, and according to my kids, it makes me worry too much about them being kidnapped. They have NO idea. Most of the episodes I hear are about missing kids. Stay safe!

Resources:

Safewise

Missing Kids – includes downloadables for safety info

National Autism Association

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My series with Bonnie is in week three! Broken Wings Part 3: What Your Child Thinks About Your Divorce

If you have missed the first two parts you can catch up: Part 1 Part 2

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Broken Wings Part 3: What Your Child Thinks About Your Divorce

by Wrae Meredith Sanders and Bonnie Harris Price

We all know the hard truth; divorces affect kids. Even when they say they’re okay, you must know something in them breaks when a couple decides to call it quits. Kids may withdraw, eat or sleep too much.

They may even get fed up and tell you how much they hate you.

However, your special needs children may be unable to put it into words, but they know their lives have changed. Children with special needs feel loss, sadness, and pain just like the rest of us.

Most parents don’t split into friendly terms. Even when you try your best to keep it civil, kids feel the tension between you. Sooner or later, the signs of their stress begin to show.

Verbal and non-verbal cues

Anxiety and Fear

Kids can become very anxious about not knowing what is coming next, where they will be living, going to school, etc. They may fear to lose the other parent, friends, and the home if they have to move, and more. This may lead to problems sleeping, eating and withdrawing from friends. This can also cause issues with concentrating in school, which may be picked up on by teachers.

Sadness and Depression

Kids can feel as if they are losing their family. This can leave kids very sad, which is normal. They may feel sad at having to move, missing the other parent not being in the home daily, the changes in daily life, seeing their parent sad, etc. If the sadness is not addressed, or if it is under an extreme situation, this can become depression and the child may need to see a professional.

Anger and Aggression

Some kids are angry about their parents splitting up and may become aggressive towards them, siblings or other family members. They may become aggressive towards others. This may be a big change in a usually non-aggressive child or may not be in a child that has had issues with aggression in the past. Some kids have issues with saying what they feel and this is their way of saying that they are angry with their lives. Either way, this should be addressed immediately to prevent further issues.

In non-verbal children, aggressive behavior can become a big issue. They can also regress any recently learned behaviors and need extra help and reinforcements to get back on track with positive behaviors. They may also need help with expressing their feelings in positive ways- art and music therapies can be helpful.

How to Help When Divorces Affect Kids

Help your child through this trying time

Just as your divorce wasn’t easy, the road to building emotionally healthy children isn’t either. If all it took was love, you’d already be there. However, to make sure that your children adjust, take a look at some of these suggestions.

Acknowledge your child’s feelings

This is important for all children. Let them express themselves, and for non-verbal kids, this can be difficult. They can draw, write or try other ways to express their feelings. Some kids cry, yell or scream. Some kids withdraw and become quiet, and that may become a cause for concern. Let them ask questions– it’s normal and they do need to know what will be happening. It’s also okay for them to be angry. It’s a big change, and many children are not happy that their parents are divorcing.

Give age-appropriate responses to conflict

Younger kids need fewer details because they may not be able to grasp as much about the situation, but older kids may want to know more.

Parental conflict can damage kids, so try not to fight in front of the kids if possible. Also, try not to make them feel like they have to choose between their parents or criticize the other parent in front of them.

Provide as much structure as possible throughout the separation and divorce. This gives kids a sense of stability. One day, they may seem to “get it” and one day, be a bit unsure. Remain patient– it’s a big change.

Be consistent with the other parent

Try your best to work out a way to “co-parent” with your ex. Parenting peacefully is easier for everyone involved.

Take care of yourself. This means physically and emotionally. If you need therapy to deal with the split, see someone. Furthermore, keep yourself physically healthy so that you are able to deal with the strain of a divorce.

Incidentally, allow the kids to give input on visitation, but remind them you and your ex-partner remain responsible for the final decision.

Conclusion

Going through a divorce is like going through the grieving process. After everyone deals with the shock and denial, then here come the emotions. Anger, sadness, and depression will be a part of your special needs child processing.

In an ideal situation, both parents should work together to help kids through the transition. On the contrary, if you find yourself dealing with it on your own, by all means, please seek help. There are free and paid resources to help you make it through.

Comments?

What about you? Are you or did you go through a tough divorce? How did your child seem during the transition? Please share your stories with us below.

This five-part series will continue for the month of June if you haven’t already we invite you to read parts one and two. Please share with friends or family that may be going through this difficult time. We want them to know they’re not alone.

Broken Wings Part

Broken Wings Part 2