I'm new, and I (we) need help.

[masonsmama]

I am not sure where to start. I guess the beginning.

My son, Mason, is 3 years old. From the beginning, we have had a rough ride. As a baby, he did not speak or babble. His first word came at 21 months old. Since around 9 months old we have had issues with tantrums, biting especially. Between 18 and 24 months I just held on to hope that he was a rambunctious boy and it would pass. He is now almost 3 1/2 and things have not improved. We saw a speech therapist for several months but due to budget cuts, we were only seen 1 hour per month.

He has come far with his speech but my husband and I are the only ones who understand his language. I do not feel like he is behind developmentally. But I feel like something in his emotional mind is off. And it is a terrifying thought. We have gotten to the point that we do not take him out anywhere if we don't have to.

He refuses to sit in a grocery cart and will throw things out of the cart, or bite or pull my hair. He lacks respect for social norms... He is violent and likes to hit people in their private areas. This is not the child I am raising! If he does not get what he wants immediately, he will make high pitched squeals and laugh when you encourage him to stop. It feels like he does these things for attention. He does not tolerate discipline in any form and he does not care or understand when he causes someone pain. He does not seek to please us. He is especially aggravated when we show anger or sadness toward his behavior. He absolutely refuses to potty train. This has been a year long battle and I have tried every method the Internet has to offer.

I've spoken with my pediatrician and he believes my child needs preschool and that our insurance (tricare, my husband is active duty military) would not approve a referral. This is where I need help. Who do I talk to? My husband is often gone overnight for work and mason's reaction to daddy being gone is very upsetting for all of us. We are 6 weeks from an out of state move and I need to get a handle on this before we all go insane. We had planned to get his speech re evaluated and go from there with his behavior, but now that we cannot get a referral, I don't know if I should talk to a therapist? We are able to seek mental health care without a referral.. But I just feel silly making an appointment with a mental health care provider for a three year old. Is that the appropriate action?

 

[Ktllc]

Welcome! You found the right place to ask all of your questions.
Look at my signature at the bottom of my post. You'll see that I can relate to your issues. You can also read my post "made a referral for Sweet Pea" and you'll see that your son is NOT too young to seek help for him.
First thing: every State has preschools for kids with special needs. It is free and starts at the age of 3. (before that, there is early intervention and it has a different name in every state).
You can ask for your child to be evaluated by your local school at no charge and he will receive services if he qualifies under their guidelines. Make your request through a return receipt letter. Keep in mind that some kids don't qualify despite having intense needs. It's sad, but some fall through the cracks (my son V did... Sweet Pea will highly likely not because her issues are more obvious to someone spending only 1 hour or so with her for an evaluation).
Even if you get school services, you can still persue private evaluations and services. They usually target different areas/goals. So don't limit yourself if you can afford it.
Helping your son as early as possible is key to better management of his issues.
You could look into neuropsychologist evaluation, referral to a developmental pediatrician, an Ocupational Therapist evaluation (look up sensory issues on top of the other regular Occupational Therapist (OT) stuff), speech obviously. Find a regular pediatrician who will listen to you and work with you 100%. I have one of those and it makes managing the care of my kids a lot easier.
The last thing you want is a pediatrician who fights your concerns.
Your son's difficulties won't be resolved in 3 weeks before youy move, but you can start planning his care by looking up all those different specialists.
A lot of tools can be used to help your son's daily life. It can be overwhelming at first but it is well worth the effort when you start seeing your family life have some peace again.
The first tool coming to my mind: picture schedule of his daily routine. I have been doing it for V for a while now. And it still amazes me how much it helps him. I just started with Sweet Pea. This is an Autism Spectrum Disorders (ASD) technique but it can be helpful to a whole bunch of other kids with issues.
Definetly look into sensory issues. Not easy to understand and apply at first, but once you get the hang of it: amazing results! "Sensory processing disorder" by Carol Kranowitz is a great book to start (highly recomment guidance of an Occupational Therapist (OT)).
More will come with some input.
Hang in there. It will get better (not magically obviously, but with better understanding and accomodations)

