Am I Doing the Right Thing?

[Openwindow]

Hi Everyone,

I am 38 years old, married with 2 young boys (ages 2 1/2 and 15 months). We are expecting another baby in early December. I currently work full time (nights) and it is my hope that when I go on maternity leave at the end of November, I won't have to return to this job.

 

We will have our hands full with 3 little ones for sure. In addition to that, my oldest was diagnosed with Autism back in August. He is undergoing daily therapy and will be starting a special preschool in October when he turns three. At his most recent neurologist appointment, the neurologist was not pleased with his progress, and they are beginning the process of doing chromosomal testing to see if there is something going on with him in addition to his autism. I feel especially when he starts school he will need me home at night (and also otherwise I would never see him- I work from 4pm-1am Tues - Sat nights). I think with his special needs he really needs his mother with him- I feel like I just can't do enough for him.

 

Also, my husband works days- comes home at 4pm at which time I walk out the door to go to work. I come home around 1am and he is asleep. We have only Sundays off together, and I am usually so exhausted I sleep most of the day. We have barely any family time, and our marriage is suffering also.

 

In addition to this, I hate this job. It is stressful and unfulfilling. I often operate on 4 hours sleep getting to bed at 2am and waking up with the kids when they get up around 6:30am.

 

My fear is that my paycheck is the larger of the 2 of us. If I quit, it will be more than cutting our income in half. I have looked at where we can cut expenses etc and done budgets etc and just can't make the numbers work right now the way things are. I would be happy to take a part time job closer to home after I have the baby (my commute is currently 40 min each way). Less hours, less stress and closer to my kids to keep my family more together. My husband has offered to take a 2nd job also.

 

I am a firm believer in "leap and the net will appear" but I am terrified because this is my children's future at stake. Am I being lazy or selfish? Am I doing the right thing? Any advice / insight / input on how I could make this work would be so wonderful. I feel like I am at a crossroads.

[allielynn]

I have a 3 year olf who is in the same boat your son is in, or...he was.

 

At 15 months old, we knew something was wrong. And we did everything we could to get his treatment where we wanted it to be. He was in 16 hours of therapy a WEEK until he turned 3.

 

I can't tell you what to do, but I CAN tell you what changes you can expect.

 

1. When early intervention ends, and the school system takes over..you will see a HUGE drop in therapy. My son, who is non-verbal and very delayed in other areas as well, went from 16 hours a WEEK, to less than an hour. His school day hasn't been shortened, but the actual therapy is significantly lowered.

 

2. To see results, you MAY have to take over, by continuing his therapy at home. We were told over and over that autistic children NEED consistency, or they will NOT learn.

 

3. computer programs such as verba victor helped out son TREMENDOUSLY.

 

4. make sure your hubby is on board, and the schedule does not fluctuate. AT ALL. our schedule in my house is rigid. it's because that's how autistic children learn best.

 

5. every autistic child is different. your neurologist is not looking for additional problems, they are looking for primary issues. it is what neurologists DO. they have to. they will probably never find anything, and they are aware of that before hand. but if your autistic son suffered from an additional issue, it may change the course of treatment.

 

6. do research. you are your childs advocate.

 

7. i recommend seeing a developmental pediatrician. the wait will be much longer than the neurologist. you might wait 6 mos for an appointment. What I noticed is: Seeing a neurologist, they put my son on medication. he was 2. they treated the symptoms, which is FINE. but it's not a solution. A neurodevelopmental ped looks at the bigger picture. They look for alternative ways to help. Mine has been a WONDER, and if it weren't for her my son would not be where he is.

 

8. when your sons therapy gets cut down, he's gonna NEED someone to be home. to work with him one on one. to pick up where therapy is leaving off.

 

trust me, i don't know much. but i DO know where you will be in a few months.

 

if you need any help on finding good doctors, or a therapy regimine, or anything else, feel free to PM me. a support system full of parents who are going through the same thing saved me when I was lost.

[Openwindow]

Thank you so much for taking this time to respond. It means a lot coming from another mom who has gone through the same things we are going through.