 

[masonsmama]

Thank you so much for your reply. We have moved several times in the past 2 years, most recently we were in Oregon where my son was being seen by early intervention for his speech delay. When we moved to California I contacted the school system to continue his EI, to no avail. They never answered the phone or returned calls and the head start program wouldn't accept him without a new evaluation and we didn't qualify based on income. When he was evaluated by EI just before he turned two, he was scored at 28/100 for communication skills, 50/100 for adaptive skills, 60/100 in cognitive, and 40/100 for social skills. His gross and fine motor skills were both near 90/100. I have all of the information from our EI coordinator. When we do move, I guess I will be starting over with a new doctor and new EI office (hopefully, a better one). Would it be appropriate to first find a pediatrician that is on board?

I can't figure out how to make a signature -_- lol

 

[buddy]

Do you know where you are moving? (I assume so but dont live a military life so didn't want to presume)...

I agree, you have a short time left. I think setting anything up now would be useless. I would start now looking at what specialists are there, in the new location.

I am so sorry your pediatrician said that about a referral. It really is on the pediatrician. to make sure they word the referral so that it is shown how important it is. The one clear thing that is never disputed is that early intervention is most important. I would fight tooth and nail with any pediatrician who denied my knowledge that my son had some serious issues.

You say he is not delayed, I assume you mean in terms of ??? self help skills?? playing with other kids? Playing with toys??

How does he do with peers? Does he line things up ever? does he have a special kind of toy or game he focuses on....or a special tv show he obsesses over?

The most common mistake, even for teachers and psychologists in schools when they have researched behavior assessment, is to say that a child is doing what they do for attention.

WE often give a lot of attention to behaviors, that does not mean that is what started the behavior in the first place. Attention can often make a behavior continue. But most frequently, a behaivor is started because the child does not have the skills to do a better option.

If he is not understood by anyone but you at home he should absolutely qualify even by insurance standards. He would for sure qualify in teh school system if he is not understood at age three.

FInd out your new school district (after you move) and draft a request for evaluation for special education services in writing to send to them even now (if you already have an address to show you are in their district) Say that your son is X years/months and has delays that affect speech, communication and behavior. He is not able to participate in activities due to these challenges. (This is NOT the time to brag about what he is doing better! When asking for services or referrals, just emphasize the concerns...LATER when he is in, you can give more of a balanced view.....I know that is hard)

Say you are requesting a full developmental evaluation (dont limit it to speech so you can get a baseline).

Then send it return receipt to the director of special education or the director of early childhood special education.

That starts a federal and state time clock and they must respond to your request. Once an assessment plan is made they will only have a limited time to complete the assessment too. KEEP all paperwork and communication logged and dated.

I agree, to also attack on the private (out of school) front if you can push your insurance to do so. Hopefully your new state and doctor will be better educated on the importance of early intervention.

My son was a biter, thrower,etc.too. He has autism. He was diagnosed at age 4. (by the way, the first day my son was home with me, he bit my niece's private area when sitting across from her on a glider/swing...they are right at that level at taht age)

I know it is really scary to even think there may be a real diagnosis or big issue going on. There may be, there may not be...but in truth.....it is a relief to know. It helps to know you have tools that match whatever is really going on.

Typical parenting does not really work well for kids like this. Time out, etc. does not help a whole bunch.

There are many ideas that do help, many from the autism spectrum world, but which really help with any child who is having challenges esp. at your son's age. PIctures to help show where you are going, to show your schedule for the day, to help learn potty training, etc... all are good tools.

I'd expect that this move may increase his behaviors, change can be very hard on kids who have challenges like this. Be prepared and dont take it personally. It is not your parenting. It really does sound like he is struggling.

If you can get approval (or pay privately) a neuropsychology evaluation or an evaluation by a developmental pediatrician would be great. I'd also get an evaluation from an occupational therapist to see if some of the activity level is due to internal dysregulation or sensory integration problems. That can be subtle. THey will also check motor skills and planning deveopmental levels.