 

I hadn't really thought of it that way- in terms of the drop off in therapy after school starts. My son currently is on 15 hours a week of therapy (EI and ABA) and on a waiting list for more. He is non-verbal also, and we have increasing concern about his motor skills, which seem to be regressing now. We are in Massachusetts, and seeing a neurologist in Boston. Unfortunately his neurologist announced at our last visit he is leaving the hospital and another doctor (who we have not met yet) will be taking over. My son will also be seeing a Neuro-Muscular specialist in the next few months. The therapy and doctor schedule seems so intense and overwhelming now, I wasn't even thinking of what it will be like when it just stops for him. Thank you so much for waking me up to this.

[allielynn]

My son has dyspraxia as well as ADHD, and SI disorder as secondary diagnosis.

 

A lot of times, Autistic kids have secondary diagnosis. In our situation, it took awhile before ANOTHER diagnosis of dyspraxia came in.

 

Dyspraxia is a motor planning delay. Things like crawling or walking, and even talking, require you to "plan" the sequence in your mind. This covers such a wide range of situations. You really have no idea. Every single thing you do is a planned sequence. Even things like MEMORY or walking up and down stairs is affected.

 

You should ask your doctor about it as a secondary diagnosis. It is not very diagnosed right now in the US, but it is actually estimated that more than 20% of the population might have it to some degree--and the treatment would be COMPLETELY additional to what he is recieving now.

 

It will be worse when he turns 3. Not just for him, but for you. You will suddenly lose your entire support system, and feel like your childs needs arent being met. It was then that I decided to stay home for a year, and take over where his support team left off.

[allielynn]

I would also recommend having him see a psychologist. I KNOW it seems ridiculous to put a nonverbal child into therapy.

 

But it's for the parent as much as for the child. Frustration because of being nonverbal causes behavior issues. There are other issues related to Autism. Other issues related to being 2. And it all sits there, and builds on the child. Of course, they don't know how to handle it..and it will negatively impact their progress.

 

We have a wonderful psychologist who does not talk, but interacts through play!

 

For about half the session, we talk about concerns I have. These concerns range from sleep pattern issues to behavioral issues. He offers solutions, as well as things to try.

 

Do you have a picture board of your routine, as well as options to help give your child choices throughout the day? If not, I recommend doing that immediately. and implimenting it. You have NO idea how long of a way routine and structure will go to improving your sons situation. And that's BEFORE therapy and everything else.

[Openwindow]

Thank you again so much. I am wondering if dyspraxia is something they will discuss when we see the Neuromuscular specialist?

 

We don't yet have a picture board for our routine, though one of my son's EI specialists is helping us work on one. I know this is something that we need to get in place ASAP, especially due to the big transitions he will be going through- with ending therapy / staring school and a new baby coming into the household.

 

I hadn't thought of the end of therapy this way. I spend so much time stressing about having people in my house, and did not think about the repercussions of losing this help when he turns 3. Our EI / BB specialists are unfamiliar with the school system in our town since they have not had a child transition out in this system for a while. They warned me that the level of therapy would drop off, and said they would be at our IEP meeting to help me advocate for my son- but I have to remember this is an integrated classroom where he is going to get much much less one on one attention than he is getting now.

[allielynn]

It really is going to be one of the most intense transitions you will ever go through.

 

If there were any way for you to take some time off of work, or go part time..I really would recommend it.

 

It's not being selfish. Trust me, you will be doing MORE than your share of work while caring for him....but if you can swing it, I would try to.

 

I had no idea how hard it would be to transition.... those first few months are a whirlwind.

[Batya33]

I am writing because I'm a mom of a three year old who is/was a late talker (so not exactly what you are going through) but my input would be yes, if you can possibly be at home with him, working with him, being there to monitor what treatment he is getting and not getting ,etc etc I think it would do wonders especially since you've been doing so much with him his whole life. From my experience working with my son at home and being intimately involved in all we do for him I know it has added a lot of value (and I don't mean that in a braggy way at all!!). Also from my direct and indirect experience when you're dealing with therapists/doctors/schools there are constant things that come up that need to be scheduled and rescheduled and you don't need more stress!