I lived a similar life to what you describe when my son was little, though he was in early intervention right away.

I know it can be very isolating and challenging. And for me, I wondered if I was a good enough mom for him sometimes.

Anyway, glad you found us, I typed in a rush so I am sure others will be along.

Oh, you might check out some books

The Explosive Child by Ross Greene
What your Explosive Child is trying to tell you by doug riley
Floor Time by .....(Steven Gutenburg??? I think, may be wrong)
RDI....look this up on the web...relationship development inventory I think....again has some really good ideas

HUGS, glad you are here!

 

[TiredSoul]

First thing: every State has preschools for kids with special needs. It is free and starts at the age of 3. (before that, there is early intervention and it has a different name in every state).
You can ask for your child to be evaluated by your local school at no charge and he will receive services if he qualifies under their guidelines.

^^^ Yes! When my easy child was 3 I requested the school district evaluate him because we had a hard time understanding his speech. He qualified for articulation speech therapy and got an IEP. We would go to the local elementary school once a week for services. You can also get free pre-school (which we did not need).

 

[masonsmama]

I'm not sure how this forum works lol but I think I posted a reply once and I will re update to answer more questions. We will be moving to Arizona. Unfortunately a very small town about 15 miles north of Mexico. In my last response I noted the progress we had with EI in Oregn... It was horrid. The Speech Language Pathologist (SLP) was late to our meetings or didn't show at all. She discounted the behaviors that are listed in his profile that I had concerns over (biting, purposeful urination on bedding/floor/furniture, no eye contact). my husband was in afghanistan during this time we lived in oregon as well and little man was in daycare. I just found another resource here in the San Diego area called C3 children connect. It is a free service offering 90 minute evaluation in speech, behavior, social, cognitive and motor skills. I think I will start there since I don't have enough time left here to do much else. I think if I can at least get a report from them I can use that to help me when I do get moved. We still have copies of his IFSP from Oregon, and I think if I couple a report from this C3 service and his old IFSP a new pediatrician may listen to my concern.

ETA:

well that was a fail. It posted much earlier than I suspected it had. Anyway--I was trying to add that in regard to his not being developmentally delayed I suppose I mean cognitively? He seems like a normal child who plays with his own toys normally, but is 'set off' easily. He has routines we need to follow and things we say to avoid meltdowns. When he wants or needs something, it is RIGHT NOW. There is absolutely no level of patience. For example, this morning he was thirsty. He had been watching a new movie, so he came to me and punched me in the eye. I asked him why he punched mommy and he began to cry and said he wanted juice. It seems as if he understands things but isn't able to grasp the importance of his actions, no cause and effect or consequences. It feels like if he were to start school with this behavior, he would disregard the rules and not complete classwork because he doesn't try to please anyone.

 

[Ktllc]

Mason, Build your file for sure. But be also vigilent to have him evaluated by highly competent professionals. It is frustrating but don't shy away from a long waiting list if it means getting your son seen by one of the best experts in your area. Unless speech and Occupational Therapist (OT), comprehensive evaluation are best left to PHd level professionals (school will unlikely be PHD level, but it's different than private).
Also, your pediatrician should listen NO MATTER WHAT. You don't need "proof" by someone else. Your "testimony" of your son's behavior is proof enough. Sure you are not a doctor (or maybe you are ... I actually don't know lol), but you are an expert in your child. Start having this frame of mind right now. I don't mean to be tough on you, but you need to be armed for the journey ahead of you. You'll have to be strong and confident in your knowledge of your child. It is a tough road and this forum will be here to help you.
You will learn a lot and need to keep an open mind, but don't doubt your own skills as a parent.

 

[BusynMember]

Where you are going, wherever that is, get a neuropsychologist evaluation. I doubt this is due to any sort of childhood mental illness. I'm thinking more along spectrumish behavior. It's so very much like lots of kids here who are on the spectrum at that age. And it can be helped with the right interventions. I don't think pediatricians do a very good job at diagnosing neurological disorders/faulty wiring in our kids. They often just pass the buck or hope it will go away, which usually doesn't happen. I'm afraid that he won't make it in a regular preschool right now. He probably needs a school for kids with special needs and interventions.