 

I also wanted to put in a plug for you remembering to get enough sleep -I'm no good with sleep deprivation -hopefully you're better at it than I am but it does no one any good if Mom is sleep deprived. You deserve to take care of yourself both for yourself and for your family and I hope you do it -and if that means working fewer hours or a different schedule then yes it is that important.

[Openwindow]

Thank you! This sleep deprivation is getting old! I agree with both you and Allielynn that this is going to be a tough transition, and I need to be fully present in it because it is coming whether I am ready or not. I see now more than ever that I do need to be home with him- (and this is not to mention my poor 15 month old son who is constantly playing 2nd fiddle since his brother needs so much). I guess it is just a matter of figuring out how. I just have not been able to get a clear head about it (could be the sleep deprivation!!!!!!!)

[Openwindow]

When did you find the transition starting to get intense- was it just before your child started school, right from the start or a little after when you realized how the drop in therapy was affecting him?

[allielynn]

I noticed it became a problem when i had my first IEP meeting. They said "He will hae 20 mins 2x a week of Speech, 20 mins 1x a week for PT and 20 mins 1x a week for OT."

 

I thought "Oh. No." Ever since then, it's been an uphill battle.

[Batya33]

I noticed it became a problem when i had my first IEP meeting. They said "He will hae 20 mins 2x a week of Speech, 20 mins 1x a week for PT and 20 mins 1x a week for OT."

 

I thought "Oh. No." Ever since then, it's been an uphill battle.

 

20 minutes? How does anything get done in 20 minutes? I can see a half hour (where longer might be difficult for a 2-3 year old) but I would think it takes at least a few minutes to "warm up" and the transition time at the end and then what's left? Sorry if that is off topic it just really surprises me and I'm sorry to hear this.

[Openwindow]

I hope this is not the case when we have our first IEP. I knew it would be less but I can't imagine what it would be like if it dropped that much! I am expecting to have our first IEP meeting sometime in September once the school year starts but I have no idea what kind of therapy they offer- and at what time intervals. He will need at a minimum speech and pt.

 

It looks like I will need to supplement his therapy on my own, which I don't know how we are going to afford if I'm not working. It is such a vicious cycle.

[allielynn]

You could take the therapy he is getting, and supplement it on your own. He won't be learning NEW things..your job will be to take the things he IS learning and enforce them throughout his day. It's what we do, and it works marvelously. Basically...by reinforcing EVERYTHING he is learning in therapy, you are making it much easier for him to learn what he needs to learn, so the therapist can move on to something else.

 

Pop into sessions. TAKE NOTES. Ask what would be most benficial for you to work on at home.

 

Ask your PT about weighted vests... heavy work... what specific things he should be doing for his age, and in what sequence (my son is currently working on alternating foot patterns up and down stairs, standing on one foot for more than 3 seconds, and trunk/shoulder control)... ask about deep pressure massages to help him organize his body.... joint compressions, also to organize his body...palm brushing to help him relax when he is overstimulated...

 

Ask your OT about the same kinds of things...ASK about what you can do to help him organize his body. Ask what you can do to help. At this age, it is pretty much the SAME thing as in PT.

 

Ask your ST about how to increase tone in his mouth. Maybe mouth brushing, or chewing crunchy foods. Drinking thick milkshakes through straws. Helping him imitate sounds....blow bubbles..etc. Introduce new textures and flavors.

 

All of this stuff you CAN do at home. Trust me. I do it EVERY. SINGLE. DAY. It isn't hard. But its stuff you have to learn and be dedicated to learning.

 

What you need to do at your IEP is to negotiate. They might offer you PT 2x a week, OT 1x a week, and ST 1x a week. I'd say "No way....OT is fine..although I feel it should be more, but he NEEDS more speech. I want an additional 20 mins a week" etc. You will probably NOT get everything you ask for. In fact, they will probably give you NOTHING you ask for. But you have to push as much as you can. Get a parent advocate if you have to. Id they think you are a doormat, they'l treat you like one....remember that they are responsible for financing this therapy... so they will try to do anything they can to limit it.