A ninety minute assessment can't tell anyone much. Neuropsychs generally test 6-10 hours and in all areas. He doesn't need to have a low IQ to have a rather important problem that needs fixing and won't go away on it's own.

Good luck and keep us posted.

 

[masonsmama]

Do you know where you are moving? (I assume so but dont live a military life so didn't want to presume)...


How does he do with peers? Does he line things up ever? does he have a special kind of toy or game he focuses on....or a special tv show he obsesses over?

Forgot to answer these... And my first reply didn't post I suppose. I'll start over.

We lived in Oregon in 2012 while my husband was in Afghanistan. Goober's first evaluation was done by "Healthy Beginnings" (free screening for 0-3) and then we were referred to EI. EI services in Oregon were so limited, we were seen one hour per month, with a Speech Language Pathologist (SLP) that really offered little to no help and was unpredictable at best. I do have all of the paperwork still. He scored less than 60/100 in 4 out of 6 categories, but he was only qualified for services under communication and social skills. His motor skills were on par with normal development which had never concerned me. I tried several times to contact the EI office in California, but in order to re-evaluate him, I needed to have his file faxed from the office in Oregon and apparently they could never get it done, as they would never return my calls. I have not been impressed with either of the EI offices I've dealt with. I tried getting him into head start, but without his evaluation done, we don't qualify based on income.

Now, we will be moving to Arizona. A very tiny town 15 miles north of Mexico. I am going out on a limb to assume that services will be poor or limited in the area. As for your other questions, he does okay with peers. He does not share unless I trick him into thinking he is getting something better out of it. If he is asked to share, he will hit/bite/tantrum. We have avoided him around other children at times because I feel consistently nervous about who he will hurt this time. It's like a switch. As soon as something upsets him, he is Hulk status. Bringing him down from that is challenging. He doesn't seem to do anything out of the ordinary in terms of playing with toys..he plays imaginatively but he really doesn't play with toys often.. he did at one time have a very strange obsession with a vacuum cleaner. He used to kiss it goodnight. He's grown out of that, but does display some Obsessive Compulsive Disorder (OCD) behaviors. He doesn't like for us to close doors, he will plead for us to leave it open "just a little bit". His bedtime routine is very strict and cannot be changed as well as when we leave the house. He takes several minutes to get into his car seat because of the way he insists to close his own car door, open and close the window a few times before we leave, etc.

 

[BusynMember]

OMG.

Autism spectrum disorder, high functioning. He screams it. The weird obessions and inability to transition without melting down, and his insistence on routine are so classic. The obsession with the vacuum is amusing. My son liked lightswitches and would turn them on and off until we'd go crazy and force him to stop and then that would make him tantrum. Then he outgrew that obsessions and has various ones along the way in his life (he is nineteen now and doing pretty well). He also had a speech delay, but good motor skills.

All spectrum kids, if indeed your child is...a neuropsychologist would know, are different. My son never hit other kids or got angry if they took his toys, but many spectrum kids do. At any rate it does sound like your son's brain is wired differently and that he will require a special type of parenting and a special type of learning to socialize. Maybe he feels boxed in when the door is shut. Lots of anxiety comes with the spectrum. Of course, I can't diagnose and don't know if I'm right, but I do have a feeling that this is why your child is so difficult. He sees the world in a different way than most people do, but it is very treatable. Each kid can reach a certain level...some go to college. My son can at least work and has learned to socialize and never ever melts down anymore...he is as kind as sweet as they come. Yet he still dislikes eye contact, but will force himself to make eye contact now when it is necessary.

One thing I can say with certainty about your child is that the world confuses him, regardless of diagnosis, and he is frustrated and needs to learn how to compensate for his differences. Most of our k ids are that way, regardless of diagnosis. Early intervention is the best stop gap method of helping.

Whatever you do, see a neuropsychologist. Good luck!!!!